Disability World
A bimonthly web-zine of international disability news and views
Available on the web at http://www.disabilityworld.org
Contents, Volume 24, June-August 2004
International News & Views ............................................................................................ 4
CBR in Africa -- Between Evidence and Ideology......................................................... 4
Disability and human rights in Latin America .............................................................. 14
Viewpoint: Where we are in the process of developing a UN Disability Rights
Convention ............................................................................................................... 16
RI Congress on Rethinking Rehabilitation: Overview of Keynotes ............................. 27
Conclusions of the Ibero-American Seminar on the theme, "2004: An Opportunity for
Persons with Disabilities" ........................................................................................ 30
Disabled Youth Leadership Training in Post Conflict Resolution ............................... 35
Victims of Landmines Increase by 150% in Colombia ................................................ 38
Call for Papers: Travel & Disability in Review of Disability Studies .......................... 38
The Imprint of Discrimination ...................................................................................... 39
European Union Requested to Direct 10% of its International Cooperation Funds to
Projects concerning Persons with Disabilities in Ibero-America ............................ 40
CERMI Requests the Organization of American States to Create a Committee Against
the Discrimination of Persons with Disabilities....................................................... 41
Leader of the Disability Movement Denounces Bolivian Government's Indifference
Toward the Ibero-American Year of Persons with Disabilities ............................... 42
Alliances for an Inclusive Society: World Bank Promotes Inclusive Development in
Latin American Countries ........................................................................................ 43
Clarification: Registration for the World Bank's 2004 International Disability
Conference and Poster Board Exposition ................................................................ 45
Disability Buzz.............................................................................................................. 46
People in the News .......................................................................................................... 47
Interviews with Latin American Leaders about the UN Convention process and
prospects .................................................................................................................. 47
Australian Architect, New RI President Outlines Program .......................................... 54
Global Deaf Connection: Interview with Kevin Long, Social Entepreneur ................. 57
Memories of Tanis Doe, Renaissance Woman ............................................................. 63
U.S. Disability Rights Leader Awarded Honorary Doctorate from Ireland ................. 64
Hugh Gallagher, author & international advocate, 1933-2004 ..................................... 65
Independent Living ......................................................................................................... 66
The Disability Movement and Community in Afghanistan .......................................... 66
Sexually Competent: Physical disabilities should not impede an active sex life ......... 71
Interview: Latin American Advocate Joins Mental Disability Rights International .... 74
Who takes Care of Persons with Multiple Disabilities in Guatemala? ......................... 83
Guatemala: Leadership and Representation, a Challenge for the Organizations of
Persons with Disabilities .......................................................................................... 85
International Institute for Disability Advocacy: Interview ........................................... 87
A. Exactly, if nothing else it's been an incredible experience in learning how the
nonprofit world works, how to apply for grants and about different funding
organizations. I just think, we have our little program clicking right along and we're
happy with that and we know that as long as we can keep that going, then we have a
lot of opportunity to grow it into the future. ............................................................ 92
Russian Disability Organization Seeks Partnership with U.S. Independent Living
Center ....................................................................................................................... 92
How Now Blind Cow or Dining in the Non-Light in Zurich ....................................... 93
Venezuela: Ibero-American Summit on Sports and Recreation for Disabled Persons,
November 2004 ........................................................................................................ 94
Website chronicles disability rights, independent living movement ............................ 95
Independent Living briefly ........................................................................................... 96
Access & Technology .................................................................................................... 102
Proposing an Accessibility Agenda for Afghanistan .................................................. 102
Hong Kong: becoming an accessible destination (and list of travel websites) ........... 108
Global Universal Design Educators Online News ...................................................... 112
Costa Rica: The Struggle for Accessible Public Transportation Finally Yields Results
................................................................................................................................ 120
Deaf-Blind Japanese Gain Access to World through Computers ............................... 123
Your Wheelchair is Ready, Sir: Airline Policies & Blind Pasengers ......................... 127
Nominations, please!--DRA's Eagle and Turkey Awards .......................................... 130
Access and Technology Briefly .................................................................................. 134
Employment................................................................................................................... 135
Assistive Technology on the Job: The Difference Technology Makes ...................... 135
"Bridges to Employment" Conference Draws 250 Disabled Latino Job Seekers and
Grassroots Advocates............................................................................................. 149
Research Brief: Rural Economic Development: Worker Cooperatives and Employment
of People with Disabilities ..................................................................................... 150
How Disabled People Manage In The British Workplace .......................................... 151
There's Room At The Top For Workers With Disabilities: Canadian research shows
union membership and gender are key factors ...................................................... 156
Meeting Compares Approaches to Disability Benefits in Nine Nations .................... 158
Ethical Management of Disability and Employment (La Gestión Ética frente a la
Discapacidad y el Empleo): Book Published in Spain........................................... 161
About Myself: a blind man describes his life in Bangladesh...................................... 162
Governance & Legislation ............................................................................................ 165
Towards Demystifying the African Decade of Persons with Disabilities, 1999-2009 165
The Disability Situation in Nepal ............................................................................... 168
African Conflicts and the Disability Toll.................................................................... 172
2004: Year of the Emergence of Persons with Disabilities in Ibero-America ............ 175
The Penitentiary System and the Mental Health Hospital in Guatemala.................... 177
Interviews with Disability Leaders Elected or Appointed to Government Office ...... 180
First Disability Survey in Guatemala .......................................................................... 201
Argentina: President of a Social Institute Fined for Not Complying with Disability Law
................................................................................................................................ 203
Protection of Disabled People's Rights in Georgia: Highlights 1988-2004 ................ 205
Soldiers returning from Iraq and Afghanistan critique disability benefits system ..... 211
Governance Briefly ..................................................................................................... 212
Arts & Media ................................................................................................................. 212
Freelance Opportunities for Disabled Latino Writers in the U.S................................ 212
2005 Superfest Film Festival Call for Entries............................................................. 213
Disability World Featured Artist Now Has Exhibit at Health Museum ..................... 213
A Barrier Free Exhibit in Colombia: The XIII Biannual Arts and Visual Expressions of
Persons with Disabilities ........................................................................................ 216
Disabled Musicians on the Move in Madagascar ....................................................... 217
Madagascar : Les Artistes Handicapes Bougent! ....................................................... 219
Argentinian Newspaper Requests Equal Treatment for Disabled Persons ................. 220
Recent Publications and Resources on Media & Disability ....................................... 221
Call for Papers: DSQ Theme Issue on Freakery ......................................................... 223
Ever Widening Circle showcases professional artists with disabilities in San Francisco,
September 29 ......................................................................................................... 224
Women ........................................................................................................................... 225
Factors in Violence Against Women .......................................................................... 225
Book Review: Welner's Guide to the Care of Women with Disabilities: A
Comprehensive Guide to Care ............................................................................... 228
Loud, Proud & Prosperous: New Video Features Micro-credit Projects of Women with
Disabilities in Southern Africa............................................................................... 242
New Book: Women, Disability and Identity............................................................... 242
Children & Youth ......................................................................................................... 243
Ecuador: Only two of every 100 children with visual disabilities in poor countries
attend school, says World Blind Union at Quito conference ................................. 243
Towards Greater Educational Access for Disabled Russians: Presentation to the
"Inclusive Education: Problems and Perspectives" Conference ............................ 245
Madagascar Launches Social Integration for Mentally Disabled Children ................ 247
International Conference Held on "Inclusive Education: Perspectives for Development
in Russia" ............................................................................................................... 249
A Father's Journey with Autism: Book Review.......................................................... 251
Resources & Book Reviews .......................................................................................... 258
EQUITY e-newsletter, Summer 2004: Disability and Asset Building Communities
Working Together .................................................................................................. 258
Manual on How to Involve Disabled People in Development Programs ................... 260
Center for Personal Assistance Services Bulletin ....................................................... 261
Newsletter on Americans with Disabilities Act .......................................................... 266
Welcome to e-bility.com News Update Number 28 - June/July 2004 ....................... 268
Access Currents, Volume 10, No.3 May/ June 2004 .................................................. 272
International News & Views
CBR in Africa -- Between Evidence and Ideology
By M. Miles (m99miles@hotmail.com)
Formal schemes for Community Based Rehabilitation (CBR) began to be planned in
Africa from the mid-1970s, with implementation beginning by 1979, e.g. in Botswana
(Sebina & Kgosidintsi, 1981). Reported outcomes over 25 years have been mixed. In
several countries there has been a pattern of starting with strong ideological rhetoric and
high hopes, undermined by inexperience and planning errors, so the initial effort ran into
major problems. In some cases there has been a serious effort to learn from mistakes and
develop a more successful second or third phase. No African country began with a
monitoring and research framework accumulating and sifting various kinds of data on
CBR, so that planning could progressively be based on evidence rather than ideology. [1]
The balance between these two factors, and their likely outcomes, is examined in this
article.
Seeking Solid Evidence
Informal practice of many components of CBR dates back some centuries in African
histories, and the foundations of CBR efforts of the past 25 years would presumably have
been stronger if rooted in these documented historical practices. [2] Yet the earlier
centuries have almost entirely been ignored, for various reasons. [3] Even within living
memory, lessons from useful work of the 1950s to 1970s are little known and traces are
fast disappearing. [4] One result is that CBR from 1980 onward has too often looked like
yet another foreign import, rooted in alien ideologies, funded from distant countries,
irrelevant to the actual needs of disabled Africans (Ndaziboneye, 2002, p. 110), coupled
with aid agency ignorance about the very varied situations, concepts and cultures of
disabled people across Africa and other developing regions (Miles, 2003a).
The lightness or vagueness that seems to have characterised CBR in Africa in the 1980s
and 1990s was accompanied by a paucity of serious research studies, and the absence of
coordinated and published research that could have illuminated a range of interconnected
problems and possible solutions. The research actually done has mostly been
fragmentary, and too often inadequately reported, or published without peer review and
subsequent revision. [5] During the past 15 years there have been at least 50 (and
possibly as many as 80) disability-related research reports of doctoral or post-doctoral
depth and competence, in English or French, based on African field work. [6] Among the
few directly relevant to aspects of CBR, eight are mentioned or reviewed below.
Useful ethnographic work concerned with disabled people was conducted and reported
by D. Burck (1989), and in much greater detail by B. Ingstad (1997), in the context of
CBR activity in Zimbabwe and Botswana. Both researchers reflected on the complexity
of disability in the lives of individuals and communities they studied, which raised many
questions about the World Health Organisation's approach to CBR, and the lack of
serious engagement with people's existing knowledge, beliefs and practices. Close
ethnographic attention was accorded to deaf people and their cultural resources by L.
Sorin-Barreteau (1996) who was primarily studying gestural communication in rural
Cameroon but included detailed notes of some 160 deaf individuals. In northern Nigeria,
C. Schmaling (2000) devised a detailed technical description of Hausa Sign Language,
necessarily also engaging with the identity and social context of deaf communities, far
beyond the superficial 'survey of disabled people' that sometimes precedes CBR work.
Over several years, A. Sebeh (1996) undertook a complex evaluative study of different
services in which he was involved (CBR; outreach; parent training; and control group;
see Lababidi & El-Arabi, 2002, pp. 76-93, 144) targeting young children with intellectual
disability in the slums of two major Egyptian cities, periodically measuring child
developmental progress and parental attitudes, with standardised instruments. (Further
detail and comment on Sebeh's work appear in Helander, 1999, pp. 183-189). This type
of controlled, comparative study with a scientific basis, in one aspect of CBR activity,
has been attempted during CBR projects in some other countries. In the longer term it
should strengthen the wider picture of how CBR works in practice.
Two more recent doctoral theses, by O. Jadin (2002) and H. Finkenflügel (2004) engaged
with CBR on a somewhat broader basis. Jadin noted in the early 1990s that hardly any
CBR program on the WHO model had been described and analysed with full statistical
data on outcomes and costs. He devised an elaborate survey of reported activities and
outcomes in two groups of disabled people, totalling over 500 participants aged from
birth to early 30s in CBR programs in Benin and in Ghana. A large array of comparative
data is presented and discussed, using statistical significance analysis to overcome some
of the practical difficulties of survey methodology. Jadin describes the process of
developing CBR in Benin and Ghana, and aims to distinguish various factors contributing
to the success or failure of the CBR work.
The CBR program in Ghana ran into major problems, which Jadin documents. After that
study, however, the program was reorganised, apparently on a more successful basis
(Tamm / NAD, 2000). The Benin CBR program, in which Jadin has been closely
involved, is reported to have been successful, and major extensions are now under
consideration. Jadin has certainly improved the supply of carefully tested data in CBR
programs, covering aspects of great interest to governments and NGOS, i.e. the benefit to
the individual and the cost to the service-providing organisation. The absence of any
direct record of the views of disabled participants, while normal enough in the early
1990s when the study began, could now be considered a drawback.
Finkenflügel, after several years of training rehabilitation assistants for CBR work in
Zimbabwe and documenting some outcomes in journal articles and an edited book
(1993), began collecting and analysing CBR research literature. One of the most useful
features of his thesis is the systematic review (Finkenflügel, 2004, pp. 23-48) of 128
papers concerned with CBR, published in peer-reviewed anglophone research journals
between 1978 and 2002, among which 34 are focused in Benin, Botswana, Burkina Faso,
Ethiopia, Ghana, Kenya, Lesotho, Mali, Nigeria, South Africa, Tanzania, Uganda,
Zambia & Zimbabwe. This seems to be the first serious attempt to review and classify the
peer-reviewed, published evidence base for CBR, and to track trends.
Finkenflügel notes a steady rise in the research literature, yet it remains poorly distributed
across the spectrum of knowledge needed about CBR: "the articles available do not
enable constructing coherent views about different key aspects of CBR, or about CBR in
different countries / regions" (p. 43). Only in two small countries, Guyana and Jamaica,
could a substantial picture be built up from articles produced over a significant period
using varied approaches. Finkenflügel refrains from pointing out that even the gateway of
peer scrutiny often allows weak studies with poor methodology and insufficiently critical
discussion to pass through. The lack of coordination, coherence and coverage in the
research data, over 25 years, suggests that sifted evidence is still lacking as to whether,
broadly speaking, CBR works in Africa and elsewhere, or doesn't work; and in which
circumstances it is more likely to work; and similar pertinent questions.
Baloney Fills the Gap
Governments and international aid agencies in Africa have been funding and piloting
CBR for over 25 years, without significant evidence of its efficacy or cost-effectiveness.
The gap has been concealed by ideological conviction and regular shots of published
baloney, while planners wait for researchers to deliver conclusive proof that CBR means
Empowerment, e.g. sight for blind people (or at least a Braille text of a UN declaration of
their rights); all-singing, all-dancing, community involvement for deaf or lame people;
exam success for those with learning disabilities; and a free balloon for anyone still left in
the box.
There is some consensus that, in terms of aid agency interest and attention, CBR peaked
around 1993, and has apparently been declining since then. Yet some developing or
transitional countries are still taking up CBR for the first time, and possibly making a go
of it. A survey among 29 African countries compiled by M. Giannelli and S. Deepak
(WHO DAR Team, 2003a, p. 15) suggests that there is "no national program where
multi-sectoral CBR activities cover the whole country", and CBR is mostly confined to
pilot projects in some areas, using foreign funds. Three countries have already given up
on CBR, closing down their attempts at national programs, while fourteen, i.e. 48% of
countries surveyed, have never started. (The reported information was confirmed by
governments in 2000 or 2002).
The slow decline might be attributable to the complex interaction of many factors, e.g.
the rise of AIDS, causing extraordinary changes in family patterns with still unguessable
social damage over the next 50-100 years; increasing 'donor fatigue', 30 years after the
close of the colonial era; Socialism's disappearance as a credible national policy, and a
switch of West European aid funds to Eastern Europe; the overthrow of South African
apartheid (and loss of a long-term rallying point and excuse for governmental
incompetence across Southern Africa); the growth of postmodern disbelief in grand
metanarratives or ideological programs lacking any evidence base; increasing African
urbanisation, mostly in slums, with further diminution of the (already attenuated) rural
community traditions of mutual support; foreign pressure for tougher economic policies
and obligatory individual contributions to health insurance; and perhaps the growth of
Disabled People's Organisations in Africa with educated urban leaders, who may see
CBR programs as a needless dispersal, to the periphery, of power and foreign funds that
they would prefer to control at the centre.
In particular locations, various forms of CBR might remain buoyant through any of these
adverse circumstances, thus sustaining unrealistic ideas in people who make global
claims on the basis of too small and localised a sample. Yet the broad impact of factors
listed above seems inimical to the long-term success of measures, like CBR, that assume
the availability of a margin of civic conscience, voluntarism, communitarianism, and
active caring for others without an immediate reciprocal basis. Helander (1999, p. 212)
knows that such an assumption "strikes many people as naive, absurd and impossible",
and admits (p. 121) a broad difference between Asia, where non-salaried volunteers may
be found, and Africa, where people normally seek remuneration. The problems of an
"unpaid CBR work force" are underlined by Brinkmann (2004).
Facing Choices
In a broad and critical review based on 18 years of developing externally-funded CBR
programs in Rwanda and Tanzania, monitoring CBR work much more widely and
training managers for it, G. Vanneste (2004) notes many specific difficulties encountered
in CBR programs and projects in sub-Saharan Africa, and some possible remedies.
Probably a majority of CBR programs have been run by people having neither a broad
management background nor particular training for CBR. Yet Vanneste points out that
"The organization and management of CBR is complex and difficult, in a continent
where people either have no tradition of formal management and handling funds, or
where traditions were severely weakened during the experience of colonialism."
Throughout his paper Vanneste returns to the point that, beyond the variegated work
formally called "CBR", there is the already-existing, and vastly greater (though often
under-skilled) daily effort of millions of parents, family members and neighbours, as well
as disabled people themselves, to manage disability and build full and meaningful lives,
in difficult circumstances. He notes (p. 16) that "By far the most widespread positive
resources are those that already exist in the hearts and minds of African mothers, sisters,
grandparents, neighbours, and disabled people themselves", and CBR programs must
enlist and enhance such resources. To do so depends on CBR workers acquiring and
passing on skills that are significantly more effective than those already possessed by the
population they serve, a part of CBR that cannot be achieved by rhetoric alone, nor by
rote learning.
A recent unpublished evaluation of CBR in a Caribbean country by the doyen of CBR
developers, David Werner, underlines the crucial nature of a process of skill development
incorporating the ability to modify and differentiate rehabilitation practice according to
actual needs, rather than applying fixed routines without regard to differences. The
development of lateral thinking in designing, fitting and customising simple, low-cost
aids is a major theme in one of his outstanding books (Werner, 1998). However, Werner
regrets that the lack of such skills is actually one of the commonest weaknesses seen in
CBR programs he has visited across the world. The problem is pinpointed in Southern
Africa by Myezwa & M'kumbuzi (2003, p. 24) quoting a CBR worker: "You cannot
expect us to be precise on things we learnt without background training...." (In the 1980s,
when CBR was a rising trend, professionals enquiring about the skill levels in briefly
trained CBR workers used to be assured that they would always be supervised by
properly qualified staff. That proved easier to claim during the sales talk, than to arrange
in practice).
An obstacle to following the pertinent remarks by Vanneste and Werner is the tendency
of UN agencies and international INGOs to seduce grassroots activists away from
feasible, practical support within the day-to-day realities and motivations of disabled
African lives, to seek instead the realm of ideology, the high-flown rhetoric of 'rights',
'equality', 'opportunity', the mantras intoned hypnotically at endless conferences by wellmeaning people with a taste for development tourism. [7] The 2001 African regional
CBR conference reported by S. Hartley (2002) brought together many people having
practical experience with CBR, who offered some useful observations; yet most of the
conference papers are stuffed with wondrous ideological slogans, leading to muddled and
contradictory demands and priorities. Many participants probably knew that these
belonged to the world of baloney, but thought that donor representatives might be
listening so they had better mumble the correct jargon. In face of that conference's first
"Key CBR Ingredient", that CBR must "take a rights-based approach" (p. 199), Hartley in
her editorial chapter opted for reality, commenting that "a rights-based approach
pioneering equal opportunities, may be an unrealistic and unhelpful approach in a
community where few people have rights" (p. 10).
Experimental Futures?
As long as the stultifying mantras dominate CBR debate, a continued decline of CBR in
Africa is likely, though not inevitable. Substantial amounts of evidence and information
already exist about how to succeed or fail with CBR (variously understood) and other
service options in Africa, scattered in libraries and databanks across the continent and in
euro-american universities and aid agencies in six or seven languages. If even a few of
Africa's leaders really wished to have over 90% of this evidence collected in Africa and
sifted by disability-aware researchers in consultation with experienced African policymakers, it could be done in under one year, at modest cost, to produce a set of action
scenarios for CBR, matching typical African interests and capacities for urban and rural
programs by government and/or NGOs, based on documented African experiences and
incorporating a great deal more of African concepts, motivations and life situations than
has been seen yet in CBR programs. [8]
At present, however, there is little actual demand for evidence-based policy and strategy.
Mass politics is fuelled by baloney, not by research evidence or reflective practice. Some
international agencies working in the disability field have practically given up using
serious information. Under the 'Participation' banner, it is deemed preferable to collect
more touchy-feely "People's Own Stories" and hoist them on websites illustrated with
cute cartoon figures. Of course, in sufficient quantity, variety and veracity, people's
stories about managing life with a disability are an important kind of evidence; but a
dozen such stories, carefully chosen to support a particular strategy, do not make an
evidence-based policy that will serve the wider population well. They are more like a
kind of fraud.
Using whatever definition, CBR is nowhere a completed model that can be fully
examined. That is why, some 15 years after launching his idea of 'national CBR', Einar
Helander (1993, p. 189) modestly admitted that "Several decades of work will be needed
to identify the appropriate ways of arriving at a system capable to deliver essential
services to all those in need." This was perhaps the wisest forecast in the entire CBR
literature. When Helander revised his book in 1999, his prediction remained unchanged
(Helander, 1999, p. 192). "Several decades" are still needed, to discover whether CBR
can be made to work on the larger scale.
NOTES
[1] Health service developers with a research mentality and an interest in disability have
been at work in Africa at least since the early 20th century, for example H. Stannus
(1914) in Malawi, and the deaf Nobel Prize winner for medicine (1928) C. Nicolle, in
Tunisia. An example of the careful accumulation of data about disabled people and
family care-givers, and its application in a CBR project near Addis Ababa, Ethiopia, is
described by T. Gebremedhin (1997). However, the evidence / ideology balance is only
one (though probably an important one) of several ways to review CBR development in
Africa. For example, disabled historians in 2015 might wish to scrutinise the sources of
foreign money and power entering Africa during the 1980s in the name of CBR, or in
competition with CBR. Why did the Nordic countries pay for disability-related activities
in many African countries? What did they get out of it? Did the big 'blindness' charities,
like CBM, Sight-Savers and HKI, commission any research into the effects that their
funding policies and priorities were likely to have on CBR development?; and so on.
[2] Some 4,000 years of historical evidence exists in Africa of people with disabilities,
healing therapies, assistive aids, community attitudes, and self-organised disability
groups (for references, see historical section in web bibliography, Miles, 2003b). The
earlier part of the evidence derives from Egypt up to 2000 years BC. The geographical
focus increases across northern Africa from Roman times and the early Christian era.
Folk-lore and proverbs preserve some ancient community practices and viewpoints on
disability, across the continent. Historical therapies and community practices were
described by interested travellers from the 13th century on, and later by anthropologists
and historians. Some African traditional interventions such as trepanation achieved
cautious recognition by colonial medical officers. Blind people and those with leprosy
sometimes organised themselves for mutual support, and other people with disabilities
lived together, managing their own affairs, e.g. in a designated part of Kano city, Nigeria.
Systematic documentation of disability histories in Africa has only recently begun to
mature, and to move beyond a celebration of service development by professionals and
parents. While records of the latter are useful (e.g. Dommisse, 1982; Lea & Foster, 1990),
the potential exists to produce detailed accounts, with strong roots in the earlier centuries,
in which disabled people figure as agents and individuals, rather than merely a mass of
beneficiaries. A formidable example, based on doctoral research by E. Silla (1998),
concerns people with leprosy in Mali, starting from Arabic descriptions by Ahmad Baba
al-Tinbukti, c. 1600, and proceeding to personal accounts of individuals organising group
campaigns through the 20th century, with medical advances and complex social changes
shifting the battlegrounds and their struggles for identity. See also Nesbitt, (1956, 1958)
on independent living and mutual help in South Africa, and Miles (2004) on individual
lives of deaf people across Africa through 500 years.
[3] The main reason for ignoring historical practices seems to be the thinness of
published knowledge and lack of detailed studies in African social history, and a belief
that traditional African responses to disabled people must be uniformly negative and
harmful. Euro-American feelings of superiority may play a part, e.g. the ill-informed
conviction that, in earlier centuries, all Africans lived 'primitive' or 'savage' lives, in
which disabled babies were killed, elderly disabled people died if they lagged behind
their nomadic group, and medical care for disabled youths and adults was minimal or
actually harmful. Such practices very probably did occur in some, even many, parts of
Africa, as they did in many other parts of the world; but they were not the whole story.
Further, the yen for 'pioneer angel' status, i.e. to appear as the 'first' saviour of a
downtrodden minority, may motivate some people to ignore, suppress or fail to search for
evidence of earlier activities. Painting Africa as a perennial disaster area enables the
stupider aid agencies to exhort the public to "help save a blind child" (etc), rather than to
ask whether modern African cultures have any historical strengths on which self-help
programs could be based.
[4] A tragic example was that of Mahfoud Boucebci in Algeria, an innovative
psychiatrist, writer and humanist, who in the 1970s discovered a 'middle way' for people
with mental disabilities, by basing a form of CBR in low-cost, locally controlled
'neighbourhood centres' (Boucebci, 1981). This man of large vision and practical concern
was murdered in 1993 by political extremists who hated him because he did not hate the
people they believed he should hate. Too early a death also overtook the development
activities of the deaf black American Andrew Foster, who from 1957 onward planted
schools where deaf children would be taught using sign language in at least 15 countries,
and trained a generation of deaf African activists whose energy remained strong to the
end of the 1990s. He is still honoured in the deaf community, though little known to more
recent service developers.
[5] These flaws cannot entirely be blamed on idle researchers, indifferent universities,
ignorant aid agencies or chaotic African governments. Broadly conceived, CBR is
intended to mobilise resources so as to address 'disability in the community' across the
spectrum of age, gender and impairment, with some involvement of disabled persons'
families and other people in the neighbourhood, plus referral institutions, schools, health
centres, potential employers, administrators, mass media and politicians, and designers of
the environment, such as architects, civil engineers, city planners. From 20% to 40% of
the population could have some direct or indirect involvement in CBR activities at
different times. Even to describe the scope of such involvements, so as to determine a
valid cross-sectional sample, would be a major task. To monitor such a sample in a
controlled way would require very considerable resources, which might conceivably be
allocated for studying topics considered vital to the security and financial future of an
African state, but hardly for an experimental scheme for disabled people in slums and
rural areas. Such difficulties make the CBR field unattractive to systematic researchers,
so such studies as take place tend to be scrappy, and target whatever bits look as if they
might be easy to measure. Nevertheless, some efforts have been made, over decades, to
accumulate an evidence base by collecting, editing and publishing materials on disability
concerns, as for example by K. Marfo and colleagues (1983, 1986) in West Africa, and
by others over a much longer period in South Africa.
[6] Apart from eight items (Burck; Finkenflügel; Ingstad; Jadin; Schmaling; Sebeh; Silla;
Sorin-Barreteau) referenced below, doctoral theses concerned with sub-Saharan disability
have been written in English since 1989 by Adoyo; Bagandanshwa; Barcham; Bastos;
Chiswanda; Eleweke; Hutten; Kalabula; Katwishi; Mantey; Mbise; Mboya; Moyo;
Mpofu; Nambira; Peresuh; Tungaraza; Watts. Most of these are listed in the bibliography
at http://cirrie.buffalo.edu/bibliography/Safricatoc.html. A majority concern some aspect
of early intervention or educational work in special or integrated schools, or medical
aspects of disabilities. There are very likely at least another 30 or 40 disability-related
doctoral theses or major research reports since 1989, some probably in German, Italian or
Afrikaans, still unknown to the present author. The same web bibliography includes over
200 items directly relevant to CBR in Southern Africa.
[7] A recent example was the "International Consultation to Review CBR", at Helsinki,
May 2003 (WHO DAR, 2003b). Though attended by many people with significant
frontline experience of developing and managing various types of CBR, the consultation
'report' merely compiles some snippets from discussions. Most are on Politically Correct
lines, with a few contrary statements, e.g. doubting the capacity of disabled people or
local communities to take a useful part in CBR and decision-making, on pp. 3, 6-8, 11
("people with disabilities and DPOs do not have the capability for advocacy and lobbying
on [accessibility] issues"), apart from the inherent problems of decision-making by
people with severe cognitive disabilities (p. 13). The report causes this talented
international group to sound like earnest teenagers making grand global plans based on
three months' experience in a youth project helping elderly widows by tidying their
gardens on Saturday afternoons. It can be paraphrased briefly as follows:
Lovely, Cool, Refreshing CBR
There shall be light,
There shall be love,
There shall be bubbles,
There should definitely be a budget.
There shall be music,
There shall be singing,
Everywhere there shall be ramps,
Braille, sign interpreters,
And a specially-made toilet,
of Italian design,
Which remains perfectly clean,
Because nobody knows how to go on it.
Everything will be wonderful,
When we have CBR.
[8] The difficulties of such an undertaking should not be underestimated. Independent
symposia in 1998 assembled disability researchers in Bonn, with a focus on international
cultures and concepts (Holzer et al, 1999), and in Harare, with a Southern African
development focus (Cornielje et al, 1999). Researchers with much contiguity of
experience and interest were meeting, often for the first time. In both events, participants
struggled for several days to hear each other's meanings, across frontiers of concept,
culture and language medium. Capability in at least two of six major languages used
across Africa should be a minimum requirement for such occasions, regardless of
professional interpreting services.
REFERENCES
Boucebci M (1981) Special education through neighbourhood centres in Algeria.
Assignment Children 53/54, pp. 153-163.
Brinkmann G (2004) Unpaid CBR work force: between incentives and exploitation. Asia
Pacific Disability Rehab. J. 15 (1) 90-94. To appear at:
http://www.aifo.it/english/apdrj/apdrj.htm
Burck DJ (1989) Kuoma Rupandi (The Parts are Dry) . Leiden: African Studies Centre.
Cornielje H, Jelsma J & Moyo A (eds) (1999) Proceedings of the Workshop on Research
Informed Rehabilitation Planning in Southern Africa, Harare, Zimbabwe, 29 June to 3
July, 1998 , Leiden: Leidse Hogeschool.
Dommisse GF (1982) To Benefit the Maimed . Johannesburg: South African Orthopaedic
Association.
Finkenflügel H (1993) The Handicapped Community . Amsterdam: VU Univ. Press.
Finkenflügel H (2004) Empowered to differ . PhD thesis, Free Univ. Amsterdam. Also at:
http://www.enablement.nl/pdf/empoweredtodiffer.pdf
Gebremedhin T (1997) CBR: Challenging Beliefs and Resources . Addis Ababa.
Hartley S (ed) (2002) CBR. A participatory strategy in Africa . London: Univ. College,
Instt. Child Health. Also at: http://www.asksource.info/cbr-hartley.html
Helander E (1993) Prejudice and Dignity . New York: UNDP.
Helander E (1999, 2nd edn) Prejudice and Dignity . New York: UNDP.
Holzer B, Vreede A & Weigt G (eds) (1999) Disability in Different Cultures . Bielefeld:
transcript-verlag.
Ingstad B (1997) Community-based rehabilitation in Botswana . Lewiston, NY: Mellen.
Jadin O (2001-2002) La stratégie de Réadaptation à Base Communautaire au Bénin et au
Ghana . PhD thesis, Univ. Louvain-la-Neuve.
Lababidi L & El-Arabi N (2002) Silent No More. Special needs people in Egypt .
American Univ. in Cairo.
Lea SJ & Foster D (1990) Perspectives on Mental Handicap in South Africa .
Butterworths.
Marfo K, Walker S & Charles B (eds) (1983) Education and Rehabilitation of the
Disabled in Africa . Edmonton: Univ. Alberta.
Marfo K, Walker S & Charles B (eds) (1986) Childhood Disability in Developing
Countries . New York: Praeger.
Miles M (2003a) International strategies for disability-related work in developing
countries: historical and critical reflections. Zeits. Behinderung und Dritte Welt 14 (3)
96-106. Also at: http://www.uni-kassel.de/zeitschriften/beh3w/ausgaben/ZBDW3-2003
Miles M (2003b) Disability & Social Responses in Some Southern African Nations ... A
bibliography, with introduction and some historical items. At:
http://cirrie.buffalo.edu/bibliography/
Miles M (2004) Locating deaf people, gesture and sign in African histories, 1450s 1950s. Disability & Society 19 (5) [531-545].
Myezwa H & M'kumbuzi VRP (2003) Participation in Community Based Rehabilitation
Programmes in Zimbabwe: where are we? Asia Pacific Disability Rehab. J. 14 (1) 18-27.
Also at: http://www.aifo.it/languages/english/apdrj/apdrj.htm
Ndaziboneye B (2002) People with disabilities 'owning' CBR. In: S Hartley (ed) CBR. A
participatory strategy in Africa , 106-116.
Nesbitt MB (1956) The Road to Avalon . Johannesburg: Central News Agency.
Nesbitt MB (1958) Avalon Adventure . Cape Town: Timmins.
Schmaling C (2000) Maganar Hannu. Language of the hands . Hamburg: Signum.
Sebeh AG (1996) Evaluation of community based rehabilitation for disabled children in
urban slums in Egypt. PhD thesis, Univ. London.
Sebina DB & Kgosidintsi AD (1981) Disability prevention and rehabilitation in
Botswana, Assignment Children 53/54: 135-152.
Silla E (1998) People Are Not The Same. Leprosy and identity in Twentieth-Century Mali
. Portsmouth, NH: Heinemann.
Sorin-Barreteau L (1996) Le Langage Gestuel des Mofu-Gudur au Cameroun , Doctoral
thesis, Univ. Paris V - René Descartes.
Stannus H (1914) Congenital anomalies in native African race. Biometrika 10: 1-24 +
plates.
Tamm R, for Norwegian Association of the Disabled (2000) Final report. Ghana
Community-based Rehabilitation Programme. [Oslo: NAD] http://www.atlasalliansen.no/atlas-alliansen/doc/rapporter/Gha0003rapportTamm2000.doc
Vanneste G (2004) Current status of CBR in Africa: a review. Zeits. Behinderung und
Dritte Welt 15 (1) 11-17. Also to appear at: http://www.unikassel.de/zeitschriften/beh3w/ausgaben/
Werner D (1998) Nothing About Us Without Us. Developing innovative technologies
for, by, and with disabled person. Palo Alto, CA: Healthwrights.
WHO DAR (2003a) Disability and Rehabilitation Status. Review of disability issues and
rehabilitation services in 29 African countries. Geneva: WHO. [Publication status
unclear].
WHO DAR (2003b) Report of the International Consultation to Review Communitybased Rehabilitation (CBR) . WHO/DAR/03.2. Geneva: WHO.
http://www.who.int/ncd/disability/publications.htm
Disability and human rights in Latin America
By Luis Fernando Astorga Gatjens (lferag@racsa.co.cr)
More than 50 million persons with disabilities live in the Latin America and the
Caribbean, where the vast majority live under harsh poverty and unbearable social
exclusion. People with disabilities are among the poorest of the poor and their progress
toward economic and social development is very slow and uncertain.
On the other hand, even though there have been studies and data collection efforts,
persons with disabilities in developing countries remain invisible and unrecognized.
There is still the notion in some places that the issues regarding the presence of disability,
is a private or at least a family matter. And, if recognized within a larger scenario,
disability becomes the subject of charity. So there is this "calling to the heart of society,
for help..." and, far from the correct human rights approach, persons with disabilities
become victims of Telethons and similar public campaigns.
The definition of disability as a human rights issue, is rather new in the legal arena. The
dates of approval of the disability legislation of most Latin American countries, reveal
that we are still dealing with an innovation. Yet, the situation is still more profound:
though important, more laws do not solve the real problem. Who assumes the
responsibility for the changes in accessibility that persons with disabilities urgently need?
Many countries in Latin America and the Caribbean have approved legislation, but there
is no effective compliance. So there is this divorce between practice and theory.
If there was a more rigorous effort to warrant compliance with human rights, many of the
situations presently faced by persons with disabilities, including discrimination and
neglect, would be reported and duly treated as a violation of civil and political, as well as
economic, social, and cultural rights.
The fact that conditions needed for persons with disabilities to exercise basic human
rights such as accessible voting (ballots and voting spaces), and conditions that would
permit them to become candidates for public positions, confirms that in many countries
they still are not considered full citizens. This lack of citizenship is also found in some
countries where persons with disabilities are not allowed to own property or to inherit.
This list of violations also includes the lack of access to quality education that would
surely improve the life of persons with disabilities. There is also a great need for the
elimination of obstacles, such as discrimination and social barriers, that prevent persons
with disabilities from achieving their full potential. Services like improved health and
rehabilitation, accessible transportation and public spaces, need to be introduced and
expanded to ensure personal and social development of persons with disabilities.
Compliance with the human rights of people with disabilities is still weak. Unfortunately,
most public authorities and institutions just do not recognize, act upon or take into
consideration the legal rights and human needs of persons with disabilities. There may be
laws, but not a disability policy, there may be a policy, but no budget, and always, there
is the lack of a long term official commitment.
In Latin American and Caribbean countries, we have found a serious lack of public
policies and strategies specifically addressing the needs of persons with disabilities
within their National Development Plans. So, when there are no programs, projects and
effective actions in the disability area, this sector feels left out, and it is also the same
results: No planning or programs that are adequately put into practice.
How can we change this panorama of repeated and systematic violations of human rights
against persons with disabilities? First, get involved. Find out what is going on. Look for
reliable data: more complete information is always useful.
Second, look for and sponsor public policies that effectively address the needs of persons
with disabilities. There is a compelling need to better plan and use existing resources to
combat poverty, which particularly hurts persons with disabilities. We need to develop
programs, projects, and actions that will have a real impact on improving the present
living conditions of persons with disabilities in Latin America and the Caribbean.
Another important element is the need to strengthen the organizations of persons with
disabilities, so their programs and actions really achieve the proposed goals of a society
for all, including the active and organized participation of persons with disabilities and
their families. This is a vital consideration for the really global advancement of human
rights.
When the Presidents and Heads of State if the countries of Ibero-America, declared 2004
the Ibero-American Year of Persons with Disabilities, they assumed a serious
commitment in improving the quality of life of their societies and in the promotion of
human rights.
This year should not, and may not conclude without governments establishing solid
foundations for change. The hard difficulties prevailing in this sector need such changes,
and the long waiting on the part of persons with disabilities demand them.
Viewpoint: Where we are in the process of developing a
UN Disability Rights Convention
By Luis Fernando Astorga Gatjens (lferag@racsa.co.cr)/ Special Report for Disability
World
Now that the sessions of the Third Meeting of the UN Ad Hoc Committee are over, it is
necessary to make a balance regarding the advances and achievements, obstacles and
problems, together with the challenges and perspectives. That is my purpose with this
special report.
As planned, the Third Session of the Ad Hoc Committee established by the United
Nations to work on a Comprehensive and Integral International Convention on Protection
and Promotion of the Rights and Dignity of Persons with Disabilities, was inaugurated on
May 24.
This event was held at the headquarters of the United Nations in New York, for two
weeks, the first session lasted five days and the second session four days. There was no
formal meeting on May 31, because of Memorial Day and the event concluded on Friday,
June 4.
Representing 140 countries, more than 200 persons from disability-related non
governmental organizations and UN Specialized Agencies, gathered to participate and
advance in this negotiation process, aimed at the eventual approval of a new human rights
international treaty.
One major difference of this Third Meeting of the Ad Hoc Committee, compared to the
First Meeting of July-August 2001 and the Second Meeting of June 2003, is that there
was a Preliminary Draft of a convention text, prepared by the Working Group (January 5
to 16, 2004).
The appointment of this Working Group was one of the two most important
achievements of the Second Meeting of the Ad Hoc Committee. The other achievement
was the recognition that we, the more than 600 million disabled persons of the world,
need an International Convention on Disability Rights. Though an important step in
laying the foundation for the process, the First Meeting of the Ad Hoc Committee, held in
August-September of 2002, did not yet recognize the urgent need for an international
treaty on disability rights.
Procedures, agenda and general development
The negotiations for this Third Meeting of the Ad Hoc Committee followed the general
United Nations procedures. The delegates reacted to the first reading of the Draft, by
advancing criteria and comments, additions and preliminary modifications, to parts of
articles, complete articles or partial or complete elimination of some articles.
The Draft for the Convention has a Preamble, 25 substitutive articles and 114 footnotes.
These footnotes were recorded to include the topics in which the Working Group did not
reach consensus and several proposals left for further consideration. The Ad Hoc
Committee considered them a major contribution to its discussions.
It was not expected that definite texts had to be negotiated or achieved from this first
reading. The purpose of this first reading was to present and collect the ideas and
opinions expressed by the government missions.
On the second reading, the purpose was to move on with the approximations to particular
positions and to meeting points among the texts. Then, the third and final reading, is
derived from the complete redaction, idea by idea, sentence by sentence and, in some
cases, word by word.
The procedure established by the Chair of the Ad Hoc Committee with respect to the
participation of the delegations, was the following: On each article or topic presented and
debated, once the governmental delegations had intervened, then it was the turn of the
specialized agencies of the United Nations (the International Labor Organization, the
World Health Organization or UNICEF, for example). Thereafter, the representatives of
the nongovernmental organizations presented their ideas and opinions.
The difference between the proposals of the governmental delegates and the proposals of
the specialized agencies of the United Nations and those of the non governmental
organizations is that the first were kept on record to be considered during the second
reading, while no record was kept of these other proposals and opinions.
At the beginning of this Third Meeting, Dr. Luis Gallegos, Chair of the Ad Hoc
Committee, the documents were to be interpreted and rewritten and a systematic effort to
advance positions and prepared for the Second Reading, where diverging and emerging
elements would be duly resolved or left for the final third Reading.
On the first session, May 24, A motion presented by Mexico and accepted by the group,
left the discussion of the Preamble and Article 3 on Definitions to the end, so we would
begin reading and discussing the other articles contained in the Draft Document presented
by the Working Group.
During the first week work advanced fine. We were able to review 18 of the 25 articles of
the Draft. That is 3 to 6 articles per day. On the second week, we were able to review 7
articles more and the Preamble for the International Convention. The article with the
Definitions and Article 25 on Supervision, remained pending for the Second Reading.
The Chair of the Ad Hoc Committee had worked on some proposals to be discussed at
the informal meetings to be held the last day of the sessions. But this idea was not
implemented because some State delegations from Asia and Africa opposed the
participation of representatives of nongovernmental organizations in these informal
meetings. So, the last day was used to discuss the Preamble and the approval of the
Report of the Third Meeting of the Ad Hoc Committee in the Plenary Session.
Article by Article
First week: The following articles were presented and discussed during the first week.
Article 1: Purpose
Article 2: General principles
Article 3: Definitions (Discussion postponed)
Article 4: General obligations
Article 5: Promotion of positive attitudes toward persons with disabilities
Article 6: Statistics and data collection
Article 7: Equality and Non-discrimination
Article 8: Right to Life
Article 9: Equal Recognition as a Person Before the Law
Article 10: Liberty and Security of the Person
Article 11: Freedom from Torture or Cruel, Inhuman or Degrading Treatment or
Punishment
Article 12: Freedom from Violence and Abuse
Article 13: Freedom of Expression and Opinion, and Access to Information
Article 14: Respect for Privacy, the Home and the Family
Article 15: Living Independently and Being Included in the Community
Article 16: Children with Disabilities
Article 17: Education
The Second Week : The Preamble, the topic of International Cooperation, and the
following articles, were presented and discussed during the second week. These are based
on an article proposed by the delegation of Mexico:
Article 18: Participation in Political and Public Life
Article 19: Accessibility
Article 20: Personal Mobility
Article 21: Right to Health and Rehabilitation
Article 22: Right to Work
Article 23: Social Security and an Adequate Standard of Living
Article 24: Participation in Cultural Life, Recreation, Leisure, and Sports
International Cooperation
Preamble
Agreement and Controversy
There were important debates during these sessions, at which converging, differing and
even contradictory positions were manifested by the sectors participating in this process.
Without being exhaustive, the list of topics that prompted more discussions included the
following:
The nature of the Convention : Regarding this point, some delegates leaned toward a
Convention on Non discrimination, which would be less demanding for States. Whereas,
the majority of the participants wanted and demanded, including representatives of the
nongovernmental organizations, a wide scope, human rights and social development
instrument, as it is established by the General Assembly of the United Nations. Though
some delegates still insist on nondiscrimination as the central part of the Convention, the
majority have emphasized that the purpose of the new international treaty is to ensure
human rights for persons with disabilities.
This debate was heated; it led to a strong confrontation by the Mexican delegation
accusing the delegation of the European Union of trying to mutilate the text in an effort to
make it less demanding.
Wider principles : There is a felt need to widen the coverage of the article on the
principles for the new treaty to include accessibility, inclusion, and participation of
persons with disabilities, not just their inclusion in all sectors of society. Some delegates
expressed that to increase the coverage of the principles of the new treaty, the words "and
their families" should be added.
Obligations : In addition to the obligations proposed by the Working Group to improve
the living conditions of persons with disabilities, some delegations express the need to
include international cooperation as one of the obligations of the States. Also, some
delegates manifested that the States have special obligations toward persons with
disabilities during and after armed conflicts, natural disasters, and conditions such as
refugees, poverty and extreme poverty.
Privacy vs. Data collection : The discussion regarding the convenience of including or
not the topic of data collection on persons with disabilities in the Convention was
postponed. Some delegates consider that data collection is not a right, furthermore, the
way that data and statistics may be manipulated could create discrimination and violate
privacy. Other delegations stressed that, though data and statistics do not constitute a
right, there is a need for them, to better know the situation of persons with disabilities,
and to establish whether there is fulfillment with respect to existing norms (as in the case
of surveillance and monitoring). Both groups recognized the importance of respecting the
right to privacy and that it should be paramount within data collection efforts.
Equality and non-discrimination : During the discussion of this article, some delegates
emphasized the need to establish the difference between equality and non- discrimination.
They also expressed the need of including both concepts in the new Convention.
Reasonable accommodations: Some delegations did not want to include the concept of
reasonable accommodations in the International Conventions, meaning that it should not
be subordinated to the fulfillment of human rights. For instance, the right to reasonable
accommodation should not be made dependent exclusively on economic feasibility.
The right to life as a human right: This became one of the most controversial topics.
Some delegates consider that this right is already included in other conventions and
treaties and that it protects all persons. They also maintained that by specifically restating
it in the International Convention it would acquire a discriminatory characteristic. Other
delegations favored the need to include the right to life in the International Convention,
because many persons detected as having disabilities are eliminated before they are born.
The right to be persons before the law : When discussing this point, much was
mentioned regarding how persons with disabilities (particularly those presenting
intellectual and psycho and social impairments) are deprived of their rights to own
property or to inherit. There was a felt need to establish some type of mechanism, like a
third party representation, to protect the right to be a person before the law, in the case of
persons with extensive intellectual, and communication disabilities. In every case, all the
rights of the persons being assisted or represented by a third party much be respected.
Reject forced institutionalization: The topic of the institutionalization of persons with
disabilities emerged when discussing several articles of the draft text. In many cases
when institutionalization is mandated, the psychiatrist becomes a judge, it is a way of
locking people up, violating the most elemental rights like personal liberty, using
disability and linking it with a "possibility of committing a wrongful act." Some
delegates, the majority representing nongovernmental organizations, did not want to
allow dispositions in the new International Convention, that would be used as legal ways
to continue violating the fundamental rights of persons with disabilities.
Information and communication : On this topic, it was indicated that freedom of
opinion and expression is contemplated within other international instruments. What
must be stressed is that persons with disabilities need and therefore are entitled to, full
access to means, resources, and opportunities to express their opinions and to access
communications, including sign language, Braille, and information technology, which
should be made available. The group emphasized the importance of reducing the digital
divide and fostering new information and communication technologies. This digital
divide is more profound among persons with disabilities living in developing countries.
Privacy: It was emphasized that persons with disabilities were often denied their right to
privacy, both at home and at institutions. There is a need to provide protection to persons
with disabilities regarding their communications, information, and documentation. There
is a felt need to ensure "adequate measures to eliminate discrimination against persons
with disabilities with respect to their emotional and family relationships." The provisions
needed include: equal opportunities to enjoy sexuality, maternity, and paternity, to
develop love relationships, and the spacing of children, among others.
Independence and community : Here emphasis was made on the right of every person
with disabilities to make decisions regarding personal affairs, including where and how to
live, except in the case where the type of disability greatly affects decision making. The
point to make clear is that independent living does not mean that the person wants to be
isolated or does not need others, it only means that persons with disabilities should have
the right of making their own choices and have control over their lives. This is the best
way of promoting their full development and inclusion in social life and the community.
Children with disabilities : Some of the delegations felt there is a need to include a
specific article on the rights of girls and boys with disabilities. Other delegations stated
that the Article 23 of the International Convention on the Rights of the Child was
sufficient.
Those oppose to including a special article on children with disabilities in the new
international instrument, argued that by doing so, there would be a need to redact a
specific article for women, senior citizens, and other groups. This would create the
problem of establishing limits or going beyond the purpose of the International
Convention on the Rights of Persons with Disabilities.
The debate continued with other delegates mentioning the possibility of creating a single
article in which to include each of the vulnerable groups that need to be protected against
discrimination and exclusion.
There is a need to include gender implications across all of these sectors of the population
and not just restricting it within a specific article.
Education : It was emphasized that education needs to be recognized as a fundamental
right that has to be extended to persons with disabilities during every stage of their lives.
Education has to be inclusive, and options for special education must be made readily
available for students who need it. Efforts must be made to make available technical aids
and support services, so persons with disabilities may benefit from education and
learning experiences.
Participation in political life: The group decided that this article should not be
restricted to accessible voting spaces and ballots. This International Convention must
foster the full political participation of persons with disabilities at all the stages of the
political process, including the access to programs, political messages and the right to be
included by political parties and electoral authorities. Persons with disabilities should be
able to participate as pre candidates and candidates for public offices, particularly those
positions more closely related to disability
Accessibility: The emphasis was made that State Parties need to interpret accessibility
from a wider perspective, not just the access to physical public spaces. Accessibility
includes access to public and private spaces, and as some delegates indicated, it also
includes the services and the information provided therein, and even if an institution or
service is privatized, the right to full access must be respected.
Health and rehabilitation: All delegations agreed that the International Convention
should protect and even expand the right to health and rehabilitation for persons with
disabilities. The real discussion was if health and rehabilitation would be better served if
divided and organized into separate articles in the final text, as some delegates preferred
or if they should remain within the same article, as defended by other delegates.
The delegates proposing to cover health and rehabilitation in separate articles stated that
the field of rehabilitation exceeds the field of health, and that rehabilitation should not be
limited to just one of several health services. On the other hand, those who defended the
position of keeping health and rehabilitation within a single article, do understand that
rehabilitation is not just another health issue yet, pointed out that, if they were to be
placed in separate articles in the new treaty, there is a danger of disrupting long range and
long standing programs where both components are closely interrelated and function as
part of a single integrated process. For instance, in most developing countries health and
rehabilitation services operate as single programs, persons with disabilities run the risk of
just receiving the health component if the rehabilitation component is moved to another
category.
Work: The whole discussion of this article served to underline the importance of having
a source of employment for the majority of persons, including persons with disabilities,
who are entitled to a decent and fairly paid job and who need to make their contribution
to society. Having a job is not just something that provides a source of income, it may
mark the difference between independence or confinement. Delegates recognized the
importance of creating adequate professional or technical training opportunities for
persons with disabilities. Also, since work is also a fundamental human right, State
Parties and society as a whole, should foster the employment of workers with disabilities
by, among other means, reasonable accommodations in the work place, flexible
schedules, and improving hiring practices. Other ways of promoting persons with
disabilities in the work market include, access to credit for small enterprises or creating
cooperatives. Affirmative action and other similar initiatives also improve the work
opportunities for persons with disabilities.
Living conditions and social security: Some participants wanted to divide this article
into two articles: one dedicated to the right of persons with disabilities to enjoy an
adequate standard of living, and another article dedicated to those measures that States
should consider, as part of social security, to ensure such a standard of living.
International Cooperation
The topic of International Cooperation has been running along the whole process,
particularly at this Third Meeting of the Ad Hoc Committee. What happens is that it
means different things for different participants in this New York meeting. Yet everyone
recognizes its importance for the International Convention on the Rights of Persons with
Disabilities, particularly because of the close link of disability and poverty. In this
dimension, international cooperation must be included in the new treaty as an instrument
to combat poverty and exclusion which prevent persons with disabilities from fully
participating in society. Here member States must recognize that international
cooperation is not just financial, it includes a wide range of options, where financial
resources may or may not be equally significant.
On the document prepared by the Working Group of the Ad Hoc Committee,
International Cooperation is presented in Section g of the Preamble: " International
Cooperation should be emphasized as a way to foster full exercise of human rights and
fundamental liberties by persons with disabilities." Now, in order to stress the importance
and the results thereof, the majority of the representatives want International Cooperation
as an article of the Convention.
The delegation of the European Union, which put forward so many reservations during
the meeting of the Working Group last January, did agree to include International
Cooperation as an article of the Convention. The delegate from Ireland, representing the
European Union, suggested the following text: "With respect to economic, social, and
cultural rights, the States Parties shall adopt the corresponding measures pursuant to its
resources available and, as necessary, they may look for international cooperation."
Though they recognized the importance of this change of posture, many delegations
insisted on including International Cooperation in other articles, such as the ones
dedicated to the principles and general obligations, while other delegations point to a
need for a specific article on International Cooperation.
Mexico, one of the States more strongly defending this position, presented an article on
International Cooperation, as a necessary condition to ensure that persons with
disabilities may exercise and enjoy their human rights and fundamental liberties.
The text presented by the Mexican delegation includes different forms of cooperation and
describes activities which may be performed to generate conditions to foster human
rights, particularly those linked with economic and social rights.
This means that there is a need to correct the misinformation that International
Cooperation only means North to South financial support. It was also made clear that the
obligations of the States Parties to this International Convention may not be subordinated
to the achievement of International Cooperation.
All indications are that the discussions held on the day before the last of the sessions, did
contribute to converge opinions and, though we still do not have a final determination on
what this International Cooperation should be, progress was made.
The Participation of NonGovernmental Organizations
As they did during previous meetings of the Ad Hoc Committee, nongovernmental
disability organizations played a major role. Their number had increased and their level
of expertise had also improved.
At this Third Meeting of the Ad Hoc Committee, there was the participation of more than
200 hundred delegates from nongovernmental organizations from countries of every
continent. Additionally, some of the members of delegations of the State Parties were
persons with disabilities who were active in nongovernmental organizations.
From the beginning of the International Convention process, the participation, work, and
commitment of the nongovernmental organizations has been recognized. Surely, without
their effort, much of the progress described, including the draft document, would not
have advanced as much it did.
Such participation opened wider participation venues by persons with disabilities within
the United Nations. There has also been a great level of activity and building up efforts
on the part of international, regional, and national nongovernmenalt organizations, and all
of them inspired by the words: Nothing about us without us! The participation of
disability organizations within the events of the United Nations has also contributed to
refreshing and making more democratic this international body, that needs much
strengthening.
As in previous meetings, the President of the Ad Hoc Committee, noted appreciation of
the contributions of the representatives of nongovernmental disability organizations. The
interventions at these meetings follow a defined procedure, the nongovernmental
organizations have an opportunity to comment on each article of the draft document.
They would do so, for each article, after the interventions of the delegations of the State
Parties to the International Convention and after the interventions of the United Nations
specialized organizations. In fact, some government delegates struggled to permit the
interventions from disability organizations only at the end of the morning and afternoon
sessions.
After the introduction made by President Gallegos, there was a large participation from
members of nongovernmental organizations, more than 80 interventions, based on their
accumulated expertise and strong levels of commitment and coordinated work. The work
of the disability community was coordinated by a series of caucus meetings, sometimes
among themselves, others held together with specific State delegations to obtain more
support.
There has been this general practice of allowing only the participation of government
delegates at informal meetings, which are very important for further debating and
negotiation work. The nongovernmental organizations have tried to change this practice,
because they believe that they are able to make valuable contributions in the informal
meetings.
One day before the last of the end of the Third Meeting, the President of the Ad Hoc
Committee proposed that work for the next day (June 4) would begin in informal
meetings, advancing with the agenda of the second reading, yet including the
representatives of the nongovernmental organizations at the informal meetings. This
innovative proposal was supported by the majority of the States, recognizing that the
presence of the representatives of the disability community would constitute a
contribution to the process.
Nevertheless some States (African and some Asian States) disagreed with having
representatives of nongovernmental organizations at the informal meetings. At the end an
apparent agreement was achieved and these representatives were allowed to participate at
the informal meetings of the next day. Yet as time went by, the opposition to the wider
participation at informal meetings, presented a series of technical arguments, including
how much public or private should informal meetings be. So, due to a lack of consensus,
President Gallegos suspended the informal meetings and work was continued as a
Plenary Session, with the Preamble, as it was agreed, discussed at the end with other
pending articles.
Then some delegations stated that they would abstain from participating in the Preamble
debate because they were not ready, because they thought they were going into the
informal meetings and prepared for those. Other delegates insisted that the Chair must
respect the decision made on the day before starting to discuss the Preamble. Even one of
the members of the Costa Rican delegation requested the Chair to clarify that this
situation would not establish a precedent with respect to the whole process.
So, the nongovernmental organizations must continue working very hard during this
period until the Fourth Meeting of the Ad Hoc Committee, to be held at the end of this
month. They have to move quickly to influence the States and to increase their
participation at all scenarios of the treaty negotiations, including their right to participate
in the informal meetings, which will become more relevant for the further development
of the process.
Perspectives
Now within the Final Text worked on by the Third Meeting of the Ad Hoc Committee,
there are the ideas reached as consensus by the Working Group, together with the
contributions from many of the 140 government delegations participating in the debates.
Such numerous and wide range of the representations support the legitimacy of these
final conclusions. All of which came to being thanks to the active participation of persons
with disabilities acting as members of State delegations or representing nongovernmental
organizations and from some United Nations agencies. Here we should mention the
working documents prepared by Dr. Luis Gallegos.
It was agreed that the Articles on "Definitions" and "Supervision", and "Monitoring
Mechanisms", together with other emerging topics from these two weeks of May-June
2004, would be discussed at the Fourth Session of the Ad Hoc Committee.
We are approaching the perhaps the richest, most complex and challenging part of this
Convention process. Here consensus must be achieved, both at the Plenary Sessions as
well as at the informal meetings, headed by facilitating delegations. Our hope is that the
active and constructive participation of nongovernmental organizations will be a major
contribution as it has been the main characteristic of this process.
If work and negotiations are readily conducted, the second reading could be concluded in
the August Meeting. Then we would have completed another important advancing stage
toward an International Convention to promote and protect the rights of persons with
disabilities. If we are able to move efficiently, we could have the International
Convention approved during the Spring of 2005. This will coincide with a major meeting
of Presidents and Heads of States to review, in New York, the work performed on the
Millennium Goals of the United Nations.
I am optimistic, because the passion of our convictions indicates good results. Yet it is
still very early for ringing bells. During this Third Meeting, some discrepancies emerged,
both at the discussions and in the case of some procedures used. Beyond our optimism,
some obstacles may become challenging and could present further delays for approving
the International Convention.
Now it is important that the process keeps on advancing, in a sustainable manner, without
interruptions or drawbacks, so we may soon have an international treaty to improve the
lives of persons with disabilities and allowing the full exercise of their human rights.
RI Congress on Rethinking Rehabilitation: Overview of
Keynotes
By Barbara Duncan (bjdnycla@aol.com)
The four- day intensive program, June 21-24, was developed around invited plenary
presentations and parallel sessions addressing the theme of "Rethinking Rehabilitation"
from various points of view. The Congress team, led by President Kirsti Kolle Grondahl
and Arne Heimdahl, President of RI Norway, and Ann-Helen Bey, Chair of the Program
Committee, reviewed hundreds of abstracts and biographies of suggested speakers.
Recently the plenary presentations and abstracts of other presentations have been placed
online at the Congress website: www.ri-norway.no/text/view/1802.html
Following is an overview of some key threads, points and flavor of some of the plenary
presentations of specialists from Europe, Africa, North America, the Arab region and
Asia.
After an uplifting video message in support of disability rights from Ms. Mary Robinson
, former UN High Commissioner for Human Rights and former President of Ireland, Prof.
Tom Shakespeare of the UK Policy, Ethics and Life Science Research Institute,
challenged the participants to think through the complexities and contradictions of some
of the new genetics policies being advanced in some countries vs. the human rights
platforms gaining support from the same governments in the quest for a UN convention
on human rights of people with disabilities. Shakespeare also pointed out the
discrepancies between the current focus on impairments caused by genetic
"misspellings," representing a small portion of the "disability pool," and the global
realities, where 30,000 children die each day due to preventable diseases.
Update on Uganda
The situation of disabled people in Uganda was explored by two speakers. Uganda's
Minister for of State for Elderly & Disability Affairs, Florence Nayiga Sekabira,
explained the quota system adopted nationwide to enable election of thousands of people
with disabilities to positions on local councils up to the national Parliament. Concerning
the role of disabled Parliamentarians, Sekabira outlined several responsibilities: to make
laws for effective governing of the Republic of Uganda, to initiate and influence laws and
policies in favor of people with disabilities, to mobilize disabled Ugandans for
development and to lobby for effective service delivery to people with disabilities. Prof.
Susan Reynolds Whyte of the Institute of Anthropology, University of Copenhagen,
who conducted fieldwork for many years in Uganda and East Africa, recounted an
interesting case study of numerous disabled Ugandan entrepreneurs who have obtained
tricycles to develop a cross-border service, providing self-sustaining livelihood for
themselves and their families, and at the same time creating an effective disability
lobbying group on the national level.
Intractable: Poverty & Disability
Other speakers concentrated on the so far intractable problems created by the interface
between disability and poverty. Gro Harlem Brundtland, former Prime Minister of
Norway, and, most recently, Director General of the World Health Organization,
reviewed how investments in health services were directly attributable to growth in some
of the fastest moving economies of Asia. Brundtland emphasized that "The Nobel
economics prize laureate, Amartya Sens defines poverty as 'deprivation of capability,'
arguing that people are poor not just because their income is low, but because they do not
have access to basic services such as health and education, which would increase their
freedom." She summarized: "A majority of disabled people are among the very poor-living on less than a dollar a day...At least 20% of the poorest people in the world are
disabled...Combating poverty implies preventing ill health and disability, and
empowering people with disabilities to be full participants of society."
Speakers Judy Heumann, Disability Advisor for the World Bank, and Venus Ilagan,
Chair of Disabled People's International, echoed the need for increased and immediate
attention to improving data and analysis about the interrelationships between disability
and poverty. Ilagan stated: "Disability groups in developing countries lack economic
expertise, so they have not yet developed a persuasive case for including disability in
development thinking on economic grounds." She believes the discussions about the UN
convention could provide unprecedented opportunities to bring this topic to the attention
of the highest levels of governments and concluded that: "We are fortunate to live at a
time when global leaders in every corner of the world are discussing disability in a way it
has not been discussed before."
Have you done enough?
Lars Odegaard, chair of Atlas Alliance, the Norwegian umbrella group of domestic
disability groups involved in international development work, and officer of the
Norwegian Association of the Disabled, a membership-based advocacy group, strongly
challenged all present at the Oslo Congress, whether they were sitting in soft chairs or on
soft tires, to ask themselves if they had done enough to changes the dire situation of
disabled people in developing countries. He commented about receiving various reports
in recent years about plans for change from government agencies, disabled people's
organizations and non-governmental organizations, all worded in the correct terminology,
but he wondered whether any radical changes had occurred in actuality. Odegaard
summarized that Norway would continue to take a forward position in international
efforts to improve the situation of people with disabilities in poor countries.
Women & Children
Two other speakers honed in on the failure of initiatives thus far to improve the
deplorable situation of disabled women and children, left to fend for themselves in most
countries. Ms Sheikha Hessa of Qatar, the UN Special Rapporteur on Disability outlined
her priorities for the immediate future: disabled children and women, poverty and
increasing attention to those disabled by intellectual, developmental and psychological
impairments. She reported on a recent meeting of women with disabilities in Yemen,
reiterating that isolation was still a significant barrier to their participation in society.
Speaking with participants after her presentation, Ms. Sheikha Hessa stated she would
support efforts to develop outreach to disabled Arab women as part of the program for
RI's Arab regional conference in Bahrain in late 2005.
State Secretary Jan Otto Risebrobakken, representing Norway's Royal Ministry of
Health, defined the objectives of rehabilitation: "to provide physical, psychological and
social support in order to facilitate integration and participation." He commented that,
"One of the greatest challenges of rehabilitation on a global basis is to improve the
situation of women and girls with disabilities." One of the new Norwegian projects he
announced was a strategic plan developed by the Ministry of Health to provide
rehabilitation services for children "to ensure that children with disabilities, like all other
children, have a childhood that provides growth and development in everyday life."
Toxic impact of Exclusion
Finally, two speakers delivered heartfelt addresses that placed exclusion at the center of
the lived experiences of people with disabilities the world over. Bengt Lindqvist of
Sweden , retiring UN disability rapporteur, recalled his first meeting with the UN Human
Rights Commission, where he was asked to sum up the disability experience in as few
words as possible. After thinking through his visits to various countries, rich and poor, he
chose one word: exclusion. "If you study the situation of disabled persons in different
cultures, you will find exclusion is always present," Lindqvist said, continuing, "you will
come across thousands of ways and degrees of excluding people with disabilities, young
and old, from mainstream services and activities in our societies, even in affluent
countries. We will only put an end to exclusion by bringing disability related needs into
the mainstream of development."
Patricia Deegan, Ph.D., of the U.S., brought the same message home, based on her
experiences with psychiatric and mental health services. She described how her early
interaction with these services resulted in the exclusion by rehabilitation professionals of
all other considerations of her personality, life experiences, skills and aspirations. She
recalled, "When I was 17, and still in my final year of high school, I experienced
psychosis and was brought to a mental institution. Once there, I was diagnosed with
schizophrenia. Once diagnosed, the label...took on a master status in terms of my identity.
The fact that I was a good athlete, that I enjoyed being in nature, that I was the oldest
child from a large working class family, was of little interest to the professionals around
me...Re-thinking rehabilitation means getting on with the work of reforming the
infrastructure of rehabilitation policy and funding so that the self-directed care
opportunities are available to all people with disabilities. It is the means through which
we can be self-determining. It is the way that those of us with disabilities can exercise our
freedom to be incurably ourselves."
In summary, the plenary speakers in the RI Oslo Congress were articulate in what has
been achieved on the global level, in pointing out some of the most effective practices,
and in reminding us eloquently about priorities that still need to be addressed.
Conclusions of the Ibero-American Seminar on the
theme, "2004: An Opportunity for Persons with
Disabilities"
Held in Santa Cruz de la Sierra, Bolivia, March 29 to April 2, 2004
Organized by: IMSERSO Ibero-American Inter-governmental Network for Technical
Cooperation (Red Intergubernamental Iberoamericana de Cooperación Técnica,
RIICOTEC), the Ibero-American Network of Organizations Persons with Disabilities and
their Families (Red Iberoamericana de Organizaciones de Personas con Discapacidad y
sus Familias, RIADIS) and the Spanish Agency for International Cooperation (Agencia
Española de Cooperación Internacional).
The movement of organizations of persons with disabilities and their families feels very
proud regarding the wide acceptance, by the presidents and heads of State and the IberoAmerican community, to the proposals presented by the Ibero-American Network of
Organizations of Persons with Disabilities, to declare 2004 the Ibero-American Year of
Persons with Disabilities. Here in Latin America, the success of this year will depend on
the strong commitment manifested by the governments, the civil society, and the
organizations of persons with disabilities and their families.
The celebration of the Ibero-American Year of Persons with Disabilities cannot be
just well intended rhetoric and declarations, or some isolated activities here and there.
This year must be full of effective actions that will structurally change present conditions.
Disability must become part of the political and social agendas.
In Latin America, the situation of persons with disabilities and their families is
characterized by the most severe social exclusion, poverty, discrimination, and
absence of equal opportunities . It calls for governments to adopt stronger, more
ambitious, and sustainable public policies leading to structural changes within a system
that is neither fostering human dignity nor promoting the quality of life in our societies.
Poverty and disability sustain one another. Poverty generates and worsens the effects
of disability and, particularly in Latin America, disability is associated with poverty. This
means that disability must be introduced within every policy, program, and plan, and
always a part of the human and social development to be promoted in our countries.
The new disability public policies for Latin America must be based on disability as a
human rights issue . And, from there on, persons with disability must by recognized as
individuals having full rights and the consequent effects derived thereof.
Disability belongs within the sphere of human rights, equal opportunities, and the
principle of non discrimination. Here we must stress that persons with disabilities are
entitled to human rights. Yet, there is still the need to define these rights more clearly, so
they become understood as important and binding. Also, there is an urgent need for
budget and combined efforts to fulfill these rights, which are universal. Conditions
generating discrimination must be eliminated. Persons with disabilities need full
participation, and to achieve it, the following vital areas must be effectively addressed:
early intervention, education for all, real job opportunities, health and sanitation services,
among others which are part of the fundamental human rights, including better relations
with national and local administrations.
The existing disability related legislation in Latin America is characterized by
dispersion, by the proliferation of fragmentary laws, and the generalized
noncompliance. We need up to date, complete and comparative research on disability
legislation. New research must include indicators regarding how each country is fulfilling
its own disability related legislation. There is also a need to develop mechanisms to
introduce pertinent changes.
Addressing the needs of the families of persons with disabilities. An integrated social
protection system must be established, including due information, quality training,
homebound services, and the needed financial aid for families having members with
disabilities.
Participatory democracy calls for new public policies, including the recognition that
persons with disabilities must participate, through their organizations, in the elaboration,
consultation, approval, implementation, follow up, and evaluation of all plans and
programs affecting their lives.
Disability is both a social reality and a personal reality, plural, diverse and distinct.
Within the large populations of persons with disabilities there are some groups which are
more readily excluded and more frequently the victims of discrimination. Though human
rights are for all, the needs of these more vulnerable groups must be addressed more
urgently by effective public policies. These groups include Women with disabilities,
ethnic minorities, and girls and boys presenting multiple disabilities. Among these
groups there are: Persons with disabilities not able to represent themselves, persons with
disabilities living in rural areas or very far from centers of social and economical
influence, persons with disabilities subject to social stigma, as it is often the case of
persons with mental disease. Here we have a large variety of people being excluded and
discriminated because of their disabilities.
As in the rest of the world, full equal rights of persons with disabilities in Latin America,
will depend on how much they are willing to make their own decisions and how aware
they become about the importance of controlling their own lives. There is no
liberation without awareness. On a social dimension, persons aware of their potential
work together with others. This is how the movement of persons with disabilities and
their families is being built and strengthened.
It is essential that persons with disabilities have a strong and united social movement,
where diversity and democratic procedures are respected. This social movement must be
actively involved with other sectors and social actors.
In Latin America, notwithstanding many meritorious examples, the social movement of
persons with disabilities and their families still present weaknesses, fragility, and
fragmentation. There is a need of creating cross-disability organizations in the region
and stronger disability specific organizations in Ibero-America.
One of the basic objectives must be the expansion, strengthening, and orderly
functioning of the social movement of persons with disabilities in Ibero-America.
This is because the public policies and social changes will only be enacted with the
organized participation of persons with disabilities.
The Ibero-American Network of Organizations of Persons with Disabilities is part
of the social movement of persons with disabilities and their families. Its objective in
Ibero-America is to be influencial in the political decisions advancing social participation
and equal opportunities for persons with disabilities. This Network is a democratic,
associative, and representative action organization, that is open to all countries and
organizations of Ibero-America.
Here in Latin America, the Ibero-American Network also needs the support of
member countries and the participating organizations of persons with disabilities, and
other organizations in Latin America. As the social movement grows, so does the IberoAmerican Network of Organizations of Persons with Disabilities and their Families.
The organizations of persons with disabilities and the countries of Latin America must
plan and act jointly, within effective regional structures. This Network salutes and
appreciates the coordination with RIICOTEC, and hope that it will create projects and
other initiatives to improve the living conditions of persons with disabilities and their
families.
Developed countries, particularly the members of the European Union, must
reinforce their international cooperation policies by including disability issues.
Disability issues must be considered as part of the projects being sponsored. The
European Union and donor countries should demand that recipient nations comply with
disability requirements, including public disability policies and respect to approved
national and international instruments regarding accessibility and equal rights for persons
with disabilities. There should be an effective follow up mechanism to ensure that these
types of international cooperation schemes address the needs of persons with disabilities
in the Ibero-American nations.
The Inter-American and Ibero-American multilateral cooperation must include
disability as one of their major topics in their agendas. Regarding disability, these
major topics include ways to improve policies, the cooperation, health, employment,
justice, and human rights, among other areas demanding coordinated multilateral actions.
The Ibero-American Network of Organizations of Persons with Disabilities records
its optimism regarding the work undertaken toward the International Convention
on the Human Rights of Persons with Disabilities. I n support of these efforts, it calls
on countries and governments to join effectively and sincerely in this international cause.
The goal is to approve soon a wide-scope, legally binding international instrument. This
international convention must include efficient control and follow up mechanisms and
will specifically address social development and international cooperation needs.
The Ibero-American Year of Persons with Disabilities , being made a reality in each
country by means of a plan with objectives and indicators, must be understood as an
opportunity for effectively advancing at improving the conditions of persons with
disabilities and their families . It should become the basis for an intensive program
which will continue far beyond the end of the year.
Commentary by Secretary General of the Latin American & Caribbean Network of
Persons with Disabilities
Pilar Samaniego, Secretary General of the Latin American and Caribbean Network of
Persons with Disabilities, says: "Latin America is characterized by norms that do not go
beyond paper"
What is the role of the media during this Ibero-American Year of Persons with
Disabilities?
Media have a leading role. Yet, it is important to make sure that the focus and the
message content and context are correctly presented, and not overexposed. Too often the
way in which the press addresses disability topics follows a pity and emotion charged
paradigm, instead of promoting human dignity, the importance of human rights, the real
challenges, and efforts of persons with disabilities in creating a new society. On the other
hand, as we have many times used the media to expose poverty affecting persons with
disabilities, it is like if we use a raincoat that covers the more positive part. Then people
do not see all the information, so they do not become aware about what to do to improve
the living conditions of others.
Now, if we have persons with disabilities who know about their rights and if we had a
more conscientious public opinion, it would be much easier for citizens to exercise
control and influence governmental authorities to guarantee the fulfillment of rights and
to conduct remedies.
Is the creation of norms to guarantee rights a challenge?
Latin America is characterized by having norms and subscribing to international
agreements at summits that do not go beyond paper and that do not move from rhetoric-
laden declarations to concrete facts. This systemic noncompliance needs to be urgently
addressed by a social strengthening policy leading to changes.
What would be the objectives?
The objectives include, among other elements: train persons with disabilities and their
families, improve the organization of their social movements, guarantee that they are
democratically represented and allowed to participate at the formulation of national
policies, plans, and programs, including legislative and administrative dispositions and
social planning, approved as State mandates, not governmental measures.
Commentary by Representative of IMSERSO
José Carlos Baura, Sub Director of Planning, Ordering, and Evaluation of the IMSERSO:
"We want to promote the Movement of Persons with Disabilities in Ibero-America"
What is the role of IMSERSO during the Ibero-American Year of Persons with
Disabilities?
IMERSO has been very interested in collaborating in and playing an important role
during this Ibero-American Year of Persons with Disabilities. We are acting through two
converging perspectives: the Ibero-American Inter-governmental Network for Technical
Cooperation (Red Intergubernamental Iberoamericana de Cooperación Técnica,
RIICOTEC) and the support structure of the European Year of Persons with Disabilities.
What are the working areas available?
One working area is social awareness. It is very important to teach and create disability
awareness within society, including the wide range of problems and needs facing persons
with disabilities, which can be addressed by: equality, inclusion, accessibility, and by
knowing the national and international rights to which they are entitled. Social awareness
must be also focused on the common goal of rights for all in a society for all.
IMSERSO provides a long time experience...
We are conducting many courses and technical training activities for developing and
better use of national and international instruments. These study activities provide sound
information about what the situation of disabled people actually are in each country
and region. Then it is possible to advance into resources and means.
There will be many gathering opportunities, like the next Seminar of the Disability
Councils in Quito, Ecuador, next June. We have just met at a Seminar in Santa Cruz de la
Sierra, in Bolivia, and we are still working, like we worked in Spain, on a fundamental
aspect: the importance of the social movement of persons with disabilities. We want to
promote the social movement of persons with disabilities in Ibero-America.
Disabled Youth Leadership Training in Post Conflict
Resolution
By Bruce Curtis, World Institute on Disability (Bruce@wid.org)
In societies that have undergone recent war or civil society conflict, it is necessary to
build cooperative relationships between citizens and civil societies after the active
conflict is over. The development of cooperative and collaborative relationships between
regions in conflict must be founded on concrete, shared values and mutually beneficial
activities and outcomes.
Disabled persons and their representative disability NGOs historically find themselves
marginalized politically, economically and socially within their societies in times of
peace, and this marginalization becomes even more severe during and after times of
conflict. Disabled leaders in regions of conflict recognize that the political, economic and
social marginalization of disabled persons within their societies continues in times of
peace or conflict. War and civil conflict always create newly disabled veterans and
civilians who find themselves members of this marginalized sector of their societies
without the information, resources and skills to reintegrate themselves into society as
productive citizens. This lack of opportunities and resources in pre and post conflict
regions is severe enough to encourage leaders of disability NGOs to cooperate with all
available sources in order to obtain information, resources and technical assistance.
Therefore, disability leaders from regions previously in conflict often work across
borders of political and geographic conflict to establish cooperative relationships and
collaborative activities with other disability NGOs.
The Georgian Coalition of Disability NGOs and Veterans is a legally registered NGO and
is a coalition of 50 disability NGOs throughout Georgia working collaboratively to
protect the rights of disabled persons and promote their integration into Georgian society.
The Abkhazian Forum of Disability NGOs and Veterans is an informal coalition of 7
disability NGOs collaborating to protect the rights of disabled persons and promote their
integration into Abkhazian society. The Abkhazian Forum expects to receive its legal
status by early 2005.
Over the last 5 years, the Georgian Coalition and the Abkhazian Forum have established
communications and continue to share information with each other to achieve common
goals that promote the rights of disabled persons in each of their societies. This informal
exchange of information and resources has increased the desire of both disability
coalitions to further deepen and strengthen concrete, practical collaborative activities that
are based upon shared values and mutually beneficial outcomes.
With support from the Organization for Security and Cooperation in Europe (OSCE)
Mission to Georgia, representatives from the Abkhaz NGO AIS, and the Georgian
Coalition met in January 2004 in Moscow with representatives from WID and
Perspektiva and requested to be included in the training seminars and project activities of
the 3 year project to create an International Network of disability NGOs from Azerbaijan,
Armenia, Russia and Uzbekistan. WID had already included disability NGOs from
Armenia and Azerbaijan, other post conflict societies in the Caucasus, as collaborating
partners in project activities and the international network of disabled youth activist
teams. Therefore, WID agreed that the participation of the Georgian Coalition and the
Abkhazian Forum in the international project's activities would strengthen each disability
NGO's capacity to protect the rights and advocate for the integration of disabled persons
in their societies. In addition, their participation in the international network of
information exchange would further promote understanding and cooperation between
each other and could serve as a model for conflict resolution between civil societies in
conflict.
WID then requested the assistance of the OSCE Mission in Georgia to secure
international funding to support the participation of the Abkhaz NGO AIS and the
Georgian Coalition as collaborating disability NGOs within our 3-year international
training project. The OSCE Mission agreed and has successfully secured one year of
funding from the Belgian government. The head of the OSCE Mission, Mr. Roy Reeve,
has also requested permission from USAID to allow the participation of these two
Disability NGOs in the International Network Project.
His letter is reprinted below as an excellent example of understanding and support for the
inclusion of disability organizations in the resolution of civil conflicts.
OSCE
Organization for Security and Cooperation in Europe
Mission to Georgia
2 June 2004
Randal Thompson
U.S. Agency for International Development
Europe and Eurasia Bureau
Room 5.7.110
Washington D.C. 20523
Dear Ms Thompson,
I am writing in reference to the project "Civic Diplomacy through Disability Advocacy
Youth Teams" that the OSCE Mission to Georgia is pursuing in partnership with the
Association of Disabled Persons Perspektiva and the World Institute on Disability.
The OSCE Mission to Georgia is working to promote democratization, the observance of
human rights and the rule of law as essential for the long-term security of the country.
This is especially true when considering the two zones of conflict. Our approach is based
on the belief that any political solution to the Georgian-Abkhaz conflict needs to be
supported in advance by strengthening the ability of the two societies to interact with one
another in a meaningful way. To this end, we are focusing on promoting the ability of
actors on both sides of the conflict to effectively participate in decision making in their
communities through advocacy as a necessary step in developing their capacity to engage
in the conflict resolution process.
To date, many donor attempts to support cross-borderline relationships between Georgian
and Abkhaz civil actors have had limited success for several key reasons. First the
relationships across conflict lines were often stimulated artificially and were not based on
mutual need. Second, often participants were identified these on their willingness to
engage with the other side, even if they did not have sufficient support within their own
communities to make their interactions meaningful. Lastly, often the level of
development of civil society was not strong enough in itself to engage meaningfully in
confidence-building measures. The OSCE Mission has identified funding to support the
project "Civic Diplomacy through Disability Advocacy Youth Teams", to bring together
two disability organizations in Tbilisi and Sukhumi by helping them develop their own
disabled youth teams to conduct advocacy in their communities. The project meets all
three of these necessary criteria, while simultaneously demonstrating an effective
committee advocacy model, a key need in either society.
The partnership between the Georgian NGO Coalition of the Disabled and Veterans
based in Tbilisi (the Disability Coalition) and the Sukhumi- based disability NGO AIS
was established naturally, based on mutual need and interest. But organizations have
engaged successfully in disability advocacy efforts in their own communities and both
have a need to expand these efforts through mutual support and connection to the wider
disability community. Due to the nature of their movement, both groups have
experienced significantly less pressure from counterparts in their own societies, as many
of them became disabled through the conflict itself. Both organizations have the explicit
support of their relative authorities to engage in this collaboration.
The partnership between these two NGOs can be compared with the partnership
developed over the past 10 years between the U.S.-based World Institute on Disability
(WID) and the Russian Association of Disabled Persons Perspektiva, who have had an
extremely successful track record in developing and training disability youth advocacy
teams in the former Soviet Union through the support of the U.S. Agency for
International Development. The OSCE Mission welcomes their latest project, funded by
USAID, to support disabled youth teams in a network of mutual support in Russia,
Azerbaijan, Armenia and Uzbekistan. We believe this project would be an invaluable
support to our initiative in Georgia. We would like to formally request your support to
allow the young people with disabilities to develop their advocacy skills through our
cross- borderline project in Georgia to gain access to the Perspektiva-WID network
funded by your Agency. We hope that adding youth from Georgia, including Georgian
and Abkhaz representatives, will add to the success of both of our efforts.
Sincerely yours,
Roy Reeve
Head of Mission
Victims of Landmines Increase by 150% in Colombia
DISNNET Press
Instead of reducing the permanent risk situation of Colombians living with so many
landmines (also known as leg breakers) in their territory, there is an upward moving
curve of accidental explosions and hundreds of new victims of this type of warfare
devices, particularly in some geographical regions of the country.
A report that emerged during a seminar conducted in preparation for the participation of
Colombia in the next Summit on the Elimination of Landmines, indicates that the number
of victims has increased by 150%. In 2003 alone, 638 persons lost their lives in Colombia
due to landmines.
Official reports insist that there were about 100,000 landmines planted in Colombia, but
others indicate higher figures.
In Bogotá, the International Campaign to Ban Landmines (also known as ICBL),
organized a Seminar called: "Toward the Nairobi Summit and the Ban of Landmines in
America". The participants reviewed the evolution and present situation of landmines in
Colombia.
Colombia will ratify the elimination of landmines, as proposed by the Nairobi Summit.
These activities began in the year 2000, pursuant to the Ottawa Convention.
Day by day, more and more Colombians become victims of landmines. There were 261
victims in 2001, 530 in 2002, and 638 in 2003.
Figures for the number of victims during 2003, indicate that there were 159 civilians, 462
military, 3 non governmental combatants, and 14 persons of unknown affiliation. Of the
2,568 victims killed during the last 13 years, 338 were children.
The most afflicted regions are: Antioquia, Santander, Norte de Santander, Bolívar,
Arauca, Caquetá, Cesar, Cundinamarca, Meta, Putumayo, Cauca, Casanare, Valle,
Tolima, Huila, Guaviare, and Sucre.
Call for Papers: Travel & Disability in Review of
Disability Studies
Edited by Diane Driedger and Michelle Owen
Call for Papers for the scholarly forum "Travel and Disability."
Papers are sought in one of four categories:
 The history of inclusive travel (travel accommodating those with disabilities)
 The impact of travel on self-identity and disability culture(s)
 The representation of travelers with disabilities in the myth and practice of the travel
and hospitality industry
 The place of Universal Design in the sustainability of inclusive travel
For more discussion of these specific themes, visit
http://www.rollingrains.com/archives/000146.html#more
In addition, freestanding bibliographies from reviews of the literature will be accepted in
any language and the maximum breadth of language representation is sought.
The forum will appear in the Review of Disability Studies Spring 2005 issue. The format
is approximately 50 pages double-spaced. Article proposals are requested by August 15,
2004. Send them to Dr. Scott Rains at srains@oco.net.
The first round submission deadline for completed articles is November 15, 2004.
The language of publication is English. The editors are committed to working with new
authors and those unable to submit in English. Joint authorship is encouraged, when
appropriate, to insure a diversity of geographic representation in the volume.
Further information on the Review of Disability Studies is available at:
www.rds.hawaii.edu
Submission guidelines: www.rds.hawaii.edu/submissions/guidelines/default.htm
Updates will be posted on the Rolling Rains Report. Search under the keyword "RDS" or
the blog's category "Review of Disability Studies".
Contact:
Dr. Scott Rains
Resident Scholar
UC Santa Cruz, Oakes College, Center for Cultural Studies
srains@oco.net
The Imprint of Discrimination
By Luis Fernando Astorga Gatjens (lferag@racsa.co.cr), Nueva York
Enrique Sarfati, President for Human Rights of Disabled People's International, Latin
American Region, was detained during four hours at the Miami International Airport.
This happened because migration authorities did not have proper training and equipment
for finger printing persons with short or no hands.
The detention occurred last May 23, when the DPI delegate was traveling from Buenos
Aires to New York, to participate on the Third Meeting of the Ad Hoc Committee on the
United Nations Convention on the Rights of Persons with Disabilities.
The requirement of finger printing foreign passengers entering the United States was
adopted last January, as part of the new security measures of this country
The upper limbs of Sarfati are very small, with limited mobility and very little fine motor
activity. All of these elements constitute, for him, limitations with respect to his ability to
have fingerprints, requiring personal assistance.
He was not offered nor provided with personal assistance by the Immigration Authorities
of the airport. Since the finger prints were not obtained, he was taken a separate room and
left there for four hours until the Immigration Authorities decided what to do. Then they
decided not to collect his fingerprints and allowed him to continue his journey.
Nevertheless, this unnecessary delay, caused this Spanish speaking passenger to lose his
other flights to New York. Consequently, he was not able to participate in the first day of
sessions of the Ad Hoc Committee. By the way, the Immigration Officer did not speak
Spanish.
Mr. Sarfati, indicated to Disability World that he hopes this experience will never happen
again. Persons with disabilities should not be discriminated against under any
circumstances.
Finally, he told us about the possibility of filling a formal legal suit against the
government of the United States, because of the avoidable damages it caused.
European Union Requested to Direct 10% of its
International Cooperation Funds to Projects concerning
Persons with Disabilities in Ibero-America
By Solidaridad Digital / Information provided by Guillermo Fernández
Leire Pajin, Secretary for International Cooperation of the Government of Spain, assured
Solidaridad Digital that she would request that the European Union reserve 10% of its
international cooperation budget to disability related programs in Ibero-America.
This idea was originally proposed by the disability sector during the recent formation in
Bolivia of the Steering Committee for the Ibero-American Year of Persons with
Disabilities, 2004. Leire Pajín added: "We support this measure and recognize our
commitment toward those in greater need, as is often the case of women and persons with
disabilities who need special attention."
She also added: "On occasions, persons with disabilities are the most vulnerable,
therefore they are entitled to more specific and better coordinated integrated strategies."
CERMI Requests the Organization of American States
to Create a Committee Against the Discrimination of
Persons with Disabilities
By Solidaridad Digit@l, Madrid, April 23, 2004
The Spanish Committee of Representatives of Persons with Disabilities (CERMI) has
requested the Organization of American States (OAS) to "urgently" appoint the
Committee for the Elimination of All Forms of Discrimination Against Persons with
Disabilities.
The constitution of this Committee was established on the Inter-American Convention on
the Elimination of All Forms of Discrimination Against Persons with Disabilities, that
was approved by the General Assembly of the Organization of American States on June
of 1999.
This Inter-American Convention is the only disability specific instrument of international
law serving as reference for the International Convention on the Human Rights of
Persons with Disabilities, that is now being prepared by the United Nations Ad Hoc
Committee.
Luis Cayo, Executive Director of CERMI, wrote a letter to César Gaviria, Secretary
General of the Organization of American States, reminding him that the first meeting of
the Committee for the Elimination of All Forms of Discrimination Against Persons with
Disabilities had to be held before February 22, 2003, once the necessary number of
ratifications for the Inter-American Convention was completed.
The purpose of the purpose of this Committee for the Elimination of All Forms of
Discrimination Against Persons with Disabilities is to provide follow up on the
commitments undertaken by the Inter-American Convention. This Committee must also
review and provide criteria for studies and situations regarding persons with disabilities
presented by States.
The reports prepared by this Committee shall include information on measures adopted
by the member states and on any progress made in eliminating all forms of discrimination
against persons with disabilities. The reports will indicate any circumstances or
difficulties regarding the fulfillment of the obligations arising from this Convention.
For these reasons, Luis Cayo, reminds the Secretary General that this Committee must be
appointed and that its members need to be called together. At the same time, in his letter,
Mr. Luis Cayo affirmed: "the XIII Ibero-American Summit of Presidents and Heads of
Stated, declared 2004 as Ibero-American Year of Persons with Disabilities (Declaration
of Santa Cruz de la Sierra, Bolivia, November, 2003). The purpose of the year is to
emphasize the importance of measures to advance measures leading to normalization,
protection, and nondiscrimination regarding persons with disabilities. In Ibero-America,
there is much that needs to be done to ensure that the sector of persons with disabilities
enjoy full participation and have equal rights in society. Member states and their
governments are committed in achieving the proposed goals."
"The celebration of the Ibero-American Year of Persons with Disabilities is an opportune
occasion for establishing the Committee, as required by the Inter-American Convention.
It is one more way of supporting the Ibero-American Year and would be one of the best
contributions to strengthening this instrument of rights protection among the countries of
the American continent."
Leader of the Disability Movement Denounces Bolivian
Government's Indifference Toward the Ibero-American
Year of Persons with Disabilities
With information provided by COBOPDI
The National Committee of Persons with Disabilities, the Bolivian Ombudsman, and
other organizations in the field of disability were present during the inauguration of the
2004 Ibero-American Year of Persons with Disabilities.
The Bolivian Confederation of Persons with Disabilities (Confederación Boliviana de la
Persona con Discapacidad, COBOPDI), composed of organizations dedicated to
disability issues at the national level, expressed their frustration regarding the
indifference manifested by the government toward the activities for the Ibero-American
Year of Persons with Disabilities. This negative situation was denounced by Herminio
Yarari Silva, President of the Bolivian Confederation.
Several countries' presidents from the region have adhered to the activities of the IberoAmerican Year of Persons with Disabilities, while in Bolivia only the first step was just
undertaken to benefit this so vulnerable sector of our society. We should have done more
because, as a paradox, it was in Bolivia, in Santa Cruz de la Sierra, during the Summit of
Presidents and Heads of State, including our President Carlos Mesa, that 2004 was
declared the Ibero-American Year of Persons with Disabilities.
Eight months have gone by and the President of the Bolivian Confederation denounces
indifference by government authorities regarding this important celebration.
On March 28 to April 2, delegates of the Ibero-American Network of Persons with
Disabilities and their Families (Red Iberoamericana de Organizaciones de Personas con
Discapacidad y sus Familias) and the Ibero-American Inter-governmental Network for
Technical Cooperation (Red Intergubernamental Iberoamericana de Cooperación
Técnica, RIICOTEC) met in Santa Cruz de la Sierra to provide general guidelines for the
celebration of the Ibero-American Year of Persons with Disabilities.
The government has not paid due attention to this issue, and it has postponed the official
participation of Bolivia in the Ibero-American Year of Persons with Disabilities. That is
why, organizations of the civil society, like the Bolivian Confederation of Persons with
Disabilities, the Bolivian Ombudsman, and the Bolivian Chapter of Development and
Democracy, organized the inauguration of 2004 as the Ibero-American Year of Persons
with Disabilities.
Persons with disabilities need and demand that this year serves to strengthen the
institutions by which the government actions reach the population. International actions
may also be coordinated to benefit the sector of persons with disabilities.
The World Health Organization and the Pan-American Health Organization estimate that
ten percent of the population of Bolivia have a hearing, visual, physical or mental
disability. This would mean at least 800,000 persons with disabilities in the country. Yet,
on the other hand, there has not been an update to this figure in recent years. So, because
of deteriorating social conditions, it is likely that the actual number is really higher. This
calls for a more and effective governmental action.
Alliances for an Inclusive Society: World Bank
Promotes Inclusive Development in Latin American
Countries
By Henry Mejía, General Director of the National Federation of the Deaf of Colombia
(Federación Nacional de Sordos de Colombia)
One tangible contribution to the education and training of persons with disabilities is
found in the Alliances for an Inclusive Society project. The purpose of this effort is "to
promote collaboration among governments, the civil society and international
organizations for including disability related elements in the programs and strategies of
the United Nations Millennium Declaration." This project was presented during a
workshop held in Managua, Nicaragua, May 14 - 16, 2004.
This project, which will extend to several Latin American regions, mainly focuses on
general public policies (health, education, employment, housing, childhood and youth, as
well as other areas like infrastructure and social security) needing improvement in each
of our countries. Needs may be assessed and addressed both with local resources and the
support of international financial institutions.
During the Seminar held in Managua, Nicaragua, the World Bank officials said that:
"though recognizing the importance of disability groups, their support will be part of a
more general coverage to other traditionally excluded groups, needing development
strategies and programs."
As representative of Colombia, I supported such explanation and shared with the group
how in my country disability public policies are been developed. With this approach,
persons with disabilities have participated in the changes undertaken by several local
governments, including the Municipality of Bogotá, including the District Development
Plan "Bogotá Without Indifference 2004-2007" (Bogotá sin Indiferencia 2004-2007).
With respect to the field of disability, the objective is to provide education and training
resources to strengthen persons with disabilities and to aid in improving their living
conditions.
Participants and trainers
There were representatives from Argentina, Bolivia, Chile, Colombia, Costa Rica,
Dominican Republic, Ecuador, El Salvador, Guatemala, Nicaragua, Panama, Paraguay,
Peru, and Uruguay. This Seminar was made possible thanks to the financial contribution
from Japan to the World Bank, coordinated with Disabled People' International of Japan
and the Foundation for Latin America of the Spanish Organization of the Blind
(Fundación para América Latina de la Organización de Ciegos de España).
Mr. Ricardo Silveira represented the World Bank, Yolanda Muñoz González represented
the Inter-American Development Bank, Taisuke Miyamoto represented DPI-Japan, and
some members of the Canadian Association for Community Living also participated.
The purpose of these workshops was " to provide training so persons with disabilities
may become custodians or "sentries" regarding the developing policies and programs that
should be available to them and their families. By sentry we mean, persons who are
making sure that dispositions and measures needed for equal opportunities and inclusion
are planned for and undertaken locally and nationally."
The exposition team was made up by the following disability and inclusion specialists:
Rosangela Berman Bieler, Project Director, Ricardo Silveira, Mary Essex, Luis Fernando
Astorga, Sergio Meresman, and Mario Siede. These last persons served as consultants for
the Workshop and the project in general.
Inclusive development
During his presentation, "An Agenda for Development and Combating Poverty in Latin
America", Dr. Ricardo Silveira explained: "Inclusive Development means that we value
the contribution made by each person within a process we call development. It means that
there is no room for discrimination. It means, instead, that differences are recognized and
diversity becomes an advantage."
Regarding the World Bank commitment toward persons with disabilities, Dr. Silveira
recalled the following words of its President, James D. Wolfensohn: "The World Bank
will continue to foster inclusive development among its member countries and its
partners. Development is mainly inclusion: to bring into society those persons who have
never been part of it... Unless we achieve the inclusion of persons with disability within
the development efforts, it will be impossible to reduce world poverty by half before the
year 2015. The inclusion of children with disabilities in primary education is part of the
larger set of United Nations Goals for the Millennium, approved on September 2000, by
180 world leaders."
The process is developing
The idea is to expand this project in Latin America and Caribbean the countries. The
purpose of this activity in Nicaragua was to present a working methodology and tools for
promoting Inclusive Development. Those who were invited were chosen because of their
leadership and experience with the social movement of persons with disabilities.
Now, we should organize similar seminars, like the Managua Workshop, but with local
participants from the countries selected, and the adaptations suggested by them. The
purpose will be to promote the Inclusive Development, the concept and a general
methodology. Representatives of major organizations of persons with disabilities are the
first to be invited, together with the media, government official and people associated
with planning and executing policies and programs pertinent to disability, development,
and human rights, and agencies thereof.
A subsequent activity was held in July, 2004 in Brasilia, Brazil.
Clarification: Registration for the World Bank's 2004
International Disability Conference and Poster Board
Exposition
Please note, the correct email address for the world Bank's November 30 - December 1,
2004 Disability Conference, "Disability and Inclusive Development: Sharing, Learning,
and Building Alliances" is 2004disabilityday@worldbank.org. Our website address is
www.worldbank.org/disability.
We apologize for any confusion.
Thank you,
The Disability Team
World Bank
Disability Buzz
UN Convention meetings update
As we post this issue, New York City is bursting with politicians, protestors, reporters
and...disability rights specialists. At one end of town the Republican Party is making its
case for the re-election of President Bush and at the other, hundreds of government
officials and representatives of non-governmental organizations are forging ahead with
the draft of the UN Convention on the rights of disabled people. Our information is that
it's tougher times for the NGOs during this 4 th meeting of the UN Ad Hoc Committee on
the Convention since some governments successfully pressed to reduce the NGO role to
observer status in selected sessions.
Rumors of this tactic had been circulating all summer, so the NGOs were prepared and
are keeping close contact with like-minded souls on the governmental delegations. One
pundit said it's as if the negotiations started out on a multi-lane freeway with several
drafts soaring around and a truckload of game plans edging past each other; next the
caravan exited on to the roadway with two lanes, one in each direction; and finally we
have ended up on one of those single track roads found all over Scotland, with little
sandy areas to dive off the path in case of oncoming objects.
The NGOs are hosting information sessions at the UN during lunch breaks on a variety of
topics under discussion. On August 27, RI & DPI hosted a joint session on "What is
independent living?," featuring Marca Bristo , RI Vice President and Director, Access
Living of Chicago, speaking on the concept and its history; Gerard Quinn of Ireland,
international disability rights lawyer, addressing how independent living is reflected in
the Convention; and Venus Ilagan of the Philippines, Chair of Disabled People's
International, explaining how independent living relates to Community Based
Rehabilitation.
On August 30 the World Bank Statistical Office and Disability Advisor held a lunch
briefing for governmental delegations about disability data collection, the subject of
Article 6 in the current draft. The Disability Caucus, now comprised of more than 35
NGOs, has been meeting regularly.
Paralympics, September 17-28
A torch relay opens events for the Athens Paralympics on September 9, where
approximately 4000 athletes from 145 countries are expected. There will be 19 sports
competitions and details are available online: www.paralympic.org At the Olympics ,
the wheelchair track racing was an exhibition event, awarding medals as follows:
women's 800 meter race - Gold, Chantal Petitclerc of Canada, setting a record; Silver and
Bronze to Eliza Stankovitch and Louise Sauvage of Australia; men's 1500m - Gold,
Robert Figl of Germany; Silver, Saul Mendoza of Mexico; and Bronze, Rawat Tana of
Thailand.
Russian, 65, completes 3000 mile trip in his wheelchair
Not an Olympic event, but certainly one for the record books was the arduous trip from
Moscow to Madrid made by Vladimir Ksenchak, who traveled from June 11 to August
24 in his manual wheelchair. He dubbed his trip, "Russia-Europe Without Drugs," as a
campaign to discourage young people from using drugs. His route took him through
Russia, Belarus, Poland, Germany, the Netherlands, Luxembourg, France and Spain, and
people along the way provided food and lodging. (Associated Press, August 24)
This issue of Disability World has a strong emphasis on developing countries, with
many reporters focusing on concrete progress achieved in the areas of legislation,
governance, education and accessibility, and a few pointing out problem areas such as
rising disability rates due to landmines, conflicts and war, as well as difficulties in taking
services beyond pilot projects.
Highlights of this issue by region are:
• Africa: special report on CBR research; editorial on African conflicts and the
disability toll; progress report on the African Disability Decade, Global Deaf
connection focuses on sign language in Kenya, interviews with African disability
leaders in governmental office, inclusive education in Madagascar;
• Latin America: editorial on human rights and Latin America; interviews with Latin
American participants in UN Convention process, Latin America's Year of Disabled
Persons, human rights violations in Paraguay, landmines increase in Colombia,
progress reports from Argentina, Guatemala, Costa Rica and Ecuador;
• Europe: conference on inclusive education in Russia, report of training disabled
youths in conflict resolution, working towards disability rights in Georgia;
• Asia: overview of disability situation in Nepal, a blind man's life in Bangladesh, the
disability movement and accessibility reports from Afghanistan.
Next Issue
If you have news or articles you would like to see in the next issue of Disability World,
please make sure we receive them by September 15 as follows: in English, send Word
files to editor@disabilityworld.org ; in Spanish, send Word files to
espanol@disabilityworld.org
People in the News
Interviews with Latin American Leaders about the UN
Convention process and prospects
Luis Fernando Astorga of DisabilityWorld conducted a series of interviews over the last
few months with leaders from Costa Rica, Chile and Guatemala
Costa Rica: Jorge Ballestero-- "August will be dedicated to the negotiation process
for the texts presented by the delegations"
Costa Rica was one of the most active and remarkable of the participating delegations at
the Third Meeting of the Ad Hoc Committee of the United Nations for the International
Convention on the Human Rights of Persons with Disabilities. This was due in part to the
commitment expressed by Mr. Marco Vargas Pereira, the Deputy Minister of Foreign
Affairs, at a workshop organized in May 2003 by the Costa Rican Forum for the Defense
of the Human Rights of Persons with Disabilities (Foro por la Defensa de los Derechos
de las Personas con Discapacidad) and the Costa Rican Council of Rehabilitation,
together with the Ministry of Foreign Affairs. He stated: "Costa Rica will firmly support
the new treaty and, once approved, we will ratify it, and work on other countries to do so
too."
The Costa Rican delegation, representing a population of 4 million inhabitants, was very
diverse and large: four persons with disabilities, the President of the Council of
Rehabilitation and Special Education, a mother of a person with disability, and a
professional in the field of disability. This delegation had representatives from
government institutions and from the nongovernmental sector, including the Costa Rican
Forum for the Defense of Human Rights of Persons with Disabilities. With such
advantages, the Costa Rican delegation was able to play this active role, as was
recognized, among others, by the representatives of the nongovernmental organizations.
Mr. Jorge Ballestero Quesada, Consulting Minister of the Costa Rica Mission to the
United Nations, was the Head of the Delegation. He has a Doctorate degree in
Constitutional Law and his leadership was a key factor for this participation in New
York.
Disability World had a nice conversation with Mr. Ballestero Quesada:
DW: What is your opinion of this Third Meeting of the Ad Hoc Committee?
Jorge Ballestero: I am very satisfied and we made a great effort. The delegations have
presented all of their observations and have done their best to leave, in the first reading,
the best text they could with the elements they believe should be incorporated into this
important instrument we are negotiating.
DW: Costa Rica has had a very active role during this Meeting of the Ad Hoc
Committee. What is your opinion of this delegation?
Jorge Ballestero: We have worked as a team. Our work has been coordinated from the
Ministry of Foreign Affairs in San Jose, Costa Rica, the Costa Rican Council of
Rehabilitation, and the nongovernmental organizations. It is a great responsibility. The
participation of Costa Rica has been quantitatively and qualiatively recognized. Costa
Rica has contributed to the creation of the most relevant articles of the Convention text so
far. That is how seriously we have assumed this mission.
DW: Costa Rica had a large technical delegation, and included persons with disabilities
from nongovernmental organizations. What do you say about the work and consultation
provided?
Jorge Ballestero: We could not have done it otherwise. Part of the richness
demonstrated by Costa Rica was this numerous and diverse delegation. It really
represents many sectors of the Costa Rican society making their contributions. It was a
well-balanced delegation and each of these persons did make a difference. All worked
professionally and with great enthusiasm, representing the positions of their sectors and
promoting the larger cause of human rights for persons with disabilities.
DW: Would you all be working on the Fourth Meeting of the Ad Hoc Committee this
August?
Jorge Ballestero: That is a sine qua non condition for success in our mission. Work is
not finished today, June 4, 2004. The real work deals with the upcoming negotiations.
Costa Rica must maintain a firm position, not just for our country, but as a nation that
considers the situation of the whole world. That is the added value of the work we have
performed during these two weeks. We must take this time, from here to August, to
examine more closely our preoccupations and the rest of the world. Because the goal is to
approve an International Convention which will be really wide and comprehensive.
DW: What about Latin America? There are some alliances like the European Union or
the Africa group. How do you think Latin America and the Caribbean are working as a
region?
Jorge Ballestero: GRULAC, known as the Latin American and the Caribbean Group
has limited itself to receiving information from the Presidency. It sure would be
interesting to activate this group, and other regional groups and mechanisms. GRULAC
or the South American Group of Rio, could provide us with added support. Many could
be closer in their positions than we think and could become regional negotiation
mechanisms.
DW: Lastly, what do you think about this process?
Jorge Ballestero: Some people see that this glass is half full, others believe it is half
empty. I always see that the glass is half full. We have made a lot of progress. Some
wanted to do more, including us, yet there were many delegations presenting additional
texts, observations and important comments. All this calls for a second reading. August
will be the beginning of a stronger negotiation process. The difference is that in August,
we will not start from a draft prepared by the Working Group, instead we have to be
ready to discuss a document with all the additions, observations, and comments from the
delegations. We are dealing with materials and contributions from more than 130
countries. There will be a need to reach consensus in order to reach a final Convention to
be signed as a celebration of the United Nations Goals for the Millennium.
Chile: Maria Soledad Cisternas-- "I perceive a positive disposition toward the
International Convention"
María Soledad Cisternas was part of the official Chilean delegation to the Third Meeting
of the Ad Hoc Committee, New York, 24 May to June 4, 2004. The objective of this
meeting was to read and make observations to the draft prepared by the Working Group
last January.
María Soledad is a Chilean lawyer, who is working in academics and as part of the social
movement of persons with disabilities in her country. She is Director of a Program on
Disability Law at the University of Diego Portales and she is also a consultant for the
National Fund on Disability (Fondo Nacional de Discapacidad, FONADIS), where she
represents persons with disabilities.
She was appointed Technical Consultant and member of the Chilean Delegation to the
Ad Hoc Committee working on the International Convention, because of her expertise
and activism in human rights, particularly in the disability field.
Disability World was able to ask her about this Third Meeting here in New York, at the
headquarters of the United Nations:
DW: What is your view about the Convention process during these days?
María Soledad: With respect to the pace of other international conventions, this is taking
a reasonable time. Topics have been well analyzed, perhaps it is not a speedy process, but
those are the parameters of a human rights convention of this type.
DW: How do you value the role of nongovernmental organizations, particularly within
the framework of this Third Meeting of the Ad Hoc Committee?
María Soledad: Well, compared with similar United Nations Conventions, the new
achievement has been the greater participation of nongovernmental organizations of
persons with disabilities. Many have had to struggle with limitations yet at the end they
have moved a long way up to being recognized and heard by the official delegation.
Some of them are coordinating with the official sector. All of this was achieved by the
hard work of nongovernmental organizations.
DW: What is your opinion of the role of the Latin American countries in this process?
And what is the role they should play?
María Soledad: I believe they are playing an important role, with specific contributions.
Yet, the position of Latin American countries is not always as consistent as other
groupings of countries, we do not act in a coordinated manner as much as other groups
do, for example, the European Union or the African group. They move in ways we are
not used to. This should make us think more profoundly about how we are doing things.
There are some strategies that produce better results than others.
DW: What is your opinion regarding the support and counsel from the nongovernmental
organizations of Latin America? Are they doing a good job?
María Soledad: Well, there are differences, we cannot generalize. Costa Rica is
demonstrating the recognized importance of nongovernmental organizations working
hard and together and as part of the official delegation. This strengthens their proposals
and improves their contributions. Similar experiences may be found in the Mexican
delegation and, the Chilean delegation is trying to incorporate the unifying elements. I
mention these countries as examples of coordination. And in the cases of Costa Rica and
Mexico, they do exercise leadership.
DW: As this Third Meeting of the Ad Hoc Committee is closing and we are getting ready
for the Fourth Meeting next August, what are your perspectives on this process?
María Soledad: I believe that this is a large and varied process, having strong support,
not just here in the United Nations but from the participating governments. And there are
also differences in the importance given to certain topics on the part of the representatives
from non governmental organization and some official delegations. The most positive
contribution is that there is now a global positive interest in an International Convention.
Having said this, the sum of these contributions from these three sectors, points out, like a
tendency, that at the end, this Convention may become an instrument of
nondiscrimination rather than an instrument which includes disability rights in more
detail. There is also a second tendency gaining strength, that at the end, we will have a
more Comprehensive Human Rights International Convention.
Guatemala: Silvia Quan Chan-- "I believe that the participation of non government
organizations is vital."
Silvia Quan Chan is responsible for the Section for the Defense of Persons with
Disabilities of the Guatemala Secretariat for Human Rights (Procuraduría de Derechos
Humanos de Guatemala). She is a very active leader in the social movement of persons
with disabilities of her country.
She was appointed by the Guatemala Ministry of Foreign Affairs as Technical Advisor
and in that capacity she accompanied the official delegation of Guatemala to the Third
Meeting of the Ad Hoc Committee for the International Convention on the Rights of
Persons with Disabilities (New York, May 24 to June 4, 2004)
DW: What is your role in the delegation of your country at this Third Meeting of the Ad
Hoc Committee?
Silvia: I have been involved in the process of this convention for more than a year.
Because of my participation and the contributions of other representatives of other
organizations in Guatemala, we have developed a closer relationship with the Ministry of
Foreign Affairs. This allowed us to discuss with them the draft for the convention. On
behalf of the National Council for the Attention of Persons with Disabilities (Consejo
Nacional de Atención a Personas con Discapacidad, CIONADI), we shared with the
Ministry our position regarding the Convention and the importance of playing an active
role at the Third Meeting of the Ad Hoc Committee. The Ministry of Foreign Affairs and
the Mission of Guatemala to the United Nations expressed their willingness and interest
in having direct advice on disability issues. In this context, I was appointed in the
capacity of Adviser to the Delegation.
DW: What type of financial and other support have you received from the Ministry of
Foreign Affairs?
Silvia: Well, the Ministry has provided me with full political support. Unfortunately, no
financial support. From the beginning, the Ministry indicated that there was no money for
my trip to New York, and that the Guatemalan Mission to the United Nations would not
help me financially. So we used the strong communication we had developed with the
Office of the United Nations High Commissioner on Human Rights. They helped me and
also provided me with a Personal Assistant so I could go to the meeting.
DW: What is your opinion of the work during these days and how do you perceive this
Convention process?
Silvia: I believe it has been a difficult negotiation. There are very divergent positions on
topics which are very important for Guatemala and the Latin American region, such as
the topics of international cooperation and what is the best structure for the proposed
International Convention. At the end, because the European Union presented a more open
position, the part on international cooperation was finally advanced. Perhaps the negative
aspects will be resolved. Regarding the structure of the Convention, there still are many
divergent positions. Here in Latin America we have to work very hard toward a unified
position, so that the convention really becomes a Convention on Human Rights.
DW: What is your assessment of the work performed by the nongovernmental
organizations in the general process and specifically during this Third Meeting of the Ad
Hoc Committee?
Silvia: As our slogan affirms, "Nothing about us without us" or "Everything about us
with us", the participation of nongovernmental organizations is essential. This process
has also been a historical landmark for the United Nations too, it is the first time that so
many sectors of the civil society have come together with a common purpose of
supporting an international instrument, like this Convention. The increased participation
process must be continued. Nongovernmental organizations should participate in the
second and in the third readings of this document. This is important because these private
organizations usually defend and propose more progressive and immediate changes, as
compared to government positions which usually tend to avoid commitments or direct
actions or the sharing of power. In fact, many of the changes in our region are the result
of the social struggle of persons with disabilities. Here in this meeting there are many
persons with disabilities, from the civil society, who came as part of the official
delegations of their countries.
DW: What do you think about the role of Latin America in this process toward a new
human rights treaty? Did Latin America play a unified role, as a unity of countries?
Silvia: I will be very careful in answering that. My impression is no. We have not
reached a high enough political level to act as a block. There has been a very good
participation of some Latin American country delegations, like Costa Rica, Chile, and
Mexico, but not as a coordinated block with shared positions and objectives. There have
even been some discrepancies among the Latin American delegations. There is still time
to work some more on this. If we really try, from here to August we can develop a unified
and stronger position. This is important in order to better negotiate with the more
consolidated blocs of the European Union and the African group, who have more
effectively advanced their proposals within the Ad Hoc Committee.
DW: How important is the support and consulting provided by the nongovernmental
organizations of Latin America for the work of the missions at the United Nations toward
the International Convention?
Silvia: The contribution of nongovernmental organizations has become fundamental for
the work of the missions here in the United Nations. At a national level, these private
groups provide political input for the Ministries of Foreign Affairs and these
nongovernmental organizations have many types of resources and even motivation for
international action, here in the Ad Hoc Committee.
DW: Lastly, what are your opinions regarding the next stage of the process at the Fourth
Meeting of the Ad Hoc Committee in August?
Silvia: I will speak about my personal perspectives, as part of the delegation of
Guatemala and as part of the Committee, in general. I think that is has been a learning
process for Guatemala and I somehow regret that we are so far behind with respect to
other more active delegations. My personal participation began last year and this is the
second time I came to a meeting of the Ad Hoc Committee. I believe we can improve and
advance in our work.
Now, regarding the next part of the Convention process, if we do a better job, we could
complete the third reading of the document presented by the Working Group, perhaps by
the beginning of year 2005. If a Fifth Meeting is planned for the Ad Hoc Committee, I do
not think that the two remaining readings would be completed in the Fourth Meeting.
Remember that there are some difficult topics that have not been addressed yet during the
first reading, like the Preamble, the structure of the Convention. I believe that once this
remaining work is done during the Fourth Meeting, we will be able to move more readily.
Here we must place our complete trust on the ability of the Ad Hoc Committee at
reaching conclusions and unifying criteria. If all this is done and with good continued
negotiations among all sectors, we will have the International Convention in 2005.
Australian Architect, New RI President Outlines
Program
Closing address to RI World Congress in Oslo on 24 June, 2004 by Michael Fox, RI
President
Thank you Minister, and may I thank the RI membership
and Oslo Assembly for the great honour of my election as
RI President 2004 to 2008.
I look forward to meeting and visiting RI members and
friends around the world, to assist in identifying and
achieving our international and regional RI goals.
During the past week here in Lillestrom we have held our
RI Executive Committee and Assembly meetings - and the
clear message from our RI membership is the need for
change.
This World Congress has brought together people from all
over the world, to a major international forum for
exchange of ideas over a wide range of important and relevant topics.
On behalf of RI, I sincerely thank our Norwegian hosts and Organising Committee for
the excellent arrangements and content during our meetings and deliberations.
In particular I thank my predecessor Lex Frieden for his guidance and leadership as RI
President over the past four years. Thank you also to the retiring and new RI Executive
Committee - I look forward to working together over the next four years to identify and
implement our RI global strategy.
The World Congress Plenary Sessions and Workshops have provided clear views on our
changing world, with exchange of ideas and opportunities. During the various Interest
Group discussions, an overriding theme has been the need to identify positive strategies
and programs, to solve problems and create real empowerment opportunities for people
with a disability.
As you may be aware my background as an architect and advocate extends over the past
thirty five years. This began during the 1960s when I met Lionel Watts, an accountant,
and a triplegic resulting from polio. Lionel had a vision for equity and empowerment at a
time when the prevailing view worldwide was based on the welfare / medical model.
Lionel established an organisation called the House With No Steps in Sydney, and our
task together was to design and build accessible facilities at a time when there was little
or no awareness or understanding of access issues.
From my involvement with Lionel Watts I was asked to convene a committee to develop
access standards in Australia in the early 1970s. We published the first comprehensive
Australian Standard on access in 1975 and this Standard AS1428 evolved and was
incorporated into building legislation in Australia in 1981 - The International Year of
Disabled Persons (IYDP).
Since that time I have continued my involvement in access and equity as an architect and
advocate working closely with government, relevant organisations and people with a
disability.
I am pleased that Shirley White and Janet Kahler from the House With No Steps
Corporate Board, and representatives of RI Australia, are present at this RI World
Congress.
Challenges
The challenges have been clearly articulated in the many excellent presentations during
this World Congress.
Venus Ilagan, DPI President, discussed the importance of including 'disability in
development thinking on economic grounds'.
Judy Heumann, World Bank Disability and Development Advisor, outlined programs to
integrate and involve people with disabilities across all World Bank programs and
activities.
Florence Sekabira from Uganda provided an excellent model for an 'African Renaissance'
to promote and empower participation of people with disabilities in the political world of
Uganda.
Discussions at the ICTA Seminar ranged from - lack of awareness of access and equity in
less developed countries and the need for education programs at all levels - to the
problem of ineffective implementation of accessible buildings in more developed
countries.
Opportunities
The opportunities are immense.
We have a global mandate to assist and empower over 600 million people with
disabilities. Access and equity benefit everyone - and this further expands our mandate.
Our collective role is to create effective partnerships between people with disabilities,
advocates, professionals, non-government organisations and government - to identify key
issues and find cost effective and appropriate solutions.
Our RI network is well placed to contribute to these important global challenges and
opportunities.
For the benefit of participants at this World Congress, I will briefly outline the structure
of RI together with ways that we can work together to achieve our goals.
RI was established in 1922 and major RI activities and programs during the past 80 years
have included the first Bill of Rights in 1931, the International Symbol of Access and the
creation of a global network of organisations and people involved in access and equity.
Today RI is closely involved in many major international activities including IDA - the
International Disability Alliance and the UN Convention on the Rights of People with
Disabilities. The New York office of RI is well placed to participate in this important
IDA and UN liaison.
RI has moved from a welfare / medical model to a rights based and more mainstream
organisation. Accordingly we will be promoting RI as an organisation concerned with
Rights and Inclusion.
RI in the new millennium can be a bridge builder, a networking organisation, a leader in
access and a strong partner and advocate of the UN Convention.
RI Strategy
During our RI Executive Committee and Assembly meetings we discussed a number of
key goals, as the basis for our RI strategy during the next four years. These goals relate to
Focus, Networking, Funding, Membership, the UN Convention and Process.
Focus - In consultation with our RI membership, we plan to identify and implement
achievable priorities. These priorities will include emphasis on the rights and inclusion of
people with a disability, and the exchange of information and ideas between more and
less developed countries.
Networking - We will strengthen existing links with important international
organisations, including DPI, UN, WHO, ILO and the World Bank.
Funding - Our aim will be to identify funding opportunities from both mainstream and
other sources, to promote and implement our goals.
Membership - We need to identify and promote the knowledge base of our RI
membership. RI human resources should be clearly identified and can be used more
effectively in all of our programs.
UN Convention - In conjunction with IDA, RI has an important role during resolution
and implementation of the Convention.
Process - We will review feedback from meetings such as this World Congress and from
our membership, to ensure that future RI activities and meetings provide an appropriate
forum to respond to identified needs and priorities.
I look forward to our next four years together and thank you, and our Norwegian hosts,
for this opportunity.
Global Deaf Connection: Interview with Kevin Long,
Social Entepreneur
Interview by Ilene Zeitzer of Disability Policy Solutions (ilenezdc@yahoo.com)
Q. Disability World was very impressed that all three 2004 Hearne Award winners are
working in international disability efforts and asked me to interview you. One of the
things they want to know is why you created your own organization, why you felt that
you couldn't work through existing organizations?
A. Ok, well I would have loved to work through an existing organization, but there's no
one doing what we do in the world, that is, a whole approach to sustainable deaf
education.
Q. Tell us what it is that your organization actually does?
A. It's called Global Deaf Connection and we bring sustainable deaf education to
countries around the world.
Q. And how did you come to the conclusion that there wasn't anyone doing this kind of
work around the world? Did you travel, or were you getting letters? Tell us about that.
A. In 1996, I went to teach at a school for the deaf in Kenya. I asked a girl there, "What
are you going to do when you grow up?" and she looked at me with a puzzled face and
said, "I'm deaf." And I was shocked. And then she said, "Does America have deaf
people?" and I realized that not only does she think that she can't do anything but she
doesn't even know about the success of the international deaf community in developing
countries. That was the start of Global Deaf Connection.
Q. That was the seed?
A. That was the seed. And here's kind of the scope of the international deaf community.
There are great organizations out there, for example, the World Federation of the Deaf, of
which we are members. Their skill set is organizing international deaf conventions every
four years. There are these huge conventions that deaf people from all over the world go
to and network and the conventions are information-sharing sources. In addition, each
country has a National Association of the Deaf, just like the United States has a National
Association of the Deaf, of which we are also a member.
The thing about the deaf associations in each country though, is that they have an
unbelievable amount of responsibility and in the developing countries, they have very
limited resources to carry them out. I'm talking about sign language development,
education, women's rights, court advocacy for interpreting, you name any issue that
affects the deaf community, the associations are responsible for it. So, there are these
great organizations out there, and these organizations are the key to the future for the deaf
community. What Global Deaf Connection provides is a niche-focused support by
empowering through education, which is only going to strengthen these organizations.
Q. Let's go back a little bit. What brought you to Kenya in the first place? What was the
initial program or organization?
Visual learning & deaf culture
A. I come from a business background and never thought I would be doing what I'm
doing today. I was running a small business and also, with my dyslexia, had an extremely
hard time in school, hated school as a kid. I took a sign language class and loved it. The
visual learning was something, it was the first time I liked school. So for me, it went from
the first time of liking school to liking this language. Then I started to have a lot of deaf
friends and started to fall in love with the deaf culture. So for me it went from a language
thing, to understanding a whole culture. Then I went to Kenya and met that girl, and met
those kids.
I'll paint you a picture. I show up at this school with 125 deaf kids, all the teachers are
hearing, none of them can really sign, they write on a chalkboard and point. The deaf kids
sit in classrooms all day. They don't understand what the teacher is talking about and they
basically fail their way through the system. And so what really brought this whole issue
full circle for me was the human rights issue -- those kids are not getting accessibility to
education. Out of the 41 schools for the deaf in Kenya, only three of them are high
schools because most of the kids basically fail their way through eighth grade and then go
back to the family farm with parents and family that can't sign. They're isolated, they're
alone. It's not an okay existence.
Work-vacation model
And for me, the answer is so simple. We need to focus efforts towards 1) mentoring and
empowering deaf students so that they know they can do whatever they want to do, 2)
creating a link between a secondary high school and a college education so that there is at
least one path. So that way, a deaf first grader has the opportunity to go all the way
through teachers' training college. We do the first step, the mentoring, by sending deaf
education professionals overseas who volunteer their time. We use a work vacation
model, so these people are deaf education professionals from all over the world who are
paying us to go volunteer their time.
We set a U.S. tax deductible program fee and this brings an income to run our programs.
Then these incredible people, with 10-15 years of experience in interpreting and deaf
education, go over and mentor these students, mentor the hearing teachers, and the
students are inspired. Then we pay for deaf graduates to go to a regular hearing teachers'
training college. We pay for fulltime sign language interpreters of their own native sign
language, we don't bring ASL (American Sign Language) interpreters over there. We pay
for local interpreters to work full time at a teachers' training college, then we pay for deaf
people to go to a teachers' training college.
Deaf schools get deaf instructors
We started this program five years ago. It's the first time in all of Africa that there had
been full time sign language interpreters at a teachers' training college. We have been
graduating a group every year and now we have a group of 20 deaf Kenyans who are
starting teachers' training college in August. So almost half the deaf schools now in
Kenya have a deaf teacher, there are 41 schools for the deaf (in Kenya). Almost half of
them have a deaf teacher and two years from now every deaf school is going to have a
deaf teacher. Then the last step of the cycle's success is that the deaf teacher is in the
mentor support program. So, now you have this school that has 125 deaf kids. For the
first time ever, a deaf Kenyan is hired by the government to be a teacher there. So that's
125 kids who, for the first time in their lives, see a successful deaf adult. For the first time
in their lives, they can raise their hand and sign a question. This deaf adult is mentored by
a GDC global ambassador with the result that this deaf Kenyan teacher becomes the
leader of that school in teaching sign language to the hearing teachers.
Q. What brought you to Kenya in the first place?
A. Someone did a presentation in one of my sign language classes on the schools for the
deaf in Kenya and I thought wow, you know, I'd like to go there and volunteer my time
some day. And that was my connection. So she (my classmate) wrote a letter to the
school, they wrote a letter back welcoming me to volunteer, and they gave me a free
place to stay. I was 20 years old, I jumped on an airplane, and I had no international
experience really to speak of. The school was like five hours outside the city of Nairobi,
it wasn't on a map. It took me like two days to find it. I spent the most amazing six
months of my life at this deaf school, with no electricity, no running water, and these
amazing deaf kids. So that's how it all started.
Cultural bases of sign languages
Q. Let's go back to the issue of sign language. There is not a universal sign language.
Most countries have their own sign language, and some don't have any. Is there a
recognized sign language in Kenya?
A. Just like developing countries going through the same struggles in all different areas,
including the rights of people with disabilities, Kenya is fighting for the right for sign
language to be recognized. I mean it wasn't really recognized in the United States 20
years ago and now it's taught in colleges for college credit, taught in first grade classes.
And so, every country has their own sign language, it's all culturally based. I get this
question every time I do a presentation, they say, "Well, why isn't it the same?" And I
always asked them, "Well, why doesn't everybody speak English?" And they say, "Well,
it's different." And I say, "Why is it different, there's no difference?" An example I
always give is the sign for coffee (in ASL) looks like the old grinders, grinding with two
fists on top of each other, except you're going counter clockwise with your right hand,
which looks an old coffee grinder grinding the beans. In Kenya, the sign for coffee is
with your index finger and your middle finger picking a leaf and putting it over your
back, which is picking the coffee and putting it in the basket behind you -- because that's
cultural for Kenya. Now, you do a coffee grinder sign in Kenya, a lot of Kenyans have
never even seen a coffee grinder. You know, a lot of Kenyans don't drink coffee. And if
you do a picking sign in America, that won't make any sense because most Americans
don't even know where coffee comes from. So it's all culturally based.
Kenya's sign language research project
Q. In Kenya, have they evolved a national, agreed upon, sort of universal sign language?
A. Well, you know, sign language is always a work in progress, continually getting more
and more developed, but Kenya is very far ahead. They have a project that's funded
through Sweden called Kenya's Sign Language Research Project (KSLRP). They have
developed a Kenya Sign Language dictionary, they have Kenya Sign Language classes at
the university, and now interpreting is becoming more popular in Kenya. A lot of it has to
do with Global Deaf Connection as we hire fulltime sign language interpreters at
teachers' training colleges to increase that demand.
Q. Is Kenya the only country that you work with at the moment?
A. We're in Jamaica and the Democratic Republic of the Congo.
Q. Each of these countries would have their own sign language or sign languages?
A. Right, I mean there are different dialects and variations in parts of the country, but
that's the same as in the United States.
Sources of Funding
Q. You mentioned volunteers who pay their own way, but are there other sources of
funding? For example, you're training people, so where does the funding from that come
from, do you have grants?
A. First of all, our trips are income generating. So that brings in money. I mean, we send
groups to Kenya, Jamaica, and the Congo and then people pay for the program fee plus
they pay their own airfare. We also get a lot of pro bono time, we have mobilized
professional resources pro bono to an amazing level. Since we started GDC, we've been
in a free office space at a deaf church even though we're non-religious. Our board of
directors is required to give a minimum eight hours a month plus a committee meeting.
Our board is made up of 51% members of the deaf community, lawyers, business people,
and so we have four running committees that do an amazing amount of work. We have
Hill and Knowlton, the PR firm, that's doing all of our publicity, we have Clifford and
Chance doing our free lawyers pro bono work, I could go on and on. We really have
mobilized our volunteers in terms of pro bono work.
Q. But how do you pay staff, for example?
A. We're also funded through grants, we have a few local grants and we're starting to get
federal funding. USAID funded us $250,000 for a project in the Congo. We're doing
some amazing things, we're putting computers in a deaf school in the Congo with
wireless Internet, we're connecting deaf Congolese with deaf Americans all over the
world. We also do two special events in Minneapolis per year, we have some income
generating programs and we sell cars. We are starting to get more on the incomegenerating side. I'm an Ashoka Fellow. Ashoka sponsors social entrepreneurs that have a
new idea for social change, basically people using business concepts in the social sector. I
was elected with 13 other people from the U.S. and Canada two years ago and it's a
fulltime fellowship for three years for social entrepreneurs to get their idea off the
ground.
Q. And your idea is?
A. Global Deaf Connection, and the Cycle of Success.
Q. And do they look for something unique about your idea?
A. It has to be a new idea. There are four criteria, the Web site is www.ashoka.org and
our Web site is www.deafconnection.org.
Sustainable deaf education - the concept
Q. As far as the Ashoka Fellowship is concerned, what was the unique idea of the Global
Deaf Connection?
A. Well, there are three organizations that bring deaf education professionals or sign
language interpreters overseas to do mentoring. So, they go to schools for about two
weeks and then they come home. It has been happening for some time now that deaf
people have gone to college and had interpreters. But no one has taken a full approach to
sustainable deaf education for an entire country in a developing country like Global Deaf
Connection has. What we do is to take all these concepts and put them together. Our goal
is to be in and out in five years.
When we are invited into a country, we work with the deaf community, get local buy-in,
use their sign language, and then exit in five years. So the process is: we send over deaf
education professionals; we pay for deaf people to go to the teachers' training college;
and when every deaf school has a deaf teacher, we pay to send a deaf education
professional overseas to mentor these new deaf teachers to be the leaders of their schools.
Using the example of Kenya, once there are 41 deaf in Kenya, all the teachers are
mentored and have become leaders of their schools, they are all hired by their own
governments because we do advocacy work, then we can leave the country. So, we
expect to be out of Kenya in two years.
Q. And then you'll go somewhere else?
A. Yes, so now we're in Kenya, Congo, and Jamaica. Then what happens in two years
from now is the money we make from our income-generating programs and our grants
we'll use towards sponsoring a group of 40 deaf Jamaicans into college. So, basically it
takes us about five years to create sustainable deaf education for an entire country. Once
we get fully funded up to capacity, which is going to be basically having four full time
staff, we are going to be able to handle five to 10 countries at a time. And what that
would mean, is that every year, after a five cycle, ever year we'll be finishing five to 10
countries, so in our life time there can be sustainable deaf education for the world. Which
is great, to achieve a vision. Because most visions in nonprofit organizations are these
huge visions that will never be accomplished. So it's really fun to have a giant vision that
can actually happen in one lifetime.
Obstacles to the dream
Q. So what are your obstacles, what were your obstacles when you started and what do
you see as your obstacles now?
A. The big obstacle when we started was just proving this. I mean no one wanted to put
money toward sponsoring deaf Kenyans through college because no one had set a
precedent of this being a successful program. So the big thing was proving that this
model was successful -- sponsoring deaf people through college, sending deaf people
overseas, showing that this was having a huge impact despite really limited resources.
The cost for a Kenyan to get an entire college degree, room and board, books, full time
interpreters, everything and our costs to administer and send wires, hire staff, etc.
amounts to $2,500, and life time mentoring. The Kenyan government is going to hire
these graduates and they're going to mentor over a 100 kids, year after year. So, we've
proven the model is successful and our deaf Kenyans are doing great in college, they're
surpassing the hearing people because they're studying all the time. So that was the first
big obstacle. Now we're in three different countries, we have four part-time staff, I'm the
only full-time person, and the biggest obstacle for us is to make that jump. It's really a
tough jump to go from a start up nonprofit to a sustainable nonprofit.
Q. You said you're members of both the World Federation of the Deaf and the National
Association for the Deaf, what is their reaction? Are they out there beating the drums for
you?
A. Well, the thing is everyone's in the same game. Everyone has limited resources, and
everyone's scrambling to do what they can do in their own area. They accepted us as
members. I just had a meeting with the National Association of the Deaf and they love
what we're doing. They're putting us in their news and getting the word out, but besides
that these organizations are still trying to stay together.
Underserved populations
Q. Are they doing referrals, do they get a lot of questions from deaf organizations around
the world and then do they refer them to you?
A. We get referrals from all over, and it's even hard to tell where they come from. There
are 15 countries who have requested us, formal requests, to have us start the cycle of
success, work with their deaf community, and so forth, but we just had to tell everybody
to wait, that's a really hard part of this job. I just went through Central America, and the
need is unbelievable. There's huge populations of deaf people that are totally
underserved. Just an example in Central American countries, you have about half a
million deaf people in many of the countries, but only 300 deaf people are in school. I
mean, this is an incredible human rights issue for this population. With very little
resources combined with empowering support, these people could be an incredible
resource to their countries.
Memories of Tanis Doe, Renaissance Woman
By Kate Seelman
The International Disability Movement lost a gifted leader on August 4, 2004. Tanis Doe
passed away at her home in Victoria, British Columbia, Canada from a pulmonary
embolism. She was 37 years old. I will share some of my memories about Tanis and
excerpt from her articles and those of her colleagues and friends.
Tanis was widely known to love sunflowers and Snapple-- a beverage perhaps not as well
known to the rest of us. Her tastes suggest her wry sense of humor. Tanis and I often met
at Society for Disability Studies (SDS) meetings. Usually she brought me a gift,
sometime a copy of her most recent book or article, sometimes a good story. At one
meeting, she gave me a gift of ear cuffs! This year at the June SDS meeting in St. Louis,
Missouri in the U.S., she handed me the books she had edited on community research in
assistive technology (http://www.atnet.org). Her publications reflect her skills as a
sociologist who is comfortable with both qualitative and quantitative research. When I
was Director of the National Institute on Disability and Rehabilitation (NIDRR), Tanis
Doe introduced herself as a researcher capable of doing participatory action research
(PAR). PAR recognizes that the process of change is researchable and those affected by
the research should be involved in very step of the research process. In 1998, she and
Sally Kimpson undertook a study of the Canadian women's experience with the Canadian
Pension Plan, Canada's disability benefits program. The heart of the report is the section
on the complex reality of being women living with disability and their testimony about
enforced uselessness and a consensus of fear around policies that curtail work.
Tanis was a Fullbright Scholar. She was active in the disability, queer and feminist
movements internationally. She was a Professor of sociology and disability studies at the
University of Victoria, and in recent years also taught at Royal Roads College, Ryerson
University and the University of Washington. According to the Ragged Edge, Tanis
accepted a research position at the World Institute on Disability in California in 1994,
having "defected from the land of socialized medicine (Canada) to the land of the brave
(no insurance)."
In Western terms, Tanis might simply be described as a renaissance woman. But she was
not simple and did not fit any historic profile, Tanis was an evolving person. She was a
radical who strived to be open-minded. She was an advocate social scientist who loved to
dance. She had multiple identities: deaf and a wheelchair user along with other
disabilities, international, multicultural and Canadian and mother, feminist and lesbian.
While she may have maintained her position as pro choice, Tanis was a fierce critic of
pre-screening for fetal disability and subsequent abortion.
So Tanis, you made your mark although you had so little time. For those of us who have
been in the Movement for a long time, you gave us hope as a younger leader. We will
"move on" but with sadness. For readers who have access to the Internet, you may want
to ask www.google.com to tell you more about Dr. Tanis Doe. For readers who want to
share their thoughts and feelings, about Tanis Doe, go to her memorial webpage and
guestbook at http://dawn.thot.net/tanis. A memorial chat will take place, probably in
September.
U.S. Disability Rights Leader Awarded Honorary
Doctorate from Ireland
Lex Frieden was awarded an honorary doctorate in
laws (LL.D.) by the National University of Ireland
(NUI) at a conferring ceremony in Galway, Ireland on
June 25, 2004. Degrees were also conferred upon
Professors Roy Foster, Philippe Kirsch and John
Mannion.
NUI Galway is renowned for its research centers of
excellence in the areas of human rights and humanities.
The honorees were carefully considered and selected
for conferring because of their significant contributions to society in the area of human
rights or through their scholarly contributions to the area of humanities.
In recognizing the accomplishments and contributions that each individual has made to
society during their lifetime, The President of NUI Galway, Dr Iognáid Ó Muircheartaigh
said:
"Each of these individuals in their own way, has made a significant contribution to
society and to altering and enhancing the lives of many. This has been achieved through
their work, views, beliefs and unfaltering commitment which has enabled them to achieve
personal objectives which have been for the benefit of others. NUI Galway is a university
which has long supported ideals which promote research excellence, both in the areas of
Human Rights and Historical studies and for this reason, we are proud today to honor the
work of all of these individuals."
Lex Frieden, Chairperson of the US National Council on Disability and senior vicepresident at The Institute for Rehabilitation and Research (TIRR) in Houston, Texas, was
instrumental in drafting the 1990 Americans with Disabilities Act and he is now at the
forefront of the new United Nations treaty on the rights of persons with disabilities. Roy
Foster is Carroll Professor of Irish history at Oxford University and has a highly
distinguished record in historical scholarship.
Judge Philippe Kirsch is the first president of the International Criminal Court.
Established in 2003, the creation of the International Criminal Court is perhaps the most
important new international organization to be established since the United Nations. John
Mannion of St. John's Memorial University, Newfoundland, has made it his life's work to
document and study all aspects of the Irish migration to Newfoundland.
Hugh Gallagher, author & international advocate,
1933-2004
By Barbara Duncan (bjdnycla@aol.com)
The Washington Post and numerous disability news outlets ran glowing obituaries last
month about Hugh Gallagher, who died on July 13, but few mentioned his international
activities. A polio survivor, Hugh was perhaps best known for his early work on
architectural barriers legislation in the late 1960s and subsequent books and articles
focusing on the role of polio in the making of the mettle of a U.S. President, Franklin
Delano Roosevelt. Former Senate majority leader Bob Dole wrote that, "Hugh's most
outstanding contribution to the quality of life of people with disabilities was to
successfully place disability on the agenda of the Congress for the first time."
On the international level, he also made a significant impact. In the late 1980s, working
as a visiting adjunct fellow of the Center for the Advanced Study of Ethics at
Georgetown University, Gallagher became interested in the so-called euthanasia program
of Nazi Germany, resulting in the deaths of hundreds of thousands of disabled children
and adults. He was given a fellowship through the IDEAS project of the World Institute
on Disability and RI to continue his exploration on site in Germany, where he met with
researchers and disability rights activists. The result was an influential book, By Trust
Betrayed: Patients, Physicians and the License to Kill in the Third Reich, published in
1990 and in revised edition in 1995. He then worked closely with the Holocaust Museum
in Washington D.C. to ensure that their exhibits and conferences included disabled
victims as an important aspect of its educational outreach.
In 2001 and 2002 Hugh worked again with RI & WID to train disabled Russians in the
fine points of advocacy work, and giving a keynote speech in October 2002 to Moscow's
first disability film festival and workshops on how to improve mass communications on
disability issues. He told us in Russia that one of his proudest achievements was that the
U.S. Embassy in Moscow had agreed to underwrite his trip as an accomplished American
author. The Embassy made good use of him, but for every two-hour lecture he gave, he
spent at least three hours awaiting accessible transport. True to form, and form was
important to Hugh, he never complained, reminding his handlers that for most of his life,
accessible transport had been but a dream.
Independent Living
The Disability Movement and Community in
Afghanistan
By Majid Turmusani
Disabled people's organizations
Disabled people know best about their priorities and their organizations have a strategic
advantage in advocating their rights and influencing public decisions concerning their
issues (Kasnitz, 2001). Supporting the development of disabled people's organizations is
in line with the universal rights of disabled people for self-representation promoted by the
Standard Rules (UN, 1994) as well as the BMF (2003) and the new draft disability
convention (UN, 2003).
It is not surprising to note the weak structure of the disabled community in Afghanistan
given the communist legacy. The concept of participation and self- representation is not a
common practice in Afghanistan. Participation of minority and marginalized groups in
government planning has not often been recognized until recently. However, over the
past few years much progress has been made to promote democratic governance and
increase participation, notably since the UN set up its office in late 2001. An example of
this progress is the Loya Jerga, a national assembly that successfully developed the
National Constitution with participation from all sections of society.
Moreover, there is a growing awareness among the general public in Afghanistan of the
need to organize themselves through certain groups such as NGOs. This is due to the
belief that civil society [1] represented by NGOs is more efficient in serving their
interests and providing for their needs in their local communities. The fact that there was
no active and legitimate government for sometime in Afghanistan has also given
credibility to the work of NGOs, notably the international NGOs. Currently, civil society
plays a crucial role in the development of modern Afghanistan but with international
NGOs leading the process. The participation of Afghan civil society in the development
process has remained limited until now as there is little clarity in government policy to
promote the role of this sector and support its cause.
The need for active and independent NGOs has also been identified by disabled people in
Afghanistan. They have identified their needs for Disabled People's Organizations that
can protect their interests and promote their rights especially with regard to funding and
employment. The disabled community within the course of planning the national
disability policy has identified a number of needs including the need for different types of
self-help groups, financial support for such groups, friendly and cooperative government
relations, and finally supporting the development of self-help groups into recognized
disabled people's organizations including umbrella organizations.
The Comprehensive National Disability Policy (2003) has recognized the right of
disabled people to form their own groups and organizations and the role of government in
supporting this process. The policy stated that:
"The quality of life of disabled people improves when they actively voice their concerns
and participate in decision-making. Self-help organizations provide an effective means
through which collective capacity-building and empowerment of disabled people can be
achieved, through strengthening their lobbying power to advocate with governmental and
other civil society and their active participation in decision-making processes. The
development of such groups will be enhanced with the formation of a partnership with
the National Disability Commission and administrations in both central and local
governments."
The draft UN convention on disability strongly supports this position. Based on article 21
and 22 of the International Covenant on Civil and Political Rights, the draft recognizes
the right of freedom of assembly and of associations for disabled people. Further, the
draft in agreement with article 7 of the Convention on the Elimination of all forms of
Discrimination Against Women, gives disabled people the right to take part in the
conduct of public affairs including elections, participation in the formulation of
government policy as well as to participation in non-governmental organizations and
associations.
Self-help groups of disabled people
While the development of DPO's has been rather slow in Afghanistan, self-help groups of
disabled people have been growing in a much faster scale. This is due to the flexible
structure of these groups (i.e. can operate from home, without excessive operation cost,
etc). The widespread utilization of CBR strategy over the past few years has facilitated
the set up of these groups in local communities. The majority of these self-help groups
however, don't survive and only a few of them develop into recognized DPO's.
Currently, there are a number of informal self-help groups of disabled people in
Afghanistan. These were formed with the vision to become DPOs but remain as self-help
groups due to lack of support. These include groups for physically and war disabled
people, blind people, deaf people and one group for disabled women. These are located in
the capital Kabul although there are other self- help groups forming in the regions.
Self-help groups are independent from the government and have the potential to foster
and develop into independent DPOs with potential to lead the 'disability movement' in the
future. However, training, awareness raising, financial support, and collaboration with
other stakeholders especially the government, are all necessary for the development of
this sector. DPI Asia and Pacific has conducted leadership training for these groups in
Afghanistan during 2003 and communication continues between DPI and some of these
groups to follow up on the Kabul Declaration.
Issues and challenges
The limited resources available to the central government and its concentration on the
issue of security and building the infrastructure of the country had led the civil society
(NGOs) to play a vital role in the development process in Afghanistan. The political
conflict in the country and especially the issue of martyrs, disabled people, and refugees
had necessitated the provision of organized services to meet the basic needs of these
groups. Given that poverty is another major problem facing the development process in
the country, more NGOs have focused their work upon activities that generate income
and job opportunities for marginalized groups. A notable initiative is that managed by the
disability NGO (AABRAR) - Afghan Amputee Bicycle for Rehabilitation and Recreation
- for the economic rehabilitation of physically disabled people especially war veterans.
Increasingly, there are more development NGOs working on building the capacity of
poor local communities in Afghanistan. This is in an attempt to achieve sustainable
development for those communities. These NGOs often explore means to generate
income and improve the general standard of living for these communities. An example is
International Assistance Mission (IAM) that has a special program for blind people as
well as a credit scheme for their economic development.
Despite this, disability NGO's sector including DPO's confronts various challenges given
the complexity of their task. This includes the unplanned emergence of new NGOs, the
lack of funding, and the excessive accountability to the government [2], lack of
managerial skills in handling the work of these NGOs as well as the lack of coordination
and cooperation between NGOs themselves. An example of NGO's lack of coordination
is evident even among orthopedic INGO's and results in duplication and a drain on
resources.
Despite the contribution of disability NGOs to the development process, they have been
largely overlooked by the government and its funding priorities. New policies dealing
with this sector are therefore needed. Policies should pay special attention to the role of
DPOs in empowering the disabled community and leading the 'disability movement'
nationwide. DPOs in Afghanistan have the potential to grow into partners that
complement the government's vision for achieving comprehensive and equitable
development, especially in rural areas.
Conclusion: the Afghan disabled community and the 'disability movement'
The current democratic environment in Afghanistan has created an unprecedented
opportunity for Afghan people including those with disabilities to mobilize themselves
into groups and organizations. Based on the above analysis, it could be argued that there
is no such thing as a 'disability movement' in Afghanistan with clear structure and
operation. What exists are scattered weak organizations and self-help groups of disabled
people, all of which are characterized by little political awareness. The absence of a
national disability umbrella organization contributes to the weak disabled community in
the country.
Existing disability organisations depend largely on donor support, mainly external
support. However, the external support has been affected by a general donor fatigue and
by the fact that many donors have priority other than disability issues. Therefore, future
donor support should focus on increasing the capacity of disabled people's organizations
to enable them to lobby the government for taking disability as priority issue and hence
increasing the sustainability of DPOs.
There is no unanimously recognised umbrella organisation for disabled people in
Afghanistan. A power struggle is going on among the disabled community with
physically disabled war veterans fighting to take the lead. The number of organisations
claiming to be an umbrella in Afghanistan reflects the competitive and non-collaborative
environment within the disability community. The only organisation however, which has
a structure and a few regional branches is the National Association of Disabled Afghans
(NADA). This organization has a few members in the regions but due to lack of
resources, is unable to maintain a proper communication with regional members.
Overall, there is a lack of understanding among DPOs of each other's roles, problems and
potentials and this hampers the development of a 'disability movement' in the country.
For example, most DPOs are unclear about their mandate or mission and this results in
confusion concerning their specific role as advocacy organisation versus service provider
(i.e. deaf associations). It is in fact questionable whether 'movement' is an appropriate
term in the Afghan context, given that the majority of DPO's are service providers rather
than being political players trying to influence the political agenda.
It can be concluded that the unification of a national umbrella organisation, together with
capacity building of DPOs especially in terms of leadership training and management
skills, and supportive policies are prerequisites for the development of Afghan 'disability
movement' in the future.
References
BMF (2003) Biwako Millennium Framework for Action Towards an Inclusive, Barries
Free and Rights Based Society for Persons with Disabilities in Asia and the Pacific
(BMF). United Nations Economic and Social Council, Otsu City, Shiga, Japan.
CEDAW (1979) The Convention on the Elimination of all Forms of Discrimination
against Women.
DPI (2003) The 1 st National Leadership Training Seminar for Persons with Disabilities
organized by DPI-Asia Pacific Region, August 16-19, 2003. Kabul, Afghanistan.
DPI (2003) Draft Kabul Declaration: Towards Inclusive, Barrier-free, Rights-based
Society for Persons with Disabilities in Afghanistan. DPI Asia Pacific Region, Kabul.
ICCPR (1966) International Covenant on Civil and Political Rights (ICCPR). United
Nations, New York.
Kasnitz, D. (2001), 'Life Event Histories and the US Independent Living Movement', in
M. Priestley (ed.), Disability and Life Course: Global Perspectives, Cambridge
University Press, Cambridge, pp. 67-78.
MMD (2003) The Comprehensive National Disability Policy. URL:
www.disabilityafghanistan.org
NCC (2003) The Constitution Making Process. National Constitution Commission,
Kabul.
Notes
[1] Civil society here refers mainly to Non Governmental Organizations (NGO's)
including international ones.
[2] NGO's however, have to be registered with the Ministry of Planning to be allowed to
work only after been certified. The individual NGO has to abide by its own bylaws and
the law governing the NGO's in Afghanistan. NGO's in Afghanistan are then affiliated to
the ACBAR Network, an umbrella organization which coordinates the NGO's sector in
the country.
Sexually Competent: Physical disabilities should not
impede an active sex life
Translated by Fabiola Martínez O. (fmartinez@nacion.com) from La Nación / Costa
Rica: May 1, 2004
"With creativity, patience, and therapeutic support, persons with disabilities may
maintain an active and fulfilling life." Such is the message of Irene Torices of the
Mexican Institute on Sexuality (Instituto Mexicano de Sexualidad Humana), considered
the best specialist in sexuality and disability based in Latin America,
During her many lectures, she indicates that "the sexual life of persons who are born with
a disability or who acquire it later in life, may be affected by biological, emotional, and
social causes. Nevertheless, the difficulties may be overcome with personal effort and
adequate treatment.
Then she added: "The first step is recognizing what obstacles are impeding the person
from enjoying sex. Then, specific strategies may be developed to overcome them. For
example, spinal cord injuries usually cause erectile dysfunction in males and women to
become non-orgasmic. These type of injuries damage nerve centers linked to sexual
response, including erection and orgasm."
Mrs. Torices told us that: "the lack of optimum system functioning does not mean loss of
the ability to enjoy sex life. Sexuality is more than genital activity, it means that we all
can and should enjoy every centimeter of our skin, to awaken new sensations, and other
senses such as smell, taste, tactile, and hearing."
"When person who has a stable relationship acquires a disability, by accident, disease,
surgery, or other causes, partners in the relationship must lean to better communicate
their needs and feelings for intimacy.
"With affection and creativity, the couple will be able to explore new positions and
practices, which could make their relationship more intense and enjoyable. Sometimes it
is just a matter of beginning with the obvious details that people just simply forget or take
for granted: flirting, pre-sex, dressing up, and seduction."
Body and mind
Together with the rehabilitation process and the work with couples, pharmacological
treatment may be necessary, for example, there are some drugs that are affective in
correcting some forms of male erectile dysfunction.
Mrs. Torices explained that pills are not complete solutions, particularly where there are
other emotional or social causes needing to be addressed.
Regarding disability, whether there is a biological difficulty or not, it is possible that
people suffer from depression, anxiety or other emotional problems impeding, not just the
full enjoyment of sex, but also of other activities.
The loss of a limb, a sense or a physical function--all raise concerns about the economic
implications of disabilities, often causing psychological impacts as well. Psychological
therapy may be beneficial in dealing with mourning associated with the loss of a limb or
a function, and to strengthen other personal and social resources, including positive
attitudes.
Again, joint efforts of couples are essential to address and deal with the difficulties. By
acting together, they will not only be able to keep up with their sex life but their
relationship. "When disability occurs, what really hurts the relationship is the lack of
communication and sincerity among some couples." Mrs. Torices added "Couples must
maintain a direct, open, and assertive communications channel, without hurting each
other and with out burdening upon one of the members all the responsibilities for the
relationship. Both members of the relationship must share their thoughts and their
personal needs, what they like and what they do not like, sharing their fears and doubts.
Not just on the sexual dimension of their relationship, but everything there is regarding
the future."
Social support
The fear of being rejected tends to be greater among people with disabilities from birth or
early in life. For this reason, these individuals find it hard to begin or make the first
moves toward another person they find attractive. Some of them never achieve a stable
relationship, nor an active sexual life.
The expert mentioned that, many of those situations may be prevented if children with
disabilities are allowed to express themselves and if sex does not become a forbidden
topic for them.
At the same time, society must create the necessary spaces fostering the integration of
persons with disabilities into the community. These provisions include accessible
environments where people are able to meet, share, work and have fun, with equal
opportunities.
On the other hand, a disabled individual will have a greater possibility of developing a
successful relationship with others if he or she is sincere regarding disability and its
connections, not only with sexuality and other aspects of life. Where there is trust,
nothing should be hidden, not even impairments. People should be able to communicate
important facts about themselves, not just achievements, but limitations and problems,
not just regarding their sexuality, but their everyday life. That is the best way of building
a sincere and pleasant relationship," she concluded.
Dare to!
Couples may enjoy sex, even if there is a disability:
All of the attention should not be concentrated on the genitals: look for new sensations
through each body part.
Be creative: try different positions to enjoy sex.
Seek the help of professionals to better understand the physical, emotional, and social
difficulties of disability.
A room in the home might be redesigned or adapted for the safe practice of sex.
A healthy sexuality starting in childhood
To receive sex education in due time is as important for children born with a disability as
it is for other children. Yet, since many parents lack information, they just do not
communicate openly with their daughters and sons, particularly if they present a
disability.
Then, these children grow up with insufficient knowledge and skills to develop emotional
relationships or to enjoy sexuality, said Irene Torices, an expert in sexuality and
disability, during the National Congress on Sexuality, held in Costa Rica this spring.
"When parents have a child born with a disability, they think that she or he will always
remain a child, not needing information and unable to participate in a love relationship."
However, there is something even more alarming. Ignorance and lack of social skills
make children and young persons with disabilities more vulnerable to sexual abuse and
violence.
Torrices emphasized the importance of informing children and adolescents about their
bodies, functions, and physical changes. They all must gradually learn about sexual life,
pregnancy, birth control, and sexually transmitted diseases.
Mrs. Torices told the audience about the importance of parents and teachers respecting
the privacy of children and adolescents with disabilities, without inhibiting practices like
masturbation, so they may live their sexuality.
"Masturbation helps to know your own body and will help the person to be able to
communicate to her or his future partner how she or he would like to be caressed.
Furthermore, masturbation is still the only way for many persons with disabilities to
experience a satisfactory sexual experience in their lives."
Interview: Latin American Advocate Joins Mental
Disability Rights International
Interview with Alison Hillman by Ilene Zeitzer (ilenezdc@yahoo.com)
Q. Disability World was very taken with the fact that all of the Hearne awardees this year
were very involved internationally, which is not typical. So we like to know first about
you and your background and how you got into international work?
A. I'll start off with how I got involved in international work. It was actually pre-onset of
disability. I graduated from Cornell University and wanted to do some sort of long-term
service project in Latin America. My concentration in undergraduate had been U.S.-Latin
American relations and I was really angry about how the U.S. intervention in Latin
America had played out. So I wanted to do some kind of service project in Latin America
where I would see for myself the impact of U.S. policies.
After graduation, I went to Guatemala and joined a team of a U.S.-based NGO called
Witness for Peace. We were accompanying returning refugee populations who had fled
Guatemala in the early 80's during a time of really intense repression. The refugees were
living in Southern Mexico in U.N.-sponsored refugee camps, and we were accompanying
them back to Guatemala, living with them in their communities, and bringing delegations
of U.S. citizens to learn about their reality, who would then return to the States and do
grassroots organizing there on changes in U.S. policy. So that was how I got involved in
international work and I had worked with them for two years and worked with a U.N.
mission documenting human rights abuses and making recommendations on how to
improve the situation.
Stint in Guatemala followed by "culture shock"
Q. To the U.S. government or to the U.N.?
A. To the Guatemalan government. They were reports that went to the U.N. but they
were basically recommendations to the Guatemalan government as to how to reform and
enforce human rights. During that time, I came to the conclusion that if I really wanted to
make a difference in the human rights situation there, that I had to be a lawyer. Without a
legal profession I really felt like there were so many abuses that continued to occur and
there was really nothing I could do without a legal background. So I returned to the States
thinking that I wanted to go to law school, but fell into a severe depression when I got
back. I think it was a combination of factors, including returning to the States where I
experienced enormous culture shock after living in Guatemala for three years.
Q. What year was that, when you came back?
A. 1996. And it was not really knowing, you know, after having this international
experience, not really knowing what I wanted to do next. Thinking about law school, but
"Life in the States" seemed to be so trivial in a lot of senses. I remember coming back
and one of my relative's biggest concerns was what color off-white she wanted to paint
the wall. It was distressing. And I remember not really being able to get out of bed and
just praying that I would die in my sleep. Just really not wanting to live. And after a few
months I started to feel a little bit better.
Q. Where you getting any professional help?
A. I was. My parents convinced me to see a psychiatrist and she put me on Zoloft, and
after a few months I just felt giddy and stupid and not myself. I didn't feel like I was any
better, but just felt like this drug was making me laugh at ridiculous things. So I stopped
taking the drug and stopped seeing her. I would go to her office and sit there for an hour
staring at the carpet. I just really didn't have anything to say to her, didn't feel a
connection with her. So after a few months I had stopped taking Zoloft, and I remember
in my dreams, right around this time I started having dreams about being able to do
things. Being able to dance, being able to pick up the violin and play the violin, just being
alive again in my dreams. And I remember slowly starting to feel better, starting to
socialize again, and starting to feel much better.
Q. You sort of pulled yourself out of it without any drugs, essentially.
A. Essentially, but then I started to feel like I was on top of the world. I kind of started to
feel like I was Wonder Woman.
Working uphill against society's image of mental illness
Q. Bi-polar?
A. Right, exactly. So after a few months diagnosed with bi-polar disorder and
hospitalized and went through several months of being hospitalized and leaving the
hospital. I guess after I left the hospital, it took me a couple of, certainly a good year to
kind of begin to feel comfortable in society again. Being hospitalized was such a
frightening experience, partially because I knew absolutely no one who had had a mental
illness and was living successfully in the community. You know. The people that I saw in
the hospital were the kind of people that rotated in and out of the hospital, or you heard
about people who lived with their parents at home for the rest of their lives. So this was
the image of mental illness that I had.
Q. And you didn't have any symptoms before, you know like when you were 16 or 17?
A. No, I think I had the kind of traditional adolescence, you know....
Q. It's kind of hard with adolescents to tell.
A. Right, right.
Q. With women, it's much for common for the onset to be 15, 16, 14 even, with females.
They don't know why. Which is also one of the things that makes getting the medications
so tough. It's a question of the hormonal balances being affected more, or the medication
being affected more by the hormones. I don't know whether it's chicken and egg, but that
is a much more common situation with woman. Woman suffer from depression much
more than men do. And it's typical that people with bipolar don't like the feeling that the
drug gives them, they don't feel real. It's either real dampened, or real high, but neither is
the so-called normal feeling. But it sounds like yours was pretty....
A. Textbook.
Q. Right, not that I'm a doctor. I don't think that we understand that much about the
disease.
A. No, I don't think we really understand that much about different mental illnesses. I just
finished a book not that long ago, "Mad in America:" The subtitle is: "Bad Science, Bad
Medicine, and the Enduring Mistreatment of the Mentally Ill." It's an historical look at
the treatment of people with mental illness from basically the founding of the nation,
right up to the present day, and it's kind of an exposé on drug companies and the socalled research.
First forays back into studies
Q. So you kind of got through this episode, and then what? Decided to do law school?
A. I wasn't convinced initially that I could do law school. I remember my first foray back
into studies was taking a course in paralegal studies at a community college. When I first
left the hospital I remember being in an interview to receive social services, and the
interviewer asked me, "How do you spell house?" And I said "h-a-w" and stopped and
just asked him, "Why doesn't my brain work?" And he just kind of gave me this blank
stare. It was really disconcerting; my brain just didn't function when I first left.
It could have been the medication, it probably was, but I wasn't convinced that I could
study again at all. I really thought that I was going to live the rest of my life between my
parents' home and an institution, and never be able to have an independent life. So over
the next few months I started working at a community kitchen and that was really my
first re-socialization. I would go there twice a week for a few hours and was kind of
convinced that everyone would stare at me and point and say, "She has a mental illness."
But that didn't happen and so I started taking this paralegal course at the community
college and found that I could read, and I could analyze information, and I could write
and so little by little that seemed to be....
Q. Where you on medication at the time?
A. I was. When I first got out of the hospital I was on a number of medications and I
don't really remember what they were.
Q. Do you think that different drugs affected your memory or your cognitive processes,
or that it's just a question of getting your system used to whatever.
A. I think that's a hard question. I think initially I might have been on three or four
different medications. I was on a few of them for a number of weeks, and so it was hard
to say. I remember when I first left the hospital, it was really difficult for me to
concentrate.
Going to law school, returning to the community
Q. So then what happened after the paralegal course?
A. I got a job as a receptionist in law firm, and wasn't really sure I could take the pressure
of being in the work world but found that I did pretty well. One of their paralegals left, so
I was eventually doing the jobs of the receptionist, the secretary, and the paralegal. So I
thought if I can handle this, I might be able to handle law school. So I applied to law
school, and you know, kind of every step of the way I had questions about will I be able
to do the work, will the effects of medication prevent me from doing the reading at night?
Medication that I had been on would give me nausea occasionally so sometimes I would
just have to lie in bed and sip on ginger ale.
Q. Where did you go to law school?
A. American University. After the first few months, I felt like, you know, I think I can do
this. I can do it, I can do it.
Q. And who was encouraging you? Who supported you, and helped you?
A. Probably the person that really supported me, that helped me the most was the man I
was seeing at the time. I think that relationship really helped me to socialize again and to
realize that I could be a member of the community again. We started dating about a year
after I was out of the hospital. I met him through this community kitchen that I had been
working at, and for a long time I felt like I'm never going to have a relationship again.
Who's going to want to be with somebody with a mental illness? But he was going to
medical school, and so I thought, maybe someone who wants to be a doctor will
understand.
I remember on our second date I had said something like, "Well, I've got to take my
meds." And he said, "What do you take meds for, if you don't mind my asking?" I
explained the situation and he said, "Wow, you seem like one of the most stable people
I've ever met." And I said, "That's what Devacote will do to you." So, doing social things
with him, and realizing I could be in a social environment, and I could make conversation
and that he wasn't going to judge me for having a mental illness -- I think was the thing
that really helped me. And we were together for a little over two years, and he was just
really supportive and the biggest motivator I think, and the biggest help.
Q. What about your parents? Were they fearful, were they supportive? How did they
react through all of this?
A. When I first went to the hospital I think they were very fearful. However, they have
been very supportive through all of law school, but I think having a child go through
what I went through is really frightening.
Q. But the fact that your parents were supportive of your going to law school meant that
they really believed in you, and do believe in you. So you went through law school, and
got out?
Mental Disability Rights International
A. That's right. My last year of law school I was working as an articles editor for The
Human Rights Brief , a student-run publication at the law school, and an article came
across my desk from this organization Mental Disability Rights International. So I
thought, this is interesting: this organization works on behalf of the rights of people with
mental disabilities and maybe I could work with them. I called Eric (Rosenthal, MDRI's
Executive Director) in December of my last year in law school and proposed that we
apply for a New Voices fellowship, which is a fellowship funded by the Academy for
Education Development. They give fellowships to individuals to work at small
organizations that want to foster leadership within the organizations, from traditionally
under-represented groups. And so we applied for a fellowship, and that's how we got the
funding to do the work that I'm doing in Latin America. We proposed a project in Latin
America, which is an area of the world that I love, and had some interest in, had some
experience working in and doing mental disability work.
Challenging assignment in Paraguay
Q. How did the work in Paraguay come about?
A. We had heard that the conditions in the institution were some of the worst in Latin
America. We had heard specifically about the case of two boys who were detained in
small cells, six by six feet isolation cells, naked without access to bathrooms and, that
they had been in those conditions for a number of years. So we were involved in a return
mission to Uruguay -- Uruguay is where MDRI published its first report on mental health
and human rights about ten years ago, and Paraguay is just right next door. We planned to
do an investigation mission there immediately afterwards. We went to the airport and we
were told that we didn't have Paraguan visas and we couldn't go to Paraguay. So we had
to go all the way back in from the airport and about an hour into the center of Buenos
Aires to get visas that weren't going to be ready until the next day. But I said, I've come
this far, I'm not going to just go home at this point. So I got the visa and the next day I
went to Paraguay.
I saw the conditions in the institution and filmed them, and brought the film back to the
board members at MDRI. As a result we decided to go ahead and file what's called a
Precautionary Measures Petition in the Inter-American Commission on Human Rights.
It's a petition that orders immediate measures be taken to protect the lives, physical,
mental, moral integrity of the individuals. In filing a case, you have to exhaust domestic
remedies and that can take who knows how long, and actually filing the case and getting
a remedy could be years away. So this Precautionary Measures Petition is something
where you can get almost immediate results. And in fact, within five days of filing the
petition, the Commission ordered the government (of Paraguay) to take steps to protect
the lives, and the physical, mental, and moral integrity of the 460 people detained in the
institution.
Q. Were they all detained in conditions like in the video?
A. Yes.
Q. What was the "logic," so called, for why they had those boys in that situation? Or the
rationale or whatever you want to call it?
A. Initially, the boys had been sent to the institution by judicial order, one when he was
perhaps five or six and the other when he was seven or eight. When they first were
detained in the institution, apparently they had one-on-one nursing. This was a deal that I
think was worked out with the hospital's director and some Congress person, that they
(the boys) were going to have this one on one attention, and that was the only reason why
they were going to be allowed into this adult facility. But the money ran out for that
individualized attention and so they were put into a ward with older chronic patients. The
rationale (for putting them in tiny isolation cells) was either to protect them from the
other patients or that 'they're violent and we couldn't let them out of the cages.' When I
was there, it was kind of, "Well, we initially put them here because they needed
protection from the other patients but now they're violent, and they rip up anything that
you give them so we have to keep them in these cages."
Q. They didn't look violent in the video.
A. No, no.
Q. They looked very placid. Of course if you're confined and naked, it's kind of hard to
believe that you can be terribly violent to anyone. I just can't get past those images, that
somebody would do that. I admire you for not losing it.
A. Well.... It's difficult, it's definitely difficult work, and I remember being in Paraguay
and just, you know...
Q. What did you feel, when you first heard about them, what did you feel?
A. Extreme dismay, extreme disgust. Unbelieving, just really incredulous that human
beings were kept in these conditions. Not even zoo animals are kept in conditions like
this.
Q. And they let you video this, or you had to do it surreptitiously?
A. No, they allowed us to videotape.
Q. I'm amazed. Is it that they don't get that it's wrong? Or do they think that it has to
reach the outside world so somebody will come in and help because they are incapable of
doing it themselves?
A. It's difficult to really know. I spoke with the Director of the hospital who's a
psychiatrist and the technicians who work with him. They blamed it on lack of funds, but
also, this was their rationalization, "well, we don't have the money for the specialized
care that they need, but also they're violent."
Q. How old are these boys?
A. Now, they're probably 17 and 18. We had investigated a couple of other care facilities
in Paraguay that could potentially take them. One is a facility run by the Catholic church
which has far better conditions than the psychiatric hospital, it's clean, people are clothed,
people appear happy, they are helping one another. It has a very familial environment.
There's really a lot of love on the part of the staff and the residents all look alive. There
was another home that had 14 individuals, and it was basically run by a man and woman
with donations from the church and the parish community. And they were struggling. It
was clean, everyone had their own bed. It was also a very familial environment, but with
14 individuals they were struggling to provide quality attention to everyone.
Q. So what happened to these boys?
A. Right now they've been transferred to another part of the hospital.
Q. The same institution they were in?
A. The same institution. The hospital has remodeled what used to be a nurses station, and
so they actually have bedrooms so they are not enclosed in small spaces, they're enclosed
in slightly larger spaces.
Q. They have clothes now?
A. They wear clothes when they leave their kind of ward or area. They apparently have
24 hour one on one care. When we returned in March of this year with an investigation
team, they were clothed, they were eating a snack and the hospital staff told us there had
been tremendous advances, that Jorge (one of the two boys) was now using the bathroom,
he was learning to speak a few words, and they were kind of amazed at the progress that
he'd made. But I went back and visited a couple of times when I wasn't escorted by the
hospital staff, and they didn't have the one-on-one attention. The people that were
supposed to be attending them were kind of sitting in the office, and they (the boys) were
naked and they were sitting idly in their respective areas, their respective rooms. But I'm
not sure that it's really the quality attention that the government claims that it is. Their
conditions have definitely improved, they have access to bathrooms, they have
showers....
Situation of mentally ill people in Paraguay
Q. Do you think that they're the exception or that they represent a significant percentage
of people in similar conditions in Paraguay or other countries? I mean, I know the work
Eric (Rosenthal) did in Mexico, for example, in an institution which was horrible too.
A. There aren't as many people who are in tiny cells, but the institution itself has similar
conditions to other institutions that we've seen. People are admitted and either become
chronic patients or cycle in and out of the institution until they become chronic patients
and then end up living in the institution.
In Paraguay there are no community services at all. So when someone is admitted to the
institution for the first admission, they might become stabilized on medication and then
they'll be released but there's no place in the community that they can go to receive
medications or to receive other supports that they might need. So after a period of time,
they cycle back into the institution and this kind of cycling goes on until they become
chronic patients and they end up living in the institution. We find that many people
become what you could consider social patients, there's nowhere else for them to go. And
this is what's happened with, I think, 60% of the in-patient population of a particular
institution in Peru, and it's probably the same percentage in Paraguay.
Q. Are you doing work in Peru now?
A. We are.
Q. Where else?
A. Uruguay, and we're beginning a project in Argentina this year.
Q. And you're doing all of those, or involved in all of those?
A. Yes.
Q. And is this all being supported from the one grant from AED?
A. No. My salary is being supported through the grant from AED, but the actual
programmatic work is a number of foundations that give either general support or
specific support to our Latin America programming.
Envisioning the future
Q. What do you see, if you project five years from now, what do you see yourself doing?
A. I see us doing more of the same, but I would really love to see in the next several years
some kind of, move to litigate a case to the Inter-American Commission on Human
Rights on the rights of people with mental disabilities. I'd also like to see more
recognition of the rights of people with mental disabilities, more enforcement on the part
of the government of those rights. And I would love to see the Commission or the InterAmerican Court establish a right to community integration for people with disabilities.
Q. What about the International Court of Justice (ICJ), have they ever heard a case
dealing with the rights of people with mental illness?
A. The European Court has. The European Court has ruled on a number of cases, but I'm
not sure about the ICJ.
Q. Do you see the humanitarian aid organizations getting more onboard with this, like
Amnesty International and some of the other organizations that have in the past at least
not taken a big interest in disability? Do you think it will ever get mainstreamed into the
agenda of mainstream human rights organizations?
Current report on Argentina
A. That's something that we've been pushing for. This year, in the work in Argentina,
we'll be collaborating with Human Rights Watch, so they're actually going to be coauthors on this report on mental health and human rights in Argentina. So that's our push
-- to get some more attention and to get Human Rights Watch staff directly involved in
investigation, and documentation, and report writing. So, we're hoping that that will at
least spark some more interest within the organization to do documentation, to do human
rights reporting on the rights of people with disabilities. I know that Amnesty
International has done some work in, I think it was Bulgaria. They published a report in
November of 2002, if I'm not mistaken, on psychiatric institutions in Bulgaria.
Q. How did this Human Rights Watch project in Argentina come about? Did MDRI go to
them and get them onboard?
A. Yes.
Source of international interest
Q. Going back a bit, what spurred your involvement with international work as an
undergraduate?
A. It was actually one of my best friends from high school who was taking courses at
Cornell. I was still in high school and he was in college, he was a couple years ahead of
me in school. He had been taking courses on U.S. history in Latin America, and he had
come to dinner at my parents' house and told us about all the atrocities the United States
had inflicted on people in Latin America, and just learning about that, hearing from him
really made me want to learn more about it. And the more I learned about it, the more I
wanted to.... I remember at one point, I told one of my university professors that I wanted
to infiltrate the State Department and when I was the Director of Inter-American Affairs,
I would change U.S. policy toward Latin America, and he laughed at me. I don't have any
more fantasies about infiltrating the State Department, thankfully. So it was the history of
U.S. intervention in Latin America was really got me interested in international work.
Q. And it has always been Latin America with you?
A. It has.
Q. Did you take Spanish?
A. I did. I took Spanish in high school and in college, but it really wasn't until I went to
Guatemala that I became more or less fluent. Being immersed in the culture really helps.
Who takes Care of Persons with Multiple Disabilities in
Guatemala?
By Silvia Quan (silviaq@intelnet.net.gt)
The situation of persons with multiple disabilities, many of them presenting mental
disability, is so blurred in Guatemala. These persons have been deprived of all the rights
they are entitled to and their destiny is marked by inhuman loneliness.
This conclusion can be arrived at by simple observation of the reality surrounding these
persons, but the panorama becomes more defined as exhaustive analysis is made of
typical cases.
As it usually happens, a case involving a person with disabilities was referred to our
Office for the Defense of Persons with Disabilities of the Human Rights Attorneyship.
The case concerned a very poor man, about 30 years old, profoundly deaf with
psychiatric impairments. This man was brought to our office for help from a Senior
Citizens Home administered by a Missionary Charity, where he had probably had
become aggressive.
Accompanied by two missionaries, we took Tomás (as we called him) to the local mental
health hospital. There, as soon as the doctor on duty notice that the man could not hear,
he told us that he was not able to perform the mental evaluation because the tests
involved oral skills. I immediately express my indignation: How could this so called
physician deny a person's medical treatment just because the patient cannot hear?
Ping-pong
Worried about the implications of this situation, I began a small investigation into the
center for the persons with multiple disabilities. The results were disheartening: We do
not have any educational center for children with severe communication difficulties. On
the other hand, there is no "attention protocol" for adults with multiple disabilities, Such
panorama means that for persons with disabilities in Guatemala there is only: one
treatment (the minimum) for deficiencies and the denial of fundamental rights of people.
We visited the only center for deaf and blind children with multiple disabilities in our
country. There we found another example of how much needs to be done in this Central
American country in order to comply with human rights for persons with disabilities. The
director of this private school stated that they do not receive any support from public
authorities. Boys and girls that come to this place are usually called "ping-pong." This is
because they have been referred from one place to another, because they have been
denied the treatment they need so much and are entitled to receive. The major weakness
found is that the few services have a limited coverage and, on the other hand, persons
with multiple disabilities are greatly stigmatized in our society. All of these factors, taken
together, make inclusion into the family and the community very hard.
The situation of adults with extensive and multiple disabilities is even more
disheartening. A case like Tomas is not infrequent. Usually this group of people are
abandoned at institutions and soon are forgotten forever, they disappear from society. So
that is how and why they become so vulnerable, they are under alarming risks of
becoming the repeated victims of violations to human rights.
The most worrisome
It is no coincidence, that I was invited to deliver a lecture on the right to health for the
medical personnel of the public health system. Some members of the national mental
health hospital were present. They responded to my presentation of the Tomás case by
saying: "There are no violations in that hospital center and treatment is provided
accordingly."
I am amazed by such generalized lack of sensibility among these medical community. It
reflects the extent to which there is stigma and prejudice against persons with psychiatric
disabilities, more so persons with multiple disabilities.
Breaking the cycle
It is important to mention that the situation of persons with any disability, particularly
those presenting multiple disabilities, is determined by and immersed within the circle of
poverty and disability. To break this circle or cycle, we must address existing needs from
a global perspective: foster structural changes to break the abuse of power, negligence,
and discrimination.
We must learn to use our legal and judiciary instruments, because human rights and
fundamental liberties are guaranteed within the Constitutions of our nations. And for the
situations not contemplated, we may use the international instruments ratified and
enforced in our region.
We have to use the law and present evidence about the cases that are happening day by
day. This will be the way by which our authorities and society, in general, will develop
awareness regarding the fact that disability should not constitute grounds for denying
rights and that every human life must by respected with full dignity.
Guatemala: Leadership and Representation, a
Challenge for the Organizations of Persons with
Disabilities
By Silvia Quan (silviaq@intelnet.net.gt)
So far, the development of the organizations of persons with disabilities in Guatemala has
not achieved the necessary level of visibility and impact needed to bring disability higher
on the national agenda of the government and institutions.
Instead of using their own organizations to foster change, persons with disabilities in
Guatemala still depend on intermediary nondisabled agents, like the medical model or
social assistance. The activity of organizations controlled fully by women and men with
disabilities is just beginning in our country. Progress will depend largely on the disability
leaders themselves. That is, how much impact do they want to have on the social,
economic, and political conditions that affect all of us?
They can promote through their organizations the changes they need, building influence
on national plans, on the development of public policies, programs, and actions that will
eventually improve the living conditions of this traditionally and structurally excluded
sector.
The weaknesses diagnosed
The social movement of persons with disabilities has acquired some cohesion and
coordination, but weaknesses that limit its strengths have been detected. One is the lack
of stronger and representative proposals by disability leaders capable of impacting the
government and the State.
Here in Guatemala, the Decree 135-96, Law for the Attention of Persons with
Disabilities, created the National Council of Persons with Disabilities, as the national
agency in charge of promoting and assuring the implementation of disability policies,
plans and programs at a national level.
Half of the members of this National Council represent the public sector and the other
half the organizations of and for persons with disabilities. The majority of the
organizations of persons with disabilities only have a "formal" representation within the
National Council.
The other problem deals with marked and diverging interests between the public sector
and the private sector. This situation limits the capacity for individual members to
introduce projects or opinions on proposals being studied. Many of the representatives
from the organizations of persons with disabilities do not have sufficient social skills or
training to discuss or confront the professionals and technicians from the public sector
and the institutions. Many of these institutions operate under traditional assistance
models. So they limit the role that should be played by the representatives of the
organizations of persons with disabilities.
There are a few persons with disabilities who are developing active roles, separating
themselves from "being assisted and conducted". These persons are now participating in
political spaces where decisions regarding resources for the population are made. This
type of participation must be fostered and extended with the support of the organizations
of persons with disabilities and other excluded sectors struggling with similar types of
obstacles to inclusion
Participation in the public administration
In Guatemala, the experience with very large multi-sector councils is that very soon they
become bureaucracies. The National Council is no exception. A rapid reading of their
financial resources indicates that it uses about 70% of its budget for management related
costs, and only a very small part is destined to be invested in organizations of persons
with disabilities or for projects to improve the living conditions of the population with
disabilities.
These councils could be positive agencies if the organizations of persons with disabilities
were more strengthened and received training regarding a more inclusive and effective
way of doing political actions. We have leaders, but they are not multipliers. So there is
like a concentration of information, a monopoly of responsibilities and opportunities.
This concentration of leadership limits the growth of other members of the organizations.
These negative conditions hinder the possibilities of organizations to promote better
national disability policies.
The process of organization
In Guatemala, the organizations of persons with disabilities have begun a unification and
reflection process on ways to improve their social, political, and economical impact. We
believe that critical analysis, information, and training are aspects that have had to be
treated separately , because they are not convenient to the interests of members of the
public sector or the traditional institutions.
There is a need for discussing and analyzing aspects like representation and legitimacy of
the leaders of the organizations of persons with disabilities in the National Council, and
other national and international organizations. This reflection must generate a debate
leading to more democratic processes for electing new leaders with a human rights
perspective and respect for diversity.
Some organizations want to debate the topics of representation and legitimacy regarding
who should represent persons with disabilities and their organization at the national and
international levels. In order for democracy to work at all levels in Guatemala, there must
be a process by which persons with disabilities are able to elect their representatives. The
process should allow the inclusion of diverse proposals and perspectives from the
existing organizations of persons with disabilities. There must be dignity in the official
representation of Guatemalan persons with disabilities.
Organizations of persons with disabilities need political training, and skills for
developing strategies and relevant proposals. There is also the need of stressing the
importance of unity and coordination in the edification of the social movement of persons
with disabilities. And also the notion that we must act together with other sectors of the
civil society that are also struggling for respect and vindication of their human rights.
The growth of new organizations of persons with disabilities in Guatemala will also be
determined by the dispersion of the population with disabilities, there will be small local
organizations that need to coordinate with larger groups.
It is important to mention that important efforts are been undertaken, like the functioning
of the first organization of women with disabilities. This is part of a movement of women
organizing for their specific vindications.
Even for leaders with a clear perspective of independent living and political clarity about
human rights, the process of collective reflection on the unity of these organizations is
not an easy task.
Lastly, along the diversity of the organizations of persons with disabilities there is a long
road ahead and more discussion to be done. This is the necessary work that we must do
by ourselves, without intermediaries. And we have to do it in order to achieve a real or
the best representation for our organizations and for all persons with disabilities.
International Institute for Disability Advocacy:
Interview
Interview with Cheri Blauwet by Ilene Zeitzer (ilenezdc@yahoo.com)
Q. Disability World asked me to do this series of interviews because it's actually pretty
unusual for young Americans to work in international disability efforts. The fact is that
all three of the 2004 Paul Hearne awardees are very involved in international work. Why
did you create your own organizations, why did you feel that you couldn't work through
existing organizations?
A. Well, I guess that question realistically might have a couple of answers. First, when I
was finishing my undergrad degree, I wanted to take on an endeavor that would be
something that I could continue as I started medical school. Also after having traveled
and seeing the need for a program such as the International Institute for Disability
Advocacy (IIDA), I guess a little bit of it was probably just being young and ignorant,
honestly. And saying that, "I want to start my own thing." As I started to think about the
IIDA and as I and the people who are running it now started to take a look at the way we
wanted to run things, the more we learned about what was already out there. But at the
time we started it, we really didn't know that there are all these different organizations,
such as the World Institute on Disability and Rehabilitation International and all these
other large, well-run organizations. And so we had kind of gotten our feet wet in it before
we realized what was out there. That might not be the ...answer you're looking for, but it's
the truth.
Q. Well, the truth is always best. Tell us about your organization and what led you to start
it? You've explained that you didn't realize that there were other organizations out there,
but they may or may not have been the proper venue anyway.
A. Exactly. That being said, I think that once we did find out what was going on we were
very careful to make sure that we weren't reinventing the wheel. I think that what we are
trying to do is a really unique and powerful idea. The goal and mission of the
organization is to provide undergraduate scholarships to students with disabilities from
developing nations, or less developed areas of the world. We started the organization at
the University of Arizona, to bring students there for an undergrad degree of their own
choosing. They get to pick their major, as long as it does somehow fit into an advocacy
plan and how they best see that they can make an impact in their own nation. It could be
architecture, or it could be journalism, or it could be political science.
Disability history classes
And then at the same time as they're getting their undergraduate degree they're going
through what we call an Advocacy Training Institute. That's a program comprised of
different special classes and also internships and leadership experiences that will really
prime them to understand the history of the disability movement here in the U.S. and how
this can be applied to their own areas of the world or their own nation. So, it's kind of a
dual-fold plan to empower students with both an education and the ability to speak up for
themselves. To be confident advocates and leaders within their own nations, based on the
fact that they will be the most culturally sensitive and prepared to tackle the biggest
problems in their own countries. So rather than us going in and saying that we're going to
help individuals with disabilities within this nation, instead, we are recruiting leaders
within that nation and then sending them back. Hopefully in that way, we will create a
cadre of leaders that can form a nexus at the University of Arizona. People can come and
learn from each other and go back and start to spread those ideas around the world.
Interest in developing countries
Q. And how did you get interested in developing countries?
A. Well, I started out at the U. of A. as a molecular biology major taking science classes,
and over time, it simply developed as a natural interest. I started learning and reading
more about it and wanted to just learn more and read more the further I went. Then I
started to travel a bit, just became really interested in what was going on around the
world. I met a really great advisor at school who was always challenging me and who
helped open my eyes to what was going on around the world. After I finished all my
sciences classes, I took a lot of electives on international development. In retrospect, I
probably should have just majored in that.
Q. What countries did you visit once you became interested in the developing countries?
A. Well, I'd still like to visit more, of course, and the wheels and cranks are turning to see
how I can get back out there right now. I think about half of Europe, South America,
Argentina, with side trips to Peru and Brazil, Uruguay, and then some areas of Asia Korea and Japan.
Sources of funding
Q. And where does your organization get its funding?
A. We're just getting off the ground. For right now, the program is bringing students over
from the University of Sonora in Hermosillo, Mexico. That was a really good place for us
to start because the University of Arizona already had an exchange program running, so
we can bring over students with disabilities and not have to pay out of country tuition for
those students. Instead, because that exchange has already been set up, the Mexican
students with disabilities can pay their home school tuition and come to the U. of A.
That's been a really good approach for us to start because we haven't had to have a lot of
funding to do that. So far we've just applied for mini-grants and those kinds of things.
Q. To the University itself or outside?
A. Outside, and the University is also supplying some waivers and different things to
provide in-kind support.
Collaboration with Disability Resource Center
Q. Describe how you're working with these students and how that intersects with the
University itself. Does your organization have status with the University per se?
A. Yes, well we've decided to stay separate from the University so we're not an office
within it, but we fully utilize the Disability Resource Center (DRC) at the U. of Arizona,
which is pretty cutting edge. Being an undergrad there myself, I realized that their
advisors are really an excellent resource for us. So we get to use their academic advisors
and our students can be a part of the adaptive sports programs that the DRC runs. They
do internships with people at the DRC; for example, the physical therapists and the
people who have a wheelchair repair shop there, so those are actually a couple of the
internships that are part of the Advocacy Training Institute. It's a pretty comfortable
relationship because the DRC has always kind of seen its audience and its target group as
both the community and students at the University. The other thing is now that we've
gotten that program kind of up and running a little bit with the minimal funding that we
have, we're applying for some larger funding. Right now we're mostly a grant program
with USAID. That's going really well.
Q. So you're applying for a grant or you have a grant?
A. Applying for. We actually put in a proposal for it last year and were turned down, with
the promise that if we made specific changes that they were requesting that we probably
would be able to be funded this year.
Q. And what happens, for example, if the University gets a foreign student who has a
disability? Would they think automatically to refer that student to you?
A. Oh yeah. Well, anyone who goes to the Disability Resource Center will automatically
be funneled to us as a possible student if they want to take part in the IIDA. As it as now,
there's probably between five and ten international students at the University with
disabilities. We don't have the large-scale funding to pay their tuition yet. Most of them
are very active in what we're doing and they're volunteers for us. I think those are some
of the students that are currently doing that Advocacy Training Institute.
Q. Do you have a Web site?
A. Yes, it's www.iida.us.
Q. You basically have said that you got interested in developing countries and you
decided to start this organization, somewhat in ignorance of other organizations that were
doing perhaps the same kind of work, although I actually don't think so.
A. Definitely, I think as we found out what was out there, we said, "What do we need to
know?" We decided we would redefine our goals and our mission according to what was
already happening, but it turned out we didn't need to at all. There's a lot of collaboration
and partnerships that can happen, but no one is really doing this type of program.
Current obstacles
Q. And what were your obstacles? What are your current obstacles?
A. Right now our largest obstacle is that I and two other people are directing this and we
see the huge potential that the IIDA holds. There are so many people who really love the
idea, who are really supportive of what we're doing. I'm sure there are many sources of
funding out there for projects like this, especially if we were interested in working in the
Middle East or other areas that are the focus of government funding right now. I think our
biggest obstacle is time, in that we're all students, and none of us is able to say that we're
going to take this on as a full-time commitment. That's what's most frustrating about it
because we see that potential, it's right in front of us. At the same time, we're obviously
always studying and doing other things that prevent us from applying to all these larger
sources of funding right now. I mean, that could definitely change. We keep plugging
away at it as much as possible, but that's our biggest obstacle.
Q. Does the University give you any kind of administrative help other than the kind of
referrals and things that we've already talked about?
A. We have one lady who's kind of an assistant, an employee of the Disability Resource
Center, who helps us out with some of the logistics, but definitely not a full-time
administrative assistant. Actually for this USAID proposal she's helping us out a lot
because the U. of A. would be one of the direct applicants, in that the USAID call for
proposals is for universities. So, IIDA is running this program on behalf of the U. of A.
The first goal is for money that we can get to allow us to hire someone -- that would be a
really big step to help us to grow a lot faster.
Envisioning the future
Q. How do you see this organization in five years? What do you foresee for it? Do you
see it being incorporated in some larger national, or even international, organization?
A. I think one of our main goals is to keep it as its own entity, and not to have it be within
the bureaucracy of some other organization, especially the University or the government.
We really want to maintain our own identity, and to continue to grow and to take on
projects as we can. Once we get this project in Hermosillo really running and well-oiled,
then to expand possibly to either other universities in Mexico or else to another country.
It's really worked well for us to have a partner university. We might find a partner
university in other areas of the world where they utilize the resources that are already
there and incorporate people with disabilities into what's happening there and include
them in the exchange.
Q. You're a medical student now, are you not? How does this all fit with that?
A. Good question! You know, that's one of the reasons that the IIDA is not leaping
forward, by leaps and bounds on a daily basis. I think that's what I meant when I said that
we see the potential but right now -- the other two directors are also Masters students-we know we can't really drive forward to tap the full potential at this time. That's exactly
why, because med school is pretty much a full-time commitment. And it's not something
I'm willing to give up. I would love to say that I would be able to just run the IIDA and
that was my job. There are some programs out there that pay people to start an NGO, like
Echoing Green. I know there are some other foundations that pay about $40,000 a year so
that you can make yourself an employee and get your NGO off the ground. And I would
love that, but at the same time I'm not ready to give up this opportunity that I have where
having gotten into med school, I have the potential to be an MD, so that is the main thing
in my life right now. I mean, it takes over. It's pretty much a full-time job.
Q. Well, it may be a good thing. You're learning as you're doing.
A. Exactly, if nothing else it's been an incredible experience in learning how the
nonprofit world works, how to apply for grants and about different funding organizations.
I just think, we have our little program clicking right along and we're happy with that and
we know that as long as we can keep that going, then we have a lot of opportunity to
grow it into the future.
Russian Disability Organization Seeks Partnership with
U.S. Independent Living Center
Invatur, a disability organization in Nizhny Novgorod, Russia, is looking to develop a
partnership with a well-established Independent Living Center to learn about how to
politically and financially operate and deliver IL services. Invatur's chairman has
previously visited a few IL centers in the U.S., but those centers did not provide the range
of services that they are planning to provide in a Russian city.
Invatur wants to develop a multi-service center where people can learn job skills, receive
counseling, learn about and obtain assistive technology/adaptive equipment. They want to
create a one-stop center where many services are available, because transportation and
access is very difficult in their region. The local city government has offered to provide
some financial support and the local office of the Ministry of Social Protection has
offered office space in the rehabilitation hospital. Locally there are divided opinions
about whether it is wise to accept free office space in a rehabilitation hospital for an
independent living center. They are also planning to set up a business to provide partial
financial support of their ILC programs and activities, which is a very typical approach of
Russian disability NGOs.
Invatur is especially interested in partnering with a multi-service IL center with
educational, vocational, computer training programs or adapted sports programs in hopes
of learning how such centers can effectively deliver a wide range of services. They are
aware that ILCs employ disabled people and would like to discuss the ideology and the
practical experiences of employing disabled persons as service providers, managers, etc.
since they are under pressure by their government partners and funders to hire nondisabled "professionals."
Since they are establishing their own ILC in 2005, Invatur quickly needs to begin
receiving technical assistance and best practices in how ILCs are managed; who is
responsible for determining which services are provided, including long-term planning;
how to creatively identify local funding for the IL centers; what types of resources can be
used to implement and deliver services; whether volunteers can be effectively used and if
so, how are volunteers integrated and motivated.
For more information, please contact Invatur Chairman Rafik Remikivich at raf@kis.ru.
They have the ability to communicate in English, and the English version of their website
is located at http://www.anisnn.ru/invatur/index_e.html.
How Now Blind Cow or Dining in the Non-Light in
Zurich
By William Rowland (Rowland@sancb.org.za)
I have come to this Zurich restaurant, with a sighted friend, to see how people react to
temporary blindness. Because this is the supposed experience offered by the Blindekuh, a
restaurant where people dine in the dark.
At the reception we are asked to give up jackets and handbags, and anything that can trip
people up. Also, cellphones, luminous watches, and the like. When asked for my white
cane I hesitate, but then, to my surprise, I let it go without a peep.
We linger in the half-light of the ante-room for the eyes of my sighted companion to
adapt. Then we thrust our way through the blackout curtain into a starless night.
We make a train and Rita, our blind waitress, steers a perfect course through the table
chatter straight to our places. We orientate ourselves for a moment and then sit down side
by side, rather than across from each other, and I notice a German-speaking couple to my
left, seemingly quite oblivious to our arrival.
When Rita returns, it is to talk about the menu and take our wine order. Three starters,
three main courses, and a couple of desserts - keep it simple is the wisdom at work here.
Rita delivers a Swiss red, opens the bottle, and pours a sip to taste. She does this so
naturally that it could be a relaxed evening out anywhere. But this is not just anywhere:
this is the Blind Cow restaurant where we are playing a kind of blind man's buff.
Our first course is an unconvincing carpaccio. In fact, afterwards my companion insists
that it was fish. However, we tackle our main course with relish.
The situation being quite normal for me, my sliced duck with a chutney sauce and
basmati rice presents little challenge to knife and fork, although I cheat with the fingers
more than usual. The undissected red snapper on my partner's plate is a different story,
but with hackings and stabbings she gets through well enough, and without waste on the
tablecloth, which earns her my congratulations.
As we eat I listen to the conversation around me. There is no background music, so I can
hear across the room. There is a lot of laughter, I notice, but it seems to be the congenial
laughter of enjoyment and not people laughing at the situation.
I introduce myself to the person next to me: Sabine is a secretary in the tourism industry
and she has found the experience fascinating. But the evening has lasted long enough and
she needs to get outside.
Then we come to the only false move of the evening, and it is mine. Rita steps around the
table to collect my plate and to be helpful I lift it towards her. The plate is tilted and my
fork clatters to the floor. I apologize and Rita gives a little chuckle: it's okay.
As we tuck into our vanilla flan on assorted berries, I share my thoughts. Blind people do
not live in darkness. We experience the world through the senses we have, and this does
not include sight. To say that dining in the dark simulates blindness is untrue. Perhaps the
adventure sensitises people to vision loss, but not to blindness. We are altogether at home
in the non-light.
Aptly, the evening ends on a bizarre note. The taxi driver summoned by the restaurant to
fetch us has a question to ask, but we cannot understand his German. Apparently he
wants to know whether my companion is my guide dog, because he resorts to vigorous
barking with a kind of question mark in his voice. And we crack up.
That was our biggest laugh of the evening.
Venezuela: Ibero-American Summit on Sports and
Recreation for Disabled Persons, November 2004
Lenín Molina Peñaloza, President of the Ibero-American Network of Organizations of
Persons with Disabilities and Eduardo Álvarez, President of the National Institute of
Sports of Venezuela, announced the upcoming First Ibero-American Summit on Sports
and Recreation as part of the Ibero-American Year of Persons with Disabilities.
This announcement was made June 11, on the Island of Margarita, during the celebration
of the IV American Summit on Sports, inaugurated by the Minister of Education and
Sports of Venezuela. Ministers, vice ministers, and presidents of the institutes of sports of
America and the Caribbean participated.
This event has been programmed pursuant to the United Nations Standard Rules on Equal
Opportunities for Persons with Disabilities, and to the policies of the Ibero-American
Network of Organizations of Persons with Disabilities and the National Institute of Sports
of Venezuela.
The First Ibero-American Summit on Sports and Recreation for Persons with Disabilities,
will take place November 21 through 28 at the facilities of the Latin American Sports
Foundation and the National Institute of Sports, Villa Bolivariana de Barquisimento,
Lara, in the western part of Venezuela..
This First Summit is being organized into three sections: Section on Sports and
Recreation Associations of Persons with Disabilities; an Academic Section with six
seminars; and a Competition Section.
Among the activities planned: Ibero-American Gathering of Sports and Recreation of
Persons with Disabilities, an Open Latin American Championship, and six IberoAmerican Seminars.
These seminars will cover the Sporst Classification for Athletes with Cerebral Palsy,
Blind, Intellectual Disabilities, Physical and Motor Disabilities; New Trends in Psycho
and Motor Components of Sports; and Athletics and Basketball for girls and boys with
intellectual disabilities. There will be presentations by experts from Spain, Brazil,
Mexico, Canada, Argentina, and Venezuela.
For more information, email ahiquel@latinmail.com or margott@intercable.net.ve
Website chronicles disability rights, independent living
movement
BERKELEY, Aug. 10, 2004 --Nearly 100 in-depth oral histories and a collection of
unique archival materials documenting the disability rights and independent living
movement are now available online through a new website hosted by the University of
California, Berkeley and compiled by the university's Bancroft Library. Interviews with
movement leaders, participants and observers, along with documents, photographs and
audio and video clip offer a rich historical resource. Activists in Berkeley, Massachusetts,
New York, Texas, Chicago, and Washington, D.C. contributed to the collection.
"Videotaped group interviews in Boston and New York City, for instance, show the
interaction between people who have worked together for decades as they recall key
moments in creating a social movement," says the university in a press release.
In addition to the oral histories, the collection contains a wealth of documents -- poet
Mark O'Brien's published and unpublished poems and other writings; papers of Ed
Roberts, noted national leader from Berkeley; and records from the World Institute on
Disability. The site is: http://bancroft.berkeley.edu/collections/drilm/
Independent Living briefly
Russia to Eliminate Soviet-Era Benefits: Cash Would Replace Social Safety Net in
Putin's Controversial Plan
Russia is trying to dismantle the remnants of the Soviet-era social safety net for
approximately 100 million of its poorest citizens, replacing many free services with cash
payments. Putin's controversial plan would eliminate such benefits as free public
transportation, free medication and cut-rate vacations for retirees, war veterans and other
people categorized "socially vulnerable" by the Soviet Union. Thousands of protesters
have gathered in Moscow in recent weeks to rally against the law that provides money in
lieu of benefits. Ten regional governors also protested in a joint letter to the Kremlin,
complaining that the cash payments would impose a burden on the regions. The plan
replaces the eliminated benefits with cash payments ranging from 800 rubles ($27) to
3,500 rubles ($120) a month. Opponents have noted that the measure targeting Russia's
most vulnerable citizens comes at the same time another Putin-supported measure that
would guarantee social benefits for several million employees in the massive federal
bureaucracy, entitling them to the same free transportation, medical care and low-cost
vacations now being withdrawn from war veterans and others, is moving through
parliament. To read the entire Washington Post article online, please visit
http://www.washingtonpost.com/wp-dyn/articles/A35364-2004Aug2.html.
U.S. Department of Justice finds the state of California contributing to unnecessary
institutionalization at a San Francisco nursing home
The U.S. Department of Justice recently announced the results of its investigation into the
State of California's role in the unnecessary institutionalization of residents at Laguna
Honda Hospital and Rehabilitation Center in San Francisco, California citing evidence
that the state is contributing to the unnecessary segregation of individuals with disabilities
residing at the 1,200-bed nursing home. The Department's findings were transmitted in a
letter from R. Alexander Acosta, Assistant Attorney General for the Civil Rights
Division, to California Governor Arnold Schwarzenegger. To read the Justice
Department release, please visit
http://www.usdoj.gov/opa/pr/2004/August/04_crt_537.htm.
Preceding stories compiled and edited by Jennifer Geagan, World Institute on
Disability (Jennifer@wid.org)
Reprinted from Independent Living Institute Newsletter, June 2004
(www.independentliving.org/newsletter/newsltrindex.html)
Editorial
Independent Living Developments Around the World
The Independent Living Movement continues to expand around the world and into the
vocabulary of service providers and policymakers. For example, the United Nations'
International Day of Disabled Persons, December 3, 2002, had "Independent Living and
Sustainable Livelihoods" as its theme; in the European Union, the term is frequently used
in calls for proposals and other official documents. The motto of the EU's European Year
of People with Disabilities was "Nothing About Us Without Us," a slogan usually
ascribed to Ed Roberts who is considered by many to have been the father of the IL
Movement.
Disabled people working in the field are noticing that it is easier for service providers and
policymakers to use a new term than to fully grasp its contents. The discrepancy is
painfully recognized, for example, by the inmates of residential institutions that proclaim
to be "Residences for Independent Living" but do not materially differ in their
exclusionary and stigmatizing function from institutions that carry more old-fashioned
but honest names.
Even within our movement our definitions may not always overlap as we emphasize
different aspects in our interpretations of the term depending on our country, political
persuasion, extent of perceived discrimination, age and personal experience.
For this edition of our newsletter, we compiled a series of articles from around the world
to reflect the growing diversity, shifting focus and needs of the individuals, groups and
organizations that consider themselves a part of the movement. We may differ in
emphasis, but some essentials remain: the demand for the individual's self-determination
and self-representation, respect for life and diversity, peer support and the belief in
personal growth for all.
Adolf Ratzka,PhD, Director,
Independent Living Institute.
Articles About Independent Living Developments Around the World
1st European Congress on Independent Living. 2003-04-26. "Tenerife Declaration Promote Independent Living - End Discrimination against Disabled People." From the
1st European Congress on Independent Living, Tenerife April 24-26, 2003. Internet
publication URLs: www.independentliving.org/docs6/tenrife20020426en.html and
www.independentliving.org/docs6/tenrife20020426en.pdf
Belli, Raffaello. 2003-03. "Independent Living and some Italian Experiences." Internet
publication URL: www.independentliving.org/docs6/belli200303.html
Presented at the European Network on Independent Living (ENIL) conference in
Southampton, England, 7-9 March 2003.
Berg, Susanne. 2003-05-20. "Personal Assistance in Sweden." Plenary presentation at:
Personal Assistance in Practice - A Conference Organised by the Swiss Association for
Social Policy (Persönliche Assistenz in der Praxis - Eine Informationstagung der
Schweizerischen Vereinigung für Sozialpolitik), Hotel Bern, Bern, Switzerland. Internet
publication URL: www.independentliving.org/docs6/berg20030520.html
From the perspective of a personal assistance user, the author describes the background
and development of the legislation in Sweden dealing with personal assistance through
direct payment. The power issues surrounding establishment of the Stockholm
Independent Living Cooperative (STIL) are also addressed.
Bollard, Joe. 2003-09. "ENIL's Strasbourg Freedom Drive 2003." Transcript of the radio
programme, 29:49 minutes, RealAudio format, 4.6 MB (download or listen on-line).
Internet publication URLs : www.independentliving.org/radio/bollard200309.rm
(download), www.independentliving.org/radio/bollard200309.ram (listen on-line), and
www.independentliving.org/radio/bollard200309.html.
In September 2003, ninety assistance users from ENIL, the European Independent Living
Movement, converged on the European Parliament in Strasbourg to present their key
demands (see www.enil.eu.com/sfd/8demands.htm) for the inclusion of people, who need
personal assistance, in mainstream society. Joe Bollard, the producer, is from Dublin, and
is blind.
Campbell, Jane. 2003-05-23. "Building an Independent Living organisation fit for the
twenty first century. Underpinning organisational development with empowering
principals." Internet publication URL:
www.independentliving.org/docs6/campbell20030523.html
Dr. Jane Campbell, Chair of the Social Care Institute for Excellence in England,
contemplates the future of Independent Living organisations, including work together
with non-disabled persons (which she calls, "the mutuality route.") She concludes, "our
independent living organisations to be fit for the 21st century we must have principles of:
full inclusion, valuing diversity, equality of opportunity, human rights, civil rights, and
citizenship."
Campbell, Jane. 1996. "'Growing Pains,' Disability Politics - The journey explained and
described." Internet publication URL:
www.independentliving.org/docs6/campbell1996.html
The author attempts to shed some light on the complex and often quite hidden political
process of the Disabled Persons Movement over the past 30 years. She concludes, "The
development of the social model and its journey into the very fabric of our communities
through social, political and economic infrastructures, gives the disability movement the
authority to say we have emerged."
European Center for Excellence in Personal Assistance. 2004-05. "Model National
Personal Assistance Policy." Internet publication URL:
www.independentliving.org/docs6/ecepa200405.html
As a result of project ECEPA, European Center for Excellence in Personal Assistance,
the eight Independent Living partner organizations, with Adolf Ratzka as editor and
coordinator, formulated a model national personal assistance policy for selfdetermination and full citizenship of people with extensive disabilities.
Hasler, Frances. 2003-03. "A summary of the Department of Health (DoH) Figures for
Direct Payments Users in the UK in 2002." Internet publication URL:
www.independentliving.org/docs6/hasler200303.html
Presented at the European Network on Independent Living (ENIL) conference in
Southampton, England, 7-9 March 2003.
Martinez, Kathy, and Duncan, Barbara. 2003-09. "The Road to Independent Living in the
USA: an historical perspective and contemporary challenges." Reprinted from "Disability
World, A bimonthly web-zine of international disability news and views," Issue no. 20
September-October 2003. Internet publication URLs: www.disabilityworld.org/0910_03/il/ilhistory.shtml and www.independentliving.org/docs6/martinez200309.html
The authors (Kathleen Martinez, US National Council on Disability member and Deputy
Director, World Institute on Disability, and Barbara Duncan, former Rehabilitation
International information officer, DisabilityWorld co-editor) highlight the events and
leaders that made the birth of the independent living movement possible. Also included
are some basic philosophical tenets and assumptions that have guided the U.S. IL
movement, as well as some observations regarding emerging issues and trends.
Rajkov, Gordana. 2003. "Inependent Living and Yugoslav Experience." Internet
publication URL: www.independentliving.org/docs6/rajkov200303.html
The report presented on behalf Centre for Independent Living of Serbia, at the Europena
Network on Independent Living (ENIL) Conference in Southampton, England, 7-9
March 2003. Gordana R. is a founding member of CIL in Serbia, and in the report she is
explaining the current situation of disabled people in Serbia in the light of economic,
social and political context, and CIL's efforts to promote the idea of Independent Living
Phylosophy in Serbia, particularly the PA Service, through pilot projects and research.
Ratzka, Adolf. 2003-08. "From patient to customer: Direct payments for assistive
technology for disabled people's self-determination." Internet publication URL:
www.independentliving.org/docs6/ratzka200308b.html.
The author, AT user and activist in the Independent Living movement, claiming that
direct payments for AT result in better quality and cost-efficiency than services in kind,
suggests a pilot project to test the hypothesis. Plenary paper presented at the 7th
European Conference for the Advancement of Assistive Technology, "Shaping the
Future", Dublin, Ireland, August 31st - 3rd September 2003.
Seifu, Michael. 2004-02. "Reflections by a Disabled Economist from Ethiopia." Internet
publication URL: www.independentliving.org/docs6/seifu200402a.html
The author, a trained economist with a disability living and working in Ethiopia,
describes the experience of disability in the context of a developing country.
Seifu, Michael. 2004-05. "International cooperation - but how?" Internet publication
URL: www.independentliving.org/column/seifu200405.html
The author, an economist in the Ethiopian government who has a disability, shares his
views on the bottlenecks of present international development aid.
Uddin, Salah. 2003-09. "Disability Situation & Impact of ADD work in Bangladesh."
Action on Disability and Development (ADD), Bangladesh. Internet publication URL:
www.independentliving.org/docs6/uddin200309.html
Uloba, Norway. 2003-03. "Uloba - Independent Living Norway Cooperative for
Consumer controlled Personal Assistance." Internet publication URL:
www.independentliving.org/docs6/uloba200303.html
Presented at the European Network on Independent Living (ENIL) conference in
Southampton, England, 7-9 March 2003.
Chapters from the forthcoming English version of: Alonso, J. Vidal Garcia. 2003.
"El Movimiento de Vida Independiente, Experiencias Internacionales." ("The
Independent Living Movement: International Experiences.") Internet publication URL:
www.independentliving.org/docs6/alonso2003.pdf (In Spanish, PDF, 1.46 MB).
Heumann, Judith E. 2003. "Foreword to The Independent Living Movement:
International Experiences." Internet publication URL:
www.independentliving.org/docs6/heumann2003.html.
Judith E. Heumann, MPH (Masters in Public Health), Advisor on Disability and
Development, The World Bank tells about her own life and how as she was continually
aware of the invisibility of disabled people in society. In her work with the World Bank,
she has travelled widely and points out, "Poverty and social discrimination have gone
hand in hand."
Barnes, Colin. 2003. "Independent Living, Politics and Implications." Internet publication
URL: www.independentliving.org/docs6/barnes2003.html.
Colin Barnes is Professor of Disability Studies and Director of the Centre for Disability
Studies in the Department of Sociology and Social Policy at the University of Leeds,
England. In this chapter of the book he gives a concise explanation of orthodox thinking
on disability and an a different perspective developed by disabled people themselves. He
then examines the concept of independent living and its impact on policy development.
Evans, John. 2003. "The Independent Living Movement in the UK." Internet publication
URL: www.independentliving.org/docs6/evans2003.html.
John Evans was one of the founders of Project 81 that marked the beginning of the
Independent Living Movement in the UK. Since 1996 he has been the chair of the
European Network on Independent Living (ENIL). In this document he gives an
overview of the origin of the Independent Living Movement in the UK, it's development
and evolution, as well as the current situation.
Hasler, Frances. 2003. "Philosophy of Independent Living." Internet publication URL:
www.independentliving.org/docs6/hasler2003.html.
Frances Hasler, Chief Executive of the National Centre for Independent Living, UK,
summarises the philosophy of independent living by quoting Philip Mason, John Evans,
Adolf Ratzka, Martin McNaughton, and others. Included is a summary of the seven
"basic needs" of independent living identified by Derbyshire CIL.
Malinga, Joshua T. 2003. "The African View of Independent Living." Internet
publication URL: www.independentliving.org/docs6/malinga2003.html.
Joshua T. Malinga, Secretary General, Pan African Federation of the Disabled (PAFOD),
and Past World Chairperson, Disabled Peoples' International (DPI) gives an overview of
Indepedent Living in Africa. He concludes that, "Independent Living in Africa is
basically in theory form and is still in its rudimental stages due to a number of factors."
Martinez, Kathy. 2003. "Independent Living in the U.S. & Canada." Internet publication
URL: www.independentliving.org/docs6/martinez2003.html.
Kathy Martinez is International Director and Deputy Director of the World Institute on
Disability, Oakland, USA. She gives an overview of events in the U.S. and Canada that
made the independent living movement possible. She also covers the basic philosophy of
the U.S. IL movement, as well as emerging issues and trends that challenge the IL
movement.
Ratzka, Adolf. 2003. "Independent Living in Sweden." Internet publication URL:
www.independentliving.org/docs6/ratzka200302b.html.
Account of the emergence of the Independent Living movement in Sweden, the social
policy climate at the time, its struggles, achievements and challenges from the
perspective of the person who introduced the independent living concept to Sweden.
Zarb, Gerry. 2003. "The Economics of Independent Living." Internet publication URL:
www.independentliving.org/docs6/zarb2003.html.
Gerry Zarb, a Policy Analyst at the Disability Rights Commission in the UK, examines
some main issues in the economics of independent living. His main theme is that
expenditure on independent living schemes should be seen as a form of positive
investment.
Other Services
Study and Work Abroad for All
By collecting relevant information in one place, we want to increase the possibility for
applicants to find appropriate locations, accessible companies or educational institutes,
possible funding, and information on how, for example, assistance and transportation
functions in other countries. Furthermore, we want to exert an influence on companies
and universities so that they concentrate on accessibility and perceive the possibilities,
rather than the problems, with diversity. The companies and universities that participate
in the project will be able to update their information themselves.
Accessible Vacation Home Exchange
Swap your home during your next vacation with somebody in such destinations as
France, Egypt, the UK, or Canada. We have over 300 attractive offers waiting for you!
Our base of participants lists the accessible features of their homes and dates they wish to
travel.
Assistant Referral Service
Many persons with extensive disabilities use paid workers for such daily tasks as getting
bathed and dressed, shopping, driving their car, assistance at work for those tasks they
cannot do by themselves. Our referral service matches assistance users and assistants in
their hometown or in other parts of the world, for live-in or part- time positions or as
travel companions.
Global Networking
Global Networking now has 300 organizations from around the world offering
information to partner organizations for joint projects, events, sharing resource persons
for lectures, training or technical assistance, for study visits, internships or other
cooperation including funding. Add your organization now.
Our Online Library
Check out our ever-growing full-text on-line library containing hundreds of articles on
independent living, Universal Design, human rights, legislation, progressive programs
and other examples of good practice, women with disabilities, assistive devices, national
policies of various countries, and much more, so check back often!
Discussion Forums
Regardless of what you have on your mind, you'll find an appropriate discussion forum
that allows you direct contact with the thousands of visitors to our site each month.
Access & Technology
Proposing an Accessibility Agenda for Afghanistan
By Majid Turmusani (the author specializes in disability and development issues with
policy research experience from Afghanistan)
Access and accessibility issues
An effective inclusion strategy for the largely excluded disabled population in
Afghanistan requires a comprehensive rehabilitation program including a welfare support
system. Inclusion will be possible within a barrier-free environment that takes universal
design ideals on board. It is not enough to make buildings accessible if there is no
accessible transport system to get people to such places. Equally, it is important for
disabled people to have accessible housing so that they can live independently. An
accessible environment can be useful not only to disabled people but to everybody
including the elderly population, pregnant women, children, and other groups.
Central to accessibility standards is an information and communication system that
covers all types of disability, gender, geographic area, and all age groups. This system
may include training programs and provision of specialist devices when necessary. This
is in line with development approaches to advancement of persons with disabilities
promoted by World Program of Action Concerning Disabled Persons (Rapley, 2003).
The issue of accessibility cuts across and intersects with all areas of disabled people's
lives. The draft new UN convention on disability recognized the cross cutting nature of
accessibility in all other areas of disabled people life as an issue of rights. In fact all rights
are interdependent and intersect with each other. For example the right to assembly is
dependent on the right to participation and participation would not be possible if both
physical accessibility and accessible information are not ensured.
Access and accessibility are generic terms and often used interchangeably within
disability literature. Both terms however, imply participation, involvement and inclusion
and they are regarded as unconditional rights for disabled people to enjoy services,
programs and take part in planning process in society. While access often means the right
to obtain and use certain services, accessibility refers to modifications made to these
services such as environmental changes including modified communication systems,
information, and policies. In this analysis the emphasis is placed on accessibility as an
issue of rights in line with disabled people's rights as promoted in the Standard Rules
(UN, 1994), the Biwako Millennium Framework - BMF (2002) and the draft new
disability convention (2003) .
In policy planning terms, accessibility means measures taken to ensure a barrier- free
environment. This includes primarily physical barriers such as architectural barriers
manifested in steps, and inaccessible working places, etc; attitudinal barriers such as
educators' and employers' fears and prejudices about disabled people etc; and societal
barriers such as a lack of provisions resulting in unequal service to disabled people
compared to the general population. For example, the lack of availability of sign
language in schools often leads to exclusion of deaf children.
Accessibility also concerns all categories of impairments including those relating to
people with invisible impairments such as deaf people. It also concerns people with
visual impairments, those with learning or mental impairments and others. Disabled
people's lack of access to service provisions is largely due to societal barriers. These
barriers vary greatly for different groups of disability. Access issues for people with
mobility problems is often related to the physical environment whereas access issues for
people with sensory impairments including blind, deaf and intellectual impairments more
often concerns communication and information services. Planning policy at national level
will essentially require addressing such issues so that policies are themselves inclusive to
everybody.
Communication and assistive devices
Accessibility issues include technologies that are used to assist disabled people in their
daily life activities such as their personal mobility (physical rehabilitation including
devices), and communication tools. Whether in the home, at work or leisure, technology
plays an important role in the lives of people with disabilities, and also in the way that
disability is experienced, and framed in society.
The physical rehabilitation aspect of accessibility is relatively more developed in
Afghanistan compared to communication systems. This is due to the war situation and to
the resulting increased international support to medical rehabilitation, especially for
orthopedic technology. While this is something positive, it is important to note that these
technologies have negative side effects and may reduce the independence of disabled
people and lead to their exclusion. For example, it became a common practice in
Afghanistan that people with limited mobility who could move around with crutches are
often prescribed wheelchairs as a solution to mild functional limitations. Similarly and in
the long term, communication tools including computers with access to internet can also
result in spending substantial periods of time at home instead of going out and interacting
with society, thus creating a new form of exclusion. This is still not addressed in
Afghanistan and future intervention should take this risk into account.
On the other hand there are a number of partners providing orthopedic devices notably
the International Committee for Red Cross (ICRC), UN Comprehensive Disabled Afghan
Program, and Sandy Gall Appeal for Afghanistan. Like the rest of disability services in
the country, orthopedic services are also not evenly distributed and they are concentrated
in a few places only. It is not unusual to find orthopedic services over-serving a given
community while many other places have total absence of such services. Many partners
also focus on artificial limbs leaving out important need for splints, frames and other
smaller items not met.
Maintenance of these devices remain a problem from the perspective of disabled users
due to the changing needs of young users who grow up rapidly and require new devices
on a regular basis. This problem is perpetuated by the far distances between locations of
these orthopedic workshops.
Coordination is notably needed in the field of orthopedic devices as well as in other fields
related to physical rehabilitation in Afghanistan. An appropriate technology for
standardization of devices is needed throughout the country and this includes addressing
the training needs of professionals.
Currently there is no government strategy existing to deal with the physical rehabilitation
needs of disabled people including orthopedic devices. Even eye and ear care is not
included in the government health plan. This means that the prevention of blindness and
deafness and intervention services are left to the civil society to deal with, largely through
international NGO's. This limits the scale and scope and services provided due to the
priorities of these organizations. For example, only recently has an NGO taken the
initiative to set up hearing aid production in Afghanistan.
Overall, classic disability technologies, such as the wheelchair, prosthesis, and hearing
aid are being used in Afghanistan on a limited scale. As noted earlier, due to the
conditional funding of donors, the majority support currently is given to orthopedic
workshops, a funding priority which often results from a lack of insight into the real
needs of the target group. The new technologies, including digital and medical
technologies, communication and media technologies are all neglected in the country.
The working group on accessibility and communication has highlighted the need for
supporting an assistive technology system that meets the individual needs of disabled
people and their families as inseparable parts of communication strategy on disability. An
Information system taking into account the needs of people with all types of disability is
important, including support in the election process.
Issues and challenges
Despite the total lack of data on accessibility in post war Afghanistan, it is rather obvious
to note the inaccessible [1] physical environment in the country. This is clearly evident
throughout public services, as well as in the transportation system notably the road
network, and the present information and communication system. Lack of accessibility
services is not only restricted to people with physical disability but extends to all disabled
people including deaf, blind and people with intellectual impairments.
Essential services for example such as education are not accessible and this keeps many
disabled children out of schools as pointed out in the findings of the GVC study in Kabul.
Health and employment services are little better. The Ministry of Martyrs and Disabled is
trying to extend its reach to cover the needs of disabled people and promote accessibility
standards in society. This Ministry has recently increased the level of accessibility in its
central offices including services for deaf and blind people. However such services
remained limited and civil servants lack sufficient training.
The fact that 80% of Afghanistan is rural areas with often difficult terrain means that
environmental modifications may be difficult to make especially in remote settings. At
the same time, this also means that other local accessibility solutions could be found and
utilized. CBR workers for example find it difficult to reach disabled children in remote
villages. Those children often need specialized services in a nearby centre but transport
prevents them from receiving the services. To overcome this problem, the use of donkeys
as a local mean of transport could be a good solution (Coleridge, 2002).
The geopolitical make up of the country may have also contributed to the man made
inaccessible environment. Historically the majority population had sought after water
reserves and became clustered in communities around rivers and valleys. Many houses
therefore were built on high places to avoid floods and this meant having steps in the
architectural design of housing and buildings including markets and public buildings.
Overall, coordination is notably needed for future action concerning access and
accessibility in Afghanistan with government leading the process. The Comprehensive
National Disability Policy sets out clear guidelines including key actions necessary for a
future strategy on accessibility in Afghanistan.
Future planning
To date there is no information available on accessibility issues in Afghanistan. Donors
and the majority partners believe this to be of a low priority issue for investigation and
intervention. Even the discussion with majority representatives of the disabled
community showed accessibility as less important issue to disabled people compared
with education, training, and employment.
However, the working group on accessibility and communication in the course of
planning the national disability policy has reached a consensus on this issue and
identified the need for making society accessible for disabled Afghans as fundamental to
their inclusion and independent living. They proposed an awareness strategy that
highlights the needs and rights of disabled people as well as societal barriers that prevent
access to those services and provisions. This group recognized the need for developing
training programs and guidelines on accessibility to be used by various parties including
policy makers and professionals and recognized the need for research and needs
assessments as starting point in planning accessibility issues.
Hence, it is important to conduct research into the existing level of accessibility and
identify barriers and gaps for improvement. The MMD survey on disabled people which
started since 2002 adds no value to the issue of access and accessibility and there are no
other studies on accessibility in the country. A proper survey concerning accessibility
should be developed and carried out.
To get insights into the accessibility of disabled people through research, the existing
provisions should be highlighted and identified. Sometimes only simple and local
modifications are all that is needed to make environment accessible or communication
system accommodating. Even the introduction of new provisions can cost less if taken
from the beginning at the design level.
There are a number of issues that can be explored when researching accessibility. For
example, the inclusion of disabled people in policy planning at local, regional, and
national levels; issues relating to inclusion of disabled people in their everyday activities
such as functional tasks of getting around the house, outside mobility etc.; specialist
support to disabled people within public provisions (sign interpretation for deaf people,
Braille support, etc); technical expertise in building standards etc (modified to local
standards) and other issues.
Standard accessibility provisions include those for public use [2] such as education,
transport, employment, etc as well as provisions for private use [3] such as home
adaptation, car adaptation etc. In all standard accessibility provisions, communication and
information system is fundamental. However, policies [4] can also be inaccessible and
disabling - such policies should also be identified and rectified. This later aspect is being
ensured in the new convention together with recognition of the role of the states in
adopting measures to remove obstacles to participation in the physical environment.
References
BMF (2003) Biwako Millennium Framework for Action Towards an Inclusive, Barries
Free and Rights Based Society for Persons with Disabilities in Asia and the Pacific
(BMF). United Nations Economic and Social Council, Otsu City, Shiga, Japan.
Civic Voluntary Group (2003) The Situation of Disabled Children in the Education
System in Afghanistan: a study for the city of Kabul. Kabul: GVC.
Coleridge, P. (2002), ‘Community Based Rehabilitation in a Complex Emergency: Study
of Afghanistan', in M. Thomas, and M.J. Thomas (eds), Selected Readings in CBR Series 2: Disability and Rehabilitation Issues in South Asia, National Printing Press,
Bangalore, pp. 35-49.
Ministry of Public Health (2003) A basic package of health services for Afghanistan.
MMD (2003) The Comprehensive National Disability Policy. URL:
www.disabilityafghanistan.org
Rapley, C (2003) Reconsidering the disability Dimension in Development Cooperation
Activities; building national capacities for full participation and equality. Regional
Workshop towards a Comprehensive and Integral International Convention on Protection
and Promotion of the Rights and Dignity of Persons with Disabilities. October 14-17,
UNESCAP, Bangkok.
UN (1994), The Standard Roles on the Equalisation of Opportunities for Persons With
Disabilities, United Nations, New York.
UNESCAP (2003) Draft International Convention on the Rights of Persons with
Disabilities. URL: www.unescap.org.
United Nations (1982) The World Programme of Action concerning Disabled Persons
was adopted by the United Nations General Assembly at its thirty-seventh session on 3
December 1982 by its resolution 37/52.
Notes
[1] A practical example of this situation is seen in the work of the Task Force on
Disability. When the Task Force started its meetings it was extremely difficult to find a
venue with decent accessibility standards. When the room was found there were no
accessible toilets.
[2] Provision for public use may include transport (streets, bus, airport, and parking
places, etc); schools (accessible building, equipped classes,); public toilets; parks, rest
places, public phones, etc; cultural and recreational places (theatre, sports centres etc);
hospitals, medical centres, etc; public building where services are provided such as
ministries, UN buildings, INGO's, local admin, police department, etc; market place, such
as banks, barber shops, etc; religious places, such as mosque, etc; workplaces, vocational
training etc; and others
[3] Provision for private use may include adapted home, kitchen, toilet, etc; adapted car,
parking places, pavement, easy signs and directions; problems with existing provisions
such as they don't know about them, they are not sufficient, they don't meet their
particular needs, etc; aspirations and needs
[4] Policies could be verified in terms of the kinds of existing legislations, local
regulations and International statements; policies to include disabled people and disability
issues at the local agenda; technical code of practice re building standards etc; system for
communicating information on accessibility to disabled people; system to coordinate
such info with other partners and users, etc; policy to justify, explain and relate
provisions in accessibility to the life of disabled people. For example how accessible
transport and education system can increase disabled people's chances for employment
etc.; policies that encourage a human rights approach; problems with existing provisions;
aspirations and needs.
Hong Kong: becoming an accessible destination (and
list of travel websites)
By Mabel Chau (mchau@rehabsociety.org.hk) and Barbara Kolucki
"Go Freely!" shouts the slogan. We want everyone, including people with disabilities,
chronic illness and the elderly to:
• Visit The Big Buddha
• Sightsee on buses, ferries and trams
• Shop
• Dine
• Attend cultural performances
• Visit consular offices
• Have fun at Theme Parks
Governments and industries around the world are beginning to realize that in addition to
being a human rights issue, there is a large untapped potential market in accessible
tourism. A study in 2003 of people with disabilities in Hong Kong indicated that
accessible transport was one of their top priorities. In 2003, more than 300,000 people
required the use of a wheelchair getting through Hong Kong's Chap Lap Kok
International Airport. Travelers with disability also indicated safety, health concerns and
lack of knowledge as other reasons curtailing their willingness to travel.
Hong Kong is one of the most exciting cities in the world to visit. It is a combination of
old and new cultures, the best international cuisine, magical alleys of everything from
herbs to antiques as well as modern shopping centers.
Easy Access Travel Limited (EAT) was launched in 2003 to provide "professional all-inone travel services aiming to promote Hong Kong as an accessible international city." It
is a subsidiary of the Hong Kong Society for Rehabilitation (HKSR), an organization
providing landmark services and support to people with disabilities in Hong Kong and a
WHO Collaborating Center in Rehabilitation in the Asia and Pacific Region. HKSR has
been a forerunner in providing training in community based rehabilitation in China,
launched more than 15 years ago.
Prior to the launch of EAT, HKSR conducted a study of over 800 facilities in Hong Kong
including hotels, restaurants, consular offices, and key sightseeing and performance
venues. The Guide to Visitors with Disabilities to Hong Kong was first published in 1982
and updated periodically. A new 2004 Guide will shortly be launched - and will also be
accessible through the Internet. It will include transport information, including the degree
of accessibility on various forms of public transport, like Mass Transit Railroad, buses,
rail, ferries, airport, taxis, mini-buses, trams - as well as the specially adapted and
accessible Rehabus and Easy Access Bus.
Regarding access in hotels and other accommodations, in 1997 the Hong Kong building
code was revised to include that "for every 100 hotel rooms, 2 rooms must be accessible
for people with disability".
Currently, major tourist attractions such as Theme Parks (including plans for Disneyland
2005/6) are accessible. Work still has to be done to achieve this same success for some of
the most special cultural attractions, especially smaller temples and the famous streets
and alleys of Hong Kong.
Support from Government
The Hong Kong Special Administrative Region (SAR) Government has recognized that
this is an untapped market. The new Disneyland that is due to open in 2005/06 is going to
be accessible to people with disabilities. And indeed, one of the best incentives for the
Chinese government is the fact that Beijing, China has been selected as the venue for the
2008 Olympic Games, Paralympics, Deaflympic and Special Olympic China Games.
Current challenges and new issues
There are still several problems and issues that need to be worked out to ensure that
accessible tourism can be anchored politically and developed properly. Many tour
operators are small, catering for travelers both inbound and outbound. Access to other
operators is one among numerous issues they must deal with - and until recently, they
have not been well connected, either with groups like the HKSR or with agencies
catering to people with disabilities. There are also major tourism players that simply are
not yet interested - and continued advocacy with these groups is crucial.
Groups of travelers who are disabled also face practical concerns including the small
number of rooms in a given hotel, small number of accessible seats for people with
wheelchairs on a given transport or venue and lack of accessible toilet facilities.
At the present time, EAT has made the greatest progress in the area of access for people
with physical disability. Currently, the latest number of both tourists and Hong Kong
citizens requiring these services are those who are physically disabled. And Hong Kong
has traditionally had greater experience and local expertise in physical access
innovations. However, access for people with visual and hearing impairments is equally
important and will be given greater attention. At present, only a small number of hotels
and museums cater to people with visual impairments. The new "Disney" hotels and parts
will provide access and services for those with physical, hearing and visual disabilities.
And finally, the cost of accessible tourism continues to be a hindrance for many. Options
for people traveling with attendants and the cost-benefits to tour operators need to be
addressed in creative and forthright ways. Networking among various agencies, referral
of clients to each other and business collaboration are all being pursued as ways to build
up and support this market.
Anyone who has visited Hong Kong can tell you about its uniqueness. It has traditionally
been one of the most difficult cities for a person, especially with a physical disability.
Easy Access Travel Limited wants to change that - for citizens of Hong Kong and those
from other parts of the world. In 2003 Hong Kong welcomed nearly 16 million travelers.
If even 10% were disabled, that would mean that 1.6 million people could enjoy this city,
bring income to this city - and GO FREELY!
Mabel Chau is the CEO of Easy-Access Travel Ltd. and the Executive Director of the
Hong Kong Society for Rehabilitation. Barbara Kolucki is a frequent contributor to
disabilityworld.org. Both authors would like to thank Annie Kwok and Allen Chiu of the
Hong Kong Society for Rehabilitation for their assistance with this article.
For information regarding Easy-Access Travel Ltd. contact:
Ms. Gloria HA
Address: G/F, HKSR, Lam Tin Complex
7 Rehab Path
Lam Tin
Hong Kong
Service Hotline Fax: 852 2772 7301
Email: enquiry@easyaccesstravelhk.com
www.easyaccesstravelhk.com
List of Selected Websites and Companies on Accessible Tourism:
 Disabled Travels: Provides respite care for people with people with physical and
learning disabilities and receives enquiries from worldwide from people looking for
special needs hotel accommodation. www.disabledtravels.com
 Global Access: Provides information & newsletter about accessible hotels, resorts
and disability links to numerous countries. www.Geocities.com/paris/1502
 Disability Travel: provides newsletter, Accessible Journeys; advice, references and
connections since 1985: www.disability-travel.com
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Accessible Holiday Home Exchange: A service run by people with disabilities
where customers can swap homes with other people with similar needs in other parts
of the world. www.independentliving.org/vacaswap.html
World Travel Care Companions Inc.: Offers knowledgeable support and
assistance as needed for international travel. www.travelcompanions.com
Trips Inc. Special Adventure: Provides travel outings designed for people with
developmental disabilities. www.tripsinc.com
Wheelsup: Specializes in planning and arranging travel for people in wheelchairs
and other with limited mobility. Recommends specific hotel room and cruise ship
cabin accommodations and well as arranges special handling on airlines, car rentals
with hand controls, resorts with special beach-ready wheelchairs.
www.wheelsup.com
People and Places: Provides year-round, small group travel, vacation and respite
opportunities for people with mental retardation and other developmental disabilities.
www.people-and-places.org
Wings on wheels: Specializes in arranging U.K., European and Worldwide
vacations for disabled people, their carers/attendants, relatives and friends.
www.wingsonwheels.co.uk
The Society for Accessible Travel and Hospitality: active since 1976, provides
access audits of hotels, restaurants and attractions and answers media requests on
disability travel. www.sath.org
Abletogo.com: Provides information with details on type of accommodation, places
of interest and accessible premises. www.abletogo.com
Flying Wheels Travel: Escorted tours outside the USA mainly to Europe and the
Middle East. www.flyingwheelstravel.com
Vacation Care International: Offers a range of professional companion and
nursing care and other services during vacation including medical supply pick-up,
exercises, Alzheimer's Care, Intermediate Care, etc.
www.vacationcareinternational.com
Medical Travel, Inc. : Arranges cruises and land vacations for Dialysis Patients,
Patients with Respiratory Problems, arrangements for scooter and wheelchair rentals,
oxygen rentals, lift rentals as well as arrange travel insurance for travelers with preexisting medical disabilities. www.medicaltravel.org
Cape Tours and Adventure: Organizes special holidays/vacations conducted by
qualified tour guides in Capetown, South Africa who are fluent in sign language.
www.caperocktours.com
Costa Rica Deaf Travel Corporation: Includes trips for deaf and hard-of-hearing
groups as well as individuals who are deaf. www.cdtcsa.com
Winged Fellowship Trust: A U.K. based charity providing holidays for disabled
and visually impaired people. www.wft.org.uk
Egypt for all: Includes tours that are accessible for people with visual impairments.
www.egyptforall.com
Rolling SA: Organizes tours to Africa for people with disabilities.
www.rollingsa.co.za
Epic-enabled: An overland tour company specializing in adventure travel in and
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around Southern Africa for people with disabilities. www.epic-enabled.com
NeverLand Adventure: Provides accessible travel to Australia and New Zealand for
travelers with disabilities. www.neverland-adventures.com
Accessible Kiwi Tours Ltd.: Includes total tour packages as well as provision of
special travel and medical needs for disabled travelers in New Zealand.
www.accessible-tours.co.nz
Accessible Italy: Arranges group and individual travel services in Italy for people
with disabilities. www.accessibleitaly.com
Adventure Holiday Thailand: Provides individually tailored tour packages for
people with a variety of disabilities. www.adventure-holiday-thailand.com
Access Tours: Provides accessible tours for people with disabilities in the American
West. www.accesstours.org
3H Fund: Organizes subsidized group holidays for physically disabled children and
adults with the support of volunteer helpers. Provides grants to families on low
income with a physically or mentally disabled dependent of the U.K.
www.3hfund.org.uk
Access California: Facilitates accessible travel in Northern California.
www.accessnca.com
Accessible Alaska Adventure: Provides services for Alaska cruises customized for
people with disabilities. www.accessiblealaska.com
Access Aloha Travel: Provides services for travel, cruising and local transportation
for people with disabilities visiting Hawaii. www.accessalohatravel.com
Global Universal Design Educators Online News
The Global Universal Design Educator's Online News is produced and published through
contracts with the Center for Universal Design at North Carolina State University and
Adaptive Environments, Boston, MA, in cooperation with the National Institute on
Disability and Rehabilitation Research.
August 31-September 3, 2004: CBR (Community Based Rehabilitation) Africa
Network Conference 'CBR as Part Of Community Development.' Conference
sponsored by the CBR Africa Network (CAN). CBR Africa Network is a nongovernment organization, of which the secretariat is based at the Ugandan National
Institute of Special Education. CAN was established in 2001 following resolutions made
at the previous CBR Africa Regional Conference, 'CBR as a participatory strategy in
Africa.' CAN aims to facilitate the sharing of information about community-based
services for persons with disabilities and their families in African countries. See:
http://www.disabilityworld.org/11-12_03/news/cbrafrica.shtml
September 3, 2004: The Shinkenchiku Residential Design Competition 2004. Theme:
House of Multiple Dimensions. See: http://www.japanarchitect.co.jp/english/5info/topics/sk2004.html
September 5 – 8, 2004: 7th IFA Global Conference on Ageing, titled 'Global Ageing:
Sustaining Development' organized by: International Federation on Ageing (IFA) &
The Singapore Action Group of Elders (SAGE), in Singapore. A forum for debates on
ageing issues, an opportunity for consumers, practitioners and policymakers in the field
of ageing to exchange knowledge and information, as well as establish and strengthen
friendships and partnerships. This forum is an important occasion to also learn about the
impact of ageing policies and programs since the United Nations Second World
Assembly on Ageing in 2002 and finalization of The International Plan of Action.
Models of leading practice will also be highlighted. See: http://www.7ifaconference.com
September 6-9, 2004: 'HCI2004, The 18th British HCI Group Annual Conference'
Leeds, UK, sponsored by the British HCI Group. Join researchers, practitioners and
educators from around the world at HCI2004 where we will be exploring the theme of
Design for Life. As designers, evaluators and implementers of interactive systems we
have great responsibility. The systems we design impact upon the lives of the people who
use them - for good or ill. See: http://www.bcs-hci.org.uk/hci2004/
September 7-9, 2004: 'Ageing Societies and Ageing Sociology: Diversity and Change
in a Global World' sponsored by ISA Research Committee on Sociology of Aging,
RC11, Inter-Congress Conference, Roehampton, UK. Ageing societies are a historically
unique and global phenomenon, which calls for intensified scientific research into the
consequences of this worldwide development in the years to come: What will ageing
societies look like? In which regards will they differ from contemporary societies? How
does ageing affect social institutions and social structures? What are the implications of
ageing societies in different regional, national, and international contexts? See:
http://www.soc.surrey.ac.uk/crag/ISA2004/
September 8-10, 2004: 'DPI World Summit 2004: Diversity Within,' Winnipeg,
Manitoba, Canada, sponsored by Disabled Peoples' International. DPI's World Summit
will be an opportunity for national assemblies, disability organizations, NGOs,
international development agencies, as well as local and national goods and services
providers in the disability field to discuss and share information. The purpose of the
Summit is to pursue the issues identified at the DPI 6th World Assembly in Sapporo,
Japan, to address the issue of diversity, and to prepare for the next World Assembly in
South Africa in 2006. See: http://www.dpi.org/en/events/world_summit/06-2303_summit2004.htm
September 15, 2004: Entry deadlines for the 'Design for All Awards' and the
'Assistive Technology Awards' sponsored by the European Commission. To qualify for
the Design for All awards, we are seeking entries from designers, engineers, design
students and companies. Each entry will be judged according to Accessibility, Aesthetics,
Appropriateness, Availability, Awareness, Affordability and Advancement. To qualify
for the Assistive Technology Awards, we are seeking applications from industry,
research and development companies, institutes, design professionals, innovators and
design students. Entries will be judged as for the Design for All awards. See:
http://www.dfa-at- awards.org/home/index.cfm
September 20-22, 2004: '5th National NICAN Conference, Out of the Blue: Valuing
the Disability Market in Tourism' Perth, Australia. The Conference will concentrate
on making Tourism more inclusive for people with disabilities. At the same time it will
present an excellent opportunity for tourism and recreation groups to virtually discover an
untapped market. The conference is working on the premise that people with disabilities
often find themselves as visitors, sitting on the 'perimeter' of the venue they visit, due to
difficult access or lack of information and support options. The Conference aims to open
up explorative discussion and develop actions to break down some of the inhibitive
barriers preventing maximum participation in tourism experiences. See:
http://www.nican.com.au/education/conference.shtml
September 28-October 2, 2004: '2nd Symposium on International Issues in
Engineering Design (IIED) as part of the 2004 IDETC (International Design
Engineering Technical Conference),' Salt Lake City, Utah, sponsored by the
International Activities Committee of the Design Engineering Division. The three major
overall conference categories are: pan-world collaborative design, management of panworld project design teams, and international drivers and practice for product life cycle
with one focus area being 'Design for the elderly and physically challenged.' See:
http://www.detc2004.me.byu.edu/conferences.htm
September 30, 2004: Submission deadline for Include 2005 to be held April 5-8,
2005, Royal College of Art, UK. Inclusive design is a process whereby designers and
manufacturers ensure that their products and services address the needs of the widest
possible audience. Don't miss this opportunity to discuss your work on inclusive design at
one of the key research and design business conferences of 2005, adding to the cuttingedge approaches, case studies and real world achievements described at Include 2001 and
2003. For the call, see: http://www.hhrc.rca.ac.uk/programmes/include/2005/call.html
September 30, 2004: Nominations due for The Nordic Design for All honor 2004.
The Nordic Design for All honor is a new prize awarded by the Nordic Council on
Disability Policy and based on nominations from Scandinavian organizations for the
disabled. The theme of the 2004 honor is the products and services of the IT society. The
focus on placed on good examples of the application of Design for All solutions to
general products, services and systems. These solutions shall function in practice, be
user-friendly from a Design for All perspective, and fulfill people's needs in such areas as
work, education, travel, leisure, and other everyday matters. The product, service or
system shall be produced or provided within Scandinavia, but may be targeted at an
international, national, regional or local market. For details, see:
http://www.nsh.se/in_english/for_all_no1_Spring2004.htm
September 30, 2004: Submission deadline for the 'Access All Area Awards,' UK. The
Access All Areas Awards recognize small and medium sized enterprises that have made
their services accessible to disabled people in innovative and creative ways. The Awards
are run by the Department for Work and Pensions and supported by Vodafone. The
closing date for this year's entries is 30 September 2004. The web site includes
information about last year's award winners. For more information, see:
http://www.disability.gov.uk/dda/awards/
October 1, 2004: Deadline to participate in Georgia Tech Survey on Universal
Design of Consumer-oriented Products. Georgia Tech Research Institute (GTRI) is
conducting a survey for a research project that is designed to address the universal design
of consumer-oriented products. The goal of the survey is to measure user perceptions of
attempts at building accessibility features into products such as ATMs, cell phones,
personal digital assistants (PDAs), on-line training software, distance learning software,
voice recognition technologies, and televisions. Respondent's answers will assist us in
judging the impact of efforts of the Federal Government to promote accessible design
practices. The call for participation is at:
http://www.ncbvi.state.ne.us/callforparticipation.htm and it includes information on how
to request a paper copy of the survey. To access the on-line survey directly, visit:
http://aef.gtri.gatech.edu/universal_design.html
October 1, 2004: Submission deadline for EDRA 36, 'Design for Diversity.' The
Environmental Design Research Association (EDRA) is an international multidisciplinary organization of designers, researchers, educators, and other professionals
involved in the design and management of the physical environment. Our mission is to
advance and disseminate knowledge of the relationship between people and their
surroundings, thereby promoting the creation of environments responsive to human needs
on many levels. EDRA 36 will take place April 27-May 1, 2005, Vancouver, Canada.
The conference theme, Design for Diversity, is a celebration of diversity in race, gender,
age, abilities, class and ideology in the context of environmental planning and design. It
invites presentations, discussions and debates on issues, concerns, paradigms and
challenges for the planning and design of multicultural cities. For submission details, see:
http://www.edra.org/conference/pdfs/EDRA36CFP(7).pdf
October 4-7, 2004: NCA Training Course: Retrofitting for Accessibility
Yellowstone, MT. This course provides education on federal legislations and
accessibility requirements as applied to park and recreation facilities and programs.
Curriculum emphasis will include application of accessibility standards, barrier removal,
safety issues associated with accessibility, and ongoing facility maintenance to assure
optimum access for visitors including those with disabilities. Participants will learn how
to identify barriers and initiate appropriate solutions for facility renovations beneficial to
user groups of all abilities. For more info, see:
http://www.ncaonline.org/training/retrofit04.shtml
October 6-8, 2004: New Design Cities, Montreal, Canada. Founded on the assumption
that design is an activity involving conception, creation, planning and management that
shapes the quality of our environment and contributes to the competitiveness of our
economy and the cultural expression of our country, our region, our city and our
businesses, this symposium aims to discuss cities' different positioning and development
strategies based on design, and then to assess their impact.. For more information see:
http://www2.ville.montreal.qc.ca/colloquedesign/index_eng.shtm
October 20-22, 2004: Child in the City Conference, London, UK, organized by The
Child in the City Foundation in association with the National Children's Bureau. The
purpose of this two-and-a-half day international conference is to bring together social
scientists, policy makers, planners and practitioners to share current thinking and
disseminate good practice on one of the most pressing challenges facing urban
governments: integrating the play and recreational needs of children within the planning,
design and governance of the modern city. See: http://www.europointbv.com/events/?child2004
October 23-26, 2004: White House Conference on Aging, Washington, DC. This is
the first White House Conference on Aging of the 21st Century. The Policy Committee
Chair Dorcas R. Hardy urged the Committee to look at aging in terms of today and
tomorrow. The Policy Committee, required by the Older Americans Act Amendments of
2000, which authorized the 2005 White House Conference on Aging, is responsible for
the planning and implementation of the 2005 Conference. The White House Conference
on Aging occurs once a decade in order to make policy recommendations to the President
and Congress to assist the public and private sectors in promoting the dignity, health,
independence, and economic security of current and future generations of older persons.
For several documents about the Conference, please see:
http://www.aoa.gov/press/conference_on_aging/conf_on_aging.asp
October 25-28, 2004: American Association for Homes and Services for the Aging
(AAHSA) Annual Meeting and Exposition, Nashville, TN. AAHSA is committed to
advancing the vision of healthy, affordable, ethical aging services for America. The
association represents 5,600 mission-driven, not-for-profit nursing homes, continuing
care retirement communities, assisted living and senior housing facilities, and community
service organizations. Our members serve more than two million older persons across the
country. For full annual meeting details, see: http://am2004.expoexchange.com/
October 27-29, 2004: Open Space: People Space: An International Conference on
Inclusive Environments, Edinburgh, Scotland, sponsored by OPENspace: the research
centre for inclusive access to outdoor environments is hosting a three- day conference in
Edinburgh to review recent research and debate current issues surrounding good design
for open space and social inclusion, spaces and places for the 21st century. The program
will include contributions from an international array of experts covering the major
themes of the conference: children and young people; disability and social inclusion;
health and restorative environments and tourism and leisure. See:
http://www.openspace.eca.ac.uk
November 1, 2004: Deadline for submission of full papers for the environmental
health issue of Children, Youth and Environments (CYE). CYE's environmental
health issue will feature articles from researchers around the world who are investigating
the conditions in which children live and the impacts of specific hazards and toxins in
their environments, such as indoor air quality in homes and schools, lead poisoning and
remediation, outdoor environment access and safety, water quality and safety, sanitation
issues, and other environmental concerns. See:
http://cye.colorado.edu/CYE_SubmissionGuidelines.htm
November 5, 2004: Deadline for PVA's Barrier-Free America Award. Annually, the
Paralyzed Veterans of America (PVA) honors an individual for their outstanding
contribution toward a barrier-free environment. The annual presentation of the BarrierFree America Award is a chance to recognize an individual for his/her sensitivity to the
importance of accessible design, as well as the difference this individual has made
through a particular project in achieving a barrier- free environment. For information on
past award winners and the submission procedures for the 2005 Award, see:
http://www.pva.org/livingsci/architecture/bfa.htm
November 9-12, 2004: 7th Annual Accessing Higher Ground Conference: Assistive
Technology and Accessible Media in Higher Education, Boulder, CO. Accessing
Higher Ground focuses on the implementation and benefits of Assistive Technology in
the university and college setting for sensory, physical and learning disabilities. Other
topics include legal and policy issues, including ADA and 508 compliance, and making
campus media and information resources - including Web pages and library resources accessible. For conference registration and general information, visit:
http://www.colorado.edu/ATconference
November 16-18, 2004: Build Boston, Boston, MA. Build Boston brings together the
leading suppliers of building products and services all under one roof exhibiting and
demonstrating their newest products for your inspection and an array of workshops and
seminars. The 'Universal Design' track includes such topics as: Listening for learning new standards for classroom acoustics, Invoking `equivalent facilitation` in accessible
design, Housing for elders: design trends and user preferences, Playground safety, ADA
and character education, Evacuating disabled people: training and programmatic issues,
Safety and aesthetics in the design of stairways and handrails and ADA Updates `04 -the revised ADA Accessibility Guidelines. For more information, see:
http://www.buildboston.com/
November 17-21, 2004: Design Research Society International Conference, Monash
University, Melbourne. The theme is 'FUTUREGROUND', and will feature leading
edge design research from the international research community. Supporting the central
theme will be discourse around design as both cultural activity and production; mapping
the discipline's development; and research in an industrial context. Particular emphasis
will be on the opportunities this presents for reconsidering the nature of design and an
exploration of the scope for future research. See:
http://www.futureground.monash.edu.au
December 5, 2004: Deadline for The Dyson/IDSA an Eye for Why Design &
Engineering Competition. Dyson, Inc. and IDSA have teamed up to challenge industrial
design students to create an innovative household product that reflects Dyson's
philosophy and commitment to intelligent, function-first design and will be designed to
work better by solving a problem. See:
http://new.idsa.org/webmodules/articles/anmviewer.asp?a=921&z=31
December 7-12, 2004: 'Designing for the 21st Century III: An International
Conference on Universal Design,' Rio de Janeiro, Brazil. Adaptive Environments is
primary Host, Centro de Vida Independente do Rio de Janeiro (CVI-Rio), the first
independent living center in Latin America, is Host Partner and Co- Sponsors are NEC
Foundation of America, the United Nations Global Programme on Disability and the
Universal Design Consortium (Japan). Metropolis magazine is Media Sponsor. This is an
extraordinary moment. We are more diverse now in ability and age than ever before. It is
time for design to catch up. There is an urgent need to exchange ideas about the design of
places, things, information, policies and programs that demonstrate the power of design
to shape a 21st century world that works for all of us. Whatever you call it - universal
design, inclusive design, design-for-all, lifespan design - the worldwide movement for
human centered design with everyone in mind is gaining momentum. The Designing for
the 21st Century III Conference is fueled by that momentum and will offer a platform for
the next stage of development. The conference includes a student design competition,
charettes within Rio de Janeiro and an Educator's Forum. See:
http://www.designfor21st.org/
December 15, 2004: Deadline for C2C Home design and construction competition.
Design will lead to actual construction. And homes will be built with a goal of achieving
the new standards of sustainability set up in Cradle to Cradle: Remaking the Way We
Make Things. See: http://www.c2c-home.org/
December 31, 2004: Deadline for submissions to the 18th World Congress of
Gerontology, to be held June 26-27 2005, Rio de Janeiro, Brazil. Aging is a major
challenge for the 21st century. Not only will retirement policies have to find an
innovative structure to accomplish their purpose, but the society will also have to deal
with new and difficult demands in the field of health, psychosocial and economic factors.
The role of Gerontology will increase not only to answer the new questions regarding the
aged, but implement alternatives already available. See:
http://www.gerontology2005.org.br/
March 10-13, 2005: The Changing Face of Aging: 5th Joint Conference of the
American Society and the National Council on Aging, Philadelphia, Pennsylvania,
USA. As current social, political, and economic forces intersect a burgeoning medical
and technological revolution, what will the face of aging look like? In the spirit of 1776,
the conference will examine the themes of independence, choice, evolution and
revolution in light of this diversity. What will independence mean? Who will make the
choices? How can we, in the midst of this transformation of society, redefine aging,
increase consumer choice, expand services and programs, create opportunities for growth
and engagement in later life, and hold fast to our inalienable human rights? See:
http://www.agingconference.org/jc05/theme.cfm
April 5-8, 2005: INCLUDE 2005, London, UK. Inclusive design is a process whereby
designers and manufacturers ensure that their products and services address the needs of
the widest possible audience. Don't miss this opportunity to discuss your work on
inclusive design at one of the key research and design business conferences of 2005,
adding to the cutting-edge approaches, case studies and real world achievements
described at Include 2001 and 2003. See:
http://www.hhrc.rca.ac.uk/programmes/include/2005/call.html
May 17-19, 2005: National DBTAC ADA Symposium: The Annual Conference on
Disability Issues, Kansas City, KS. The National ADA Symposium is the most
comprehensive training event available on the Americans with Disabilities Act and
related disability issues including accessible information technology. The ADA
Symposium brings together nationally recognized experts in their fields to conduct
dynamic, interactive trainings in a relaxed environment that encourages networking and
group problem-solving. Learn more about this comprehensive conference on the ADA
and disability-related issues at http://www.adaupdate.org/Symposium.html
May 24-25, 2005: The 5th Conference of the International Society for
Gerontechnology - Gerontechnology 2005, Nagoya, Japan. This conference held about
every 3 years will focus on the following topics: Health & Self-esteem, Housing & Daily
Living, Mobility & transport, Communication & Governance, Work Condition & Work
Ability, Geriatrics & Dementia Cares, Leisure, Robotics for Human Support, Universal
Design and Standards for the elderly & disabled people. See:
http://www2.convention.co.jp/5isg/english/
July 22-27 2005: HCI International 2005, including: 11th International Conference on
Human-Computer Interaction jointly with Symposium on Human Interface (Japan) 2005,
6th International Conference on Engineering Psychology and Cognitive Ergonomics, 3rd
International Conference on Universal Access in Human-Computer Interaction, 1st
International Conference on Virtual Reality, and 1st International Conference on
Usability and Internationalization, Las Vegas, Nevada, USA. The conference objective is
to provide an international forum for the dissemination and exchange of scientific
information on theoretical, generic, and applied areas of HCI, usability,
internationalization, virtual reality, universal access and cognitive ergonomics. See:
http://www.hci- international.org/
November 16-18 2005: World Summit on the Information Society. Tunis, Tunisia.
The first phase of WSIS took place in Geneva and the second phase will take place in
Tunis. A fundamental change from an industrial to information-based society is taking
place. This information revolution affects the way people live, learn and work and how
governments interact with civil society. Information is a powerful tool for economic and
social development and this Summit will provide a unique opportunity for all key players
to contribute actively to bridge the digital and knowledge divides. Development themes
will be a key focus in the second phase in Tunisia and it will assess progress that has been
made and adopt any further Action Plan to be taken. See: http://www.itu.int/wsis/
May 30-June 2 2006: IFA 8th Global Conference on Aging, Copenhagen, Denmark.
The Copenhagen conference aims to highlight cross-cultural co-operation to meet the
challenges of global aging, and at the same time address important region- specific issues
of ageing. The conference will be built up around the following themes and dimensions:
The Economics of Aging, The Challenges of Aging, Active Aging - Aging Well, and
Empowerment – participation. See: http://www.global- ageing.dk/
Costa Rica: The Struggle for Accessible Public
Transportation Finally Yields Results
By Luis Fernando Astorga Gatjens (lferag@racsa.co.cr)
On May 13, 2004, the first 150 adapted buses for persons with disabilities rolled onto the
streets, an example of concrete implementation of Law 7600, Costa Rican Equal
Opportunities Law for Persons with Disabilities, pending fulfillment by the transportation
companies of Costa Rica.
The introduction of adapted buses is part of an agreement negotiated in year 2003, by a
group of organizations of persons with disabilities, the transportation companies (Foro
Nacional de Transporte) and the Costa Rican Council of Rehabilitation and Special
Education (Consejo Nacional de Rehabilitación y Educación Especial, CNREE), the
government agency responsible for disability issues.
This agreement includes the introduction of buses with hydraulic ramps or platforms and
other accommodations to improve public transportation of the country. These
improvements benefit persons with disabilities and people having restricted mobility.
The announcement was made on May 13, with extensive media coverage. The new buses
began to circulate immediately at the official inauguration act with President of Costa
Rica, Dr. Abel Pacheco and the Minister of Public Works and Transportation, Javier
Chávez.
The judicial obligation to provide accessible public transportation
The Law No. 7600 establishes via its article 45, that the Costa Rican State is responsible
for providing accessible transportation to all. The article 46 of this law established that
the transportation authorities are to cancel the concessions or permits to the providers of
public transportation that fail to provide accessibility, pursuant to this Law and its by law,
article 165. Here in Costa Rica, public transportation is the responsibility of the State and,
it is provided by private companies that need a concession or an official permit to
operate, always under government supervision.
The Law 7600 had established that there would be a period of seven years, beginning
May 29, 1996, at the end of which for all buses should be accessible:
"TRANSITORY VI. The Ministry of Public Works and Transportation shall initiate,
immediately and with the existing resources, measures to comply with the obligations
established by the present law. Said compliance measures must be completed within a
period not exceeding a seven year period." (Law 7600)
Though there has been reiterated non-compliance of the pertinent dispositions and though
the term for full accessibility had become due for the transportation providers, the
administration of President Pacheco did not cancel any concession or revoke any
transportation permit, which he had the power to do as a way of prompting the
accessibility and security for all.
Because of this situation, the transportation issue had become a top priority for persons
with disabilities, being at the top of the social and political struggle.
The key role of civil society organizations
Though they took too long, the effort by the transportation companies of purchasing
accessible buses deserves recognition. It means progress toward accessibility and the
rights of person with disabilities. Disabilities leaders mentioned that media coverage by
the Costa Rican Rehabilitation Council and other sources, omitted that there had been a
long social struggle on the part of national disability groups.
The following are some concrete actions undertaken by national disability groups,
including the Costa Rican Forum on Human Rights of Persons with Disabilities (Foro por
los Derechos Humanos de las Personas con Discapacidad) and the Network of Sheltered
Workshops:
On Friday December 1, 2000, five persons with disabilities, belonging to the Costa Rican
Forum for Human Rights of Persons with Disabilities, filed a writ at the Costa Rican
Constitutional Court seeking constitutional guarantees for protection of human rights,
against the Ministry of Public Works and Transportations. These persons posited that the
government agency, responsible for public transportation was not demanding the
transportation companies and their affiliates to duly comply with the law, specifically
with respect to guaranteeing that persons with disabilities should be accorded accessible
transportation in order to enjoy freedom of movement. On March 10, 2001, the
petitioners were notified of a negative resolution of the Constitutional Court. Therefore,
national remedies were exhausted with respect to guaranteeing the freedom of movement
and the right to accessible transportation for all.
-On June 1, 2001, celebrating the fifth anniversary of the approval of Law 7600, 2000
persons with disabilities, families and supporters hit the streets of San Jose, with a
"March for Equal Opportunities". This event, organized by the Costa Rican Forum and
the Network of Sheltered Workshops, emphasized our need for accessible public
transportation and then we presented our Open Letter to Costa Rica, which was handed to
the President of the Costa Rican Legislation.
-On September 10, 2001, five persons of the Costa Rican Forum for Human Rights of
Person, after not receiving the corresponding remedies for the Costa Rican Constitution
Court, filed a demand at the Inter American Commission on Human Rights, stating that
that as a State, Costa Rica was not providing accessibility to public transportation for all
persons and, therefore, it was permitting restrictions to the freedom of movement for
persons with disabilities. This petition is being supported by the Center for Justice and
International Law, in the capacity of legal advisers. The petition is moving forward
according to the procedural stages of the process.
-At an initiative of the Costa Rican Forum for Human Rights of Persons with Disabilities,
at the
March 15, 2003 General Assembly of the nongovernmental disability organizations, a
petition to be delivered to the President of the republic was approved. The text also
included specific demands for accessible public transportation..
-On May 29, 2003, as part of the celebration of the seventh anniversary of the Law 7600,
about 1000 persons with disabilities, families and friends, gathered at the Presidential
House requesting an official answer to the 10 point petition which we had presented to
the government. The seven year period to complete accessibility accommodations in
public transportation ended on that day and we felt that not much had been achieved.
During this demonstration, Vice President Lineth Saborío, Coordinator of the Social
Council of the Costa Rican government, requested the establishment of a commission to
began the negotiation process, which subsequently proved to be productive. The
Commission was formed by three persons with disabilities, one parent of a person with
disabilities and representatives of the corresponding Ministries of the Government and
Executive Authorities.
-There were also meetings with Karla González, Vice Minister of Transportation, the
National Transportation Forum, grouping the private providers of transportation and
representatives of persons with disabilities. There, after intense negotiations, the decision
to move on with the accessibility accommodation and the acquisition of the 150
accessible buses was made.
Non-conformity
Leaders from the Costa Rican Forum for the Human Rights of Persons with Disabilities
and from the Network of Sheltered Workshops have manifested their discontent with
respect to the way the Costa Rican Council of Rehabilitation and Special Education has
handled the information regarding this relative and late advancement in proving an
accessible public transportation. They consider that the government agency has sought to
minimize and even make invisible the fundamental role played by the organizations of
persons with disabilities. The Costa Rican Rehabilitation and Special Education has
undermined other actors, including themselves. They have contributed, but have not
developed the active role as they should.
Catalina Devandas, Vice President of the Costa Rican Forum for Human Rights of
Persons with Disabilities, told Disability World: "Citizen participation is the key to
developing a real democracy. But this participation is very difficult for us, the persons
with disabilities. We have to confront many physical and social barriers. That is why the
access to public transportation is so important and is must be a priority."
On the other hand, Francisco Villalta, who has two sons with cognitive disabilities, says
that: "The Costa Rican Council of Rehabilitation and Special Education has to contribute
to strengthen the social and political participation of persons with disabilities in their
struggle for their vindications. In current media coverage... the role played by persons
with disabilities is overshadowed. That is not the way of fostering the necessary
participation."
Deaf-Blind Japanese Gain Access to World through
Computers
By Shinichiro Kadokawa
The Deaf-Blind and IT
The deaf-blind people are those who have disabilities both in sight and hearing at the
same time. To be more concrete, we can also say that they are "people with dual
disability in sight and hearing." Since we can neither see nor hear, there is difficulty in
communicating with others. Even just getting information is a lot of trouble for these
people. For one of them, sign language is the only way of communication, while for
another, conversation is only possible by asking others to spell words slowly on his/her
palm. It is estimated that there are about 13,000 deaf-blind people all over the country.
Getting communication and information has been a very serious problem for them. Not
being able to communicate means that they cannot make good conversation with others,
which increases their stress. Besides, not being able to get information means that they
fall behind the times. To put it in an extreme way, it is like they are living in the darkness
alone, never knowing the present time or weather.
Fortunately, though gradually, these deaf-blind people have come to receive social
supports. A system has been organized to train and send "Interpreters for deaf-blind
people" to ensure their communication and information, which has enabled more deafblind people to participate in society.
In addition, personal computers (PCs) were introduced to the deaf-blind people's world
and the number of the deaf-blind who wish to learn PC so that they are not excluded from
IT society is increasing year by year. Unfortunately it is not clear how many deaf-blind
people are using PC because there is no research on the deaf-blind and their actual use of
PC. However, as lots of deaf-blind people attend the PC courses provided by our day
service center, "Smile", it seems that many of them are challenging themselves to learn to
exchange electronic mails every year,"
Since PC is very useful for the deaf-blind, it is not too much to say that PC supports them
in various aspects. Including myself, a lot of deaf-blind people using PCs now say, "I
cannot imagine my life without the PC." Thus, the PC is now indispensable for the life of
the deaf-blind. This is natural because the deaf-blind can get lots of different kinds of
information through communicating by electric mails or using the Internet. Deaf-blind
people are eager to communicate and get information.
When the deaf-blind operate PC, they first have to enlarge the letters on the screen or to
output text in Braille. Therefore, they need software to enlarge screen or Braille display
to output in Braille. Braille display is especially very expensive and it is very hard to
purchase it as an individual, because many of the deaf-blind are living on pensions.
Fortunately, the government made a new system and started a project in 1999 to provide
Braille displays for the qualified deaf-blind people. Later in 2001, the "Information
Barrier Free Supporting Project" was started and the government provided partial
financial assistance for deaf-blind individuals when they purchase necessary software
such as screen readers and other peripheral devices. However, these projects by the
government are not at all sufficient, because Braille display is provided only once for
each deaf-bind person and when it breaks down (both Braille displays and PCs do break
down when their time comes, just as living creatures are mortal), the deaf-blind user has
to buy it again by himself/herself. Besides, since the "Barrier Free Supporting Project"
only supports part of the expenses to buy such specialized technology as screen
enlargement software, naturally, deaf-blind people have to pay the rest themselves.
Therefore even if deaf-blind people purchase PCs at PC shops, they still need to pay
some more in order to actually operate it.
However, once we get Braille display and screen enlargement software and prepare the
environment where we can operate our PCs properly, it is like a Heaven! The benefits are
quite a lot from PCs, including wonderful experiences never enjoyed before. They can be
immersed in the world of communication as much as they like, and can search for the
information they would like to get as much as possible for a whole day without asking
others' help. There are even deaf-blind "Internet Couples" who were brought together
through the Internet.
Supporting Environments for the Deaf-Blind to Learn the PC
Once mastered, the PC is a convenient IT device for deaf-blind people. However, the way
to master it is very hard. There are several reasons for that as follows.
1. In case of PCs with Windows, many images and figures are used, which are generally
operated by using a mouse.
At present, it is difficult for deaf-blind users who read information on screen by Braille
output, to operate a mouse or to understand images. In addition, recently the mainstream
of PC software has expanded to include movies and music, both of which the deaf-blind
cannot enjoy without any help by using the present technology. If it keeps on developing
this way, deaf-blind people will be left out even more. One of the causes is the limitation
of the Screen Reader's performance. However, the most important cause is the fact that
PC makers do not take into consideration the presence of people having problems in
accessing information such as the deaf-blind.
2. Few PC instructors are prepared to teach the deaf-blind population
Potentially there are not enough PC instructors who have good understanding of deafblind people. Even though they have knowledge on PC, they still have to understand the
communication needs of the deaf-blind people to support them as instructors. The people
who understand the communication needs of the deaf-blind must be deaf-blind
themselves. One cannot imagine how much a deaf-blind had suffered until getting his/her
own way of communication, placed in the environment without being able to see or
hear...straining just to live a hard life. The deaf-blind have to overcome a lot of hardships
not only to get their own means of communication (such as sign language or Braille) but
also to learn how to operate a PC. Therefore, we can say that deaf-blind people
themselves are most appropriate to play active roles as their instructors.
When we turn our eyes to the situations in other countries, PC training courses for deafblind individuals are provided in such countries as the USA and Sweden. In the USA, at
the Helen Keller National Center, there is a professional who himself is deaf-blind but
works as Manager of the Technology Department. In Sweden, there is a company called
ExKomp, which is like a PC school for the deaf-blind and 90% of its staff are deaf-blind.
3. No support center to provide after services
Even though deaf-blind Japanese are mastering PCs, when the PCs malfunction, there is
not much support under the present conditions. Ordinary users can just bring the PC to
the shop where they bought it and have it repaired, but in the case of the deaf-blind, since
they use enlarged screen or Braille displays, it sometimes happens that the ordinary shops
cannot do anything at all. Therefore once their PC breaks down, they cannot exchange
electronic mails for a while, which increases their frustration.
Utilization of IT ---- PC enables employment of deaf-blind persons
As cited above, there are three major problems in the process of learning PC for the deafblind population. While seeking the ways to solve these problems, I would like to realize
the following three plans. These are all possible by the deaf-blind themselves, and I hope
they will be established as new occupational fields for the deaf- blind population.
Firstly, the development of software. This will be best achieved if the engineer
programmers are deaf-blind themselves. However, even if they are not, both deaf-blind
individuals and the programmers should work as one team to develop appropriate
software. At Smile, the software development project has already started. The software
that Smile developed for the first time is the one that enables use of electronic mails and
Internet in a very simple operation. This software is called Easypad and has allowed
many deaf-blind people to start using electronic mails in the past year.
Secondly, to train deaf-blind PC instructors. The deaf-blind teaching the deaf-blind is
sometimes called peer training or peer instruction. In this way, they can encourage,
support each other and learn to foster give and take relationships. The teachers also learn
from the students and the students get self-confidence and then try to become instructors.
It is very meaningful for deaf-blind people to have self-confidence about something, as
they can be too passive.
The third thing that I really wish to realize is to establish PC schools for the deaf-blind
users. In order for that, we have to have enough deaf-blind instructors, prepare manuals
and ensure that there are enough budgets for personnel expenses and others. If this comes
true, it means that another new environment where deaf-blind people can work will have
been established.
All these could be started, not tomorrow, but at once, if there were more social
understanding especially about the fact that deaf-blind people have the capability to
work. We do need the proper working environment and financial assistance to support it.
In order to expand social understanding, deaf-blind people themselves should publicize
more actively how IT utilizing the PC is useful and effective for them.
References
NPO "The day service center of the Deaf-Blind people smile"
The facility providing day services, training on daily life activities, PC lesson, recreation
and so on, run by the deaf-blind.
URL: http://www.geocities.co.jp/WallStreet_Stock/3975/
Email: db.smile_osaka@nifty.com
Helen Keller National Center
General rehabilitation center specialized in the deaf-blind people in the USA.
URL: http://www.hknc.org
ExKomp
ExKomp is a group of experts in computers and communications for deaf-blind people in
Sweden. It can also provide education to those who have relationship with the deaf-blind
people, in accordance with their requests, who need to be educated as well. The advisors
on supporting equipments, family or relatives and lots of other people need to be
educated.
URL: http://www.exkomp.nu
Mr. Shinichiro Kadokawa, a deaf-blind person, is Executive President of an NPO
(Nonprofit Organization), called "The day service center of the Deaf-Blind people smile".
He reported on "Utilization of IT and Employment" from the viewpoint of being deaf and
blind, introducing some of the practical cases in Japan. This article has been translated by
the Japanese Society for Rehabilitation of Persons with Disabilities.
Your Wheelchair is Ready, Sir: Airline Policies & Blind
Pasengers
By William Rowland (Rowland@sancb.org.za)
The doors of the plane were "disarmed" about twenty minutes ago and most of the
passengers have disembarked, but I am still in my seat. On South African Airways
"passengers needing assistance" wait until last. That's standard practice.
Now it's my turn and the cabin attendant accompanies me to the exit, where a wheelchair
is waiting.
"I do not need a wheelchair. I'm blind, I prefer to walk," I say.
"It'll be quicker," the ground attendant assures me.
"Please don't waste your time. I prefer to walk."
And so an unhappy attendant and a displeased passenger proceed into the terminal, and
towards the next incident.
In a survey conducted on behalf of the World Blind Union, the foisted wheelchair is
cause of the commonest complaint among blind travellers. But there is much more, with
complaints ranging from the merely irritating to the utterly bizarre. Many of the reported
incidents are downright demeaning and some even dangerous.
My survey report was submitted for the attention of IATA (the International Air
Transport Association) in Geneva, who argued that these problems should be raised with
the airlines directly. We said that this was unacceptable and that a piecemeal approach
would be ineffective.
At which point IATA relented and began to engage with us in the development of a
Recommended Practice for adoption by their member airlines at an international
conference. A draft document is now ready and being consulted to participating airlines
and it is reproduced here for the interest and comment of Disability World readers.
GUIDELINES FOR SERVICE TO BLIND AIR TRAVELLERS
Blind air travellers are entitled to the same high quality service as all other passengers.
Safety, dignity, and comfort are the watchwords for such service. Where adaptations to
service prove necessary, care should be taken not to cause unnecessary stress or
inconvenience.
GENERAL
1. Extent of Provisions
Under these guidelines the provisions recommended for blind persons are intended to
apply equally and with the necessary adaptations to partially sighted persons,
deafblind persons, and blind persons with additional disabilities.
2. Personnel Training
Airline personnel and ground staff should receive regular training in assistance to blind
passengers.
3. Access to Information
Essential airline information should be made available in braille, audio, and large print
formats. Websites should be accessible to blind users.
4. Consultation
Airline policies and procedures that apply to blind passengers should be developed in
consultation with organizations representative of blind people.
5. Offers of Help
The protocol should be to offer help where help appears necessary. If help is declined, the
wish of the blind person should be respected.
IN THE AIR
6. Safety Instructions
Braille safety instructions should be made available to blind passengers. Such instructions
should include a tactile diagram indicating emergency exits.
7. Verbal Briefing
The use of oxygen masks and flotation jackets are to be demonstrated to blind
passengers. The location of the nearest emergency exit and of the nearest toilet are
to be pointed out as well as the position of the call bell.
8. White Canes
Blind passengers are to be allowed to retain their white canes in the seating area. Canes
should not be removed and stored in another part of the cabin.
9. Guide Dogs
Blind persons travelling with guide dogs are to be allowed to settle the dog at their feet
and preferably should be seated at a bulkhead or where there is extra space. The dog
should not be muzzled. If the flight exceeds two hours in duration water only should
be offered to the dog. There should be no petting of the guide dog by airline
personnel.
10. Independent Travel
There should be no barrier to blind persons travelling unaccompanied.
11. Meals and Duty Free
Meal service and duty free service should be offered to blind passengers in the same way
and at the same time as to other passengers.
12. Menus
Meal menus should be read out to blind passengers prior to meal service.
13. Entertainment
Onboard entertainment systems should be accessible to blind passengers. Braille
instructions or verbal briefings should be offered.
14. Surcharges
No extra charges are to be levied for services provided to blind passengers.
ON THE GROUND
15. Kerbside Service
Airlines should provide, on request, a kerbside service to enable blind passengers to
transfer from public conveyances or taxis to the check-in counter.
16. Boarding and Disembarking
Blind passengers should be assisted in a timely fashion and not be made to wait unduly.
17. Guide Dogs
Airlines should allow only guide dogs that have been trained by official guide dog
training schools. Guide dogs should be wearing their recognized harnesses on arrival
at the airport and be pre-booked.
18. Wheelchairs
It is not appropriate to offer a wheelchair to a blind passenger or to insist on its use.
19. Passenger Assistance Unit (PAU)
In general blind passengers prefer not to make use of the PAU and choose to board and
disembark in the regular manner.
20. Interface between Airlines
Where blind passengers transfer from one airline to another, rules of responsibility should
be clear at every stage. Blind passengers are to be carefully briefed on the
arrangements that apply.
21. Stopovers and Delays
During stopovers and flight delays blind passengers should be given the opportunity to
obtain refreshments and visit the toilet. It is preferable to be seated in a public
lounge where staff are readily on hand.
22. Passports and Boarding Cards
Passports and boarding cards should be retained by blind passengers themselves and not
be withheld by airport or airline personnel.
Nominations, please!--DRA's Eagle and Turkey Awards
Disability Rights Advocates (DRA) is a Berkeley, California based law firm
November 2004 will mark Disability Rights Advocates' 7th Annual Eagle and Turkey
Awards! As Thanksgiving nears, we'll award Eagles to nationally known individuals and
corporations who demonstrate practices and attitudes that support equal rights and equal
access to life, liberty, and the pursuit of happiness for people with disabilities. We'll
award Turkeys (although no one ever claims theirs) to well-known individuals and
corporations whose policies and practices promote barriers to equal access.
Is there someone you would like to give an Eagle or Turkey? If so, please email your
nomination to us at gabim@dralegal.org (or just reply to this mail). Here are examples of
past award winners:
2002 EAGLES
Portland International Airport for its commitment to providing excellent access to deaf
and hard-of-hearing travelers. The airport has consistently worked with members of the
disability community and it has held numerous focus group meetings in order to gauge
community needs. At the moment, the airport features visual paging that is accessible by
teletypewriter (TTY) phones for the deaf , TTY phones at hotel and ground transportation
information centers, and terminal maps that clearly show where TTY phones can be
found. In addition, the airport also has a list of qualified sign language interpreters that
can be quickly recruited if needed. Visual screens can be found throughout the airport
and they make traveling easier for everyone, disabled or not. In this age of heightened
security, the airport's efforts are especially important as traveling can be a precarious and
frustrating experience -- even if you are not deaf or hard-of-hearing.
AlphaSmart, a technology company that produces affordable and easy-to-use computing
devices that are primarily used in the educational world. Since it's inception in 1992,
Alphasmart has striven to make its portable word processors accessible to students with
varying abilities. Its products possess accessible features such as alternate keyboard
layouts for left and right hand users, "sticky keys" that allow users with limited mobility
to click on one key at a time in a multi-key function, and word prediction software to
facilitate the writing process for students with learning disabilities. In addition, its wordprocessor features different fonts and font sizes that can help individuals with visual
disabilities. Individuals with disabilities are active on the company's Advisory Board and
they moderate the website's community center where other individuals with disabilities
can go to get product support and information.
Fannie Mae for its HomeChoice mortgage loan program, which is designed to enable
low- and moderate-income borrowers who have disabilities or who live with family
members who have disabilities to purchase homes. Fannie Mae has committed two
trillion dollars over ten years to provide assistance to underserved populations. The
company also offers special underwriting flexibilities to individuals with disabilities in
order to make purchasing a home affordable, such as lower down payments, financing for
disability-specific modifications, and high income to expense ratios in housing costs.
Fannie Mae trains lenders to work closely with independent living centers and other
disability organizations. All of their literature is available in different formats. We also
honor Fannie Mae for being a catalyst in helping people who are institutionalized live
more independent lives.
J. Paul Getty Museum http://www.getty.edu/museum/ for its successful utilization of
universal design. The museum has managed to integrate accessible features into all
aspects of the space, from a ramp that winds throughout the sculpture gardens to a fully
accessible tram. The museum's brochures are available in alternative formats and the
museum's myriad accessible features are clearly pointed out on maps. Sign language
interpreters can be arranged and videos are closed captioned. The Getty Museum is one
of the most accessible museums in the world and it proves that access can be beautifully
integrated in to the fabric of the museum.
2002 TURKEYS
California State Board of Education for its politically motivated and hastily implemented
High School Exit Exam. The State Board has stuck to an extremely short time line for
implementing the exam. This time line does not provide a realistic time frame for the
alignment of the students' curriculum to the standards of the Exam and it expects students
to know material they have never been taught. The California High School Exit Exam has
one of the most restrictive accommodations policies in the nation for its high school
students with disabilities. The use of accommodations which are regularly used in the
classroom and on other exams, such as spell-checkers and calculators for students with
dyslexia and dyscalculia, or readers for blind students, invalidate the students' test scores.
In addition, the State Board has instituted no form of alternate assessment for students
whose disability prevents them from being accurately assessed by standardized exams.
The consequences are no surprise: nearly 90% of students with disabilities have not
passed the Exit Exam and are currently on track to be denied a high school diploma.
The State of Louisiana for its total disregard for disability community's desire to live
independent lives outside of nursing homes. Ninety-three cents of every medicare dollar
is spent on nursing home facilities in Louisiana. The State's ratio of nursing home beds
per capita exceeds the national average by more than 50%. Furthermore, attendant wages
average $5.56 and only 7% of these attendants have health benefits. With statistics like
this, it is no wonder that disability organizations have labeled Louisiana the worst state in
the nation.
Walgreens Corporation for its discrimination against individuals with mobility and visual
disabilities. Walgreens stores are consistently cluttered with merchandise and aisles are
frequently blocked with merchandise and storage bins, therefore creating a frustrating and
hazardous experience for customers with disabilities who attempt to shop at the stores.
Customers have reported getting trapped in aisles and tripping over merchandise. Due to
Walgreens' refusal to correct this problem, a lawsuit has been filed against them to enable
customers with disabilities to shop without barriers.
The United States Treasury for its refusal to print bills that are accessible to individuals
with visual disabilities. U.S.banknotes are identical in size and color and as such,
individuals experience unnecessary impediments when going about their everyday lives
from shopping to taking public transportation. These individuals are also at a higher risk
of being victims of fraud and deception. Over 120 countries around the world have taken
steps to alter banknotes to make them more accessible and the National Academy of
Sciences, in 1995, issued a recommendation to the U.S. Treasury on this matter.
However, the Treasury ignored the recommendations. Currently, the American Council
of the Blind is battling the Treasury in court on this issue.
2001 EAGLES
Wynd Communications Corporation for its leadership in developing communication
technologies for individuals who are deaf or hard of hearing.
New Mobility Magazine for its mission to improve the quality of life of wheelchair users
"with information, empowerment, and entertainment".
Cingular Wireless for their commitment to include people with disabilities in their
marketing campaign. Casey Martin for his drive in pursuing equal access on the golf
course.
2001 TURKEYS
Wal-Mart Stores, Inc. For the second year in a row as a result of its persistent
discriminatory actions against individuals with disabilities, including a failure to work
with groups that act as job "coaches" for individuals with disabilities. As of November
2001, Wal-Mart had 16 disability suits pending against them, including one brought forth
by an individual in a wheelchair who was refused a job application as a result of his
disability. Another suit has been brought forth for a second time by deaf plaintiffs as a
result of Wal-Mart's refusal to honor a settlement agreement in a 1998 lawsuit which
involved a lack of alternative training materials for deaf employees.
Sixth Circuit Court of Appeals Nominee Jeffrey Sutton for his total disregard for the
Americans with Disabilities Act, which he claims is unnecessary. Sutton argued against
the ADA in several high impact Supreme Court rulings. Sutton also argued against the
Olmstead Act in the Olmstead v. L.C. case and stated that states had no duty under the
ADA to serve individuals with disabilities in integrated settings. Sutton is also in favor of
limiting the protections of Medicaid, Section 504, and the IDEA.
McDonalds Corporation, Inc. has proven itself worthy of DRA's third Turkey award as a
result of its total disregard for the ADA on an international level. Outside of the United
States, McDonalds restaurants are architecturally inaccessible to individuals with
mobility disabilities. One would think that McDonalds, with its plethora of resources,
would attempt to be a model of American values and virtues overseas. Instead, it has
chosen to only provide access where it is mandated to. Shame on McDonalds for
choosing to do the minimum that it can do. DRA challenges McDonalds to become a
better global citizen.
The Jerry Lewis Telethon for using pity as a tactic to raise money. In September, during
his annual telethon to raise money for the Muscular Dystrophy Association (MDA), Mr.
Lewis advised disability activists to stay in their houses if they did not want to be pitied
because they were "cripple" and in wheelchairs. Mr. Lewis is the one to be pitied for his
ignorance, however. While we are appreciative and respectful of the amount of money
that Mr. Lewis has been raising for the MDA for the past 35 years, we wish he would
find a way to do it that would confer dignity upon persons with disabilities instead of
pity. "Jerry's kids" have grown up after all.
2000 EAGLES
Microsoft Corporation for its commitment to developing accessibility features in all of its
software.
Bank of America for its commitment to to install over 2,500 "talking" ATMs across the
United States.
Pacific Bell Park for being one of the most accessible stadiums in the world.
ADAPT for vigilantly fighting to strenthen the Americans with Disabilities Act and other
federal and state laws that protect individuals with disabilities.
2000 TURKEYS
Cinemark USA, Inc. One of the largest movie theaters companies in the nation, Cinemark
places its accessible seating in the first rows of its theaters, forcing patrons with
disabilities to crane their necks to view the screen. People with disabilities ask to sit
throughout the theater with lines of sight comparable to those enjoyed by the general
public.
University of Alabama appealed Garrett v. University of Alabama to the U.S. Supreme
Court. Garrett claims that her employer, the University of Alabama, demoted her after
she was diagnosed with breast cancer. The University asked the Supreme Court to hold
Title II of the ADA unconstitutional when applied to state entities such as universities
and public schools, places often in violation of the ADA.
Chuck E. Cheese fired Donald Perkl, a cognitively disabled employee, because of his
appearance. Perkl's manager stated that he didn't want "those type of people" working at
his restaurant. After multiple attempts to appeal by Chuck E. Cheese, the case went to
trial. The defense argued that Perkl was "too retarded" to feel pain and thus should not
receive compensatory damages. The jury ultimately awarded Perkl $70,000 in damages
and Chuck E. Cheese $300,000 in punitive damages, the maximum allowed under the
ADA.
Representative Mark Foley, republican congressman from West Palm Beach Florida,
introduced the ADA Notification Act, a bill proposing to amend the ADA to require a 90day notice to a prospective defendant to correct an alleged violation before the
commencement of a civil rights action regarding public accommodations or a commercial
facilities. The bill would provide businesses that have already had over 10 years to
comply an additional opportunity to delay.
Access and Technology Briefly
Compiled and edited by Jennifer Geagan, World Institute on Disability
(Jennifer@wid.org)
New Internet browser allows users to talk to their computer to be launched later
this year
Opera Software from Norway is developing a new Internet browser that allows users to
talk to their computer. The new browser incorporates IBM's ViaVoice technology,
allowing the computer to ask what the user wants and the listen to the request. The
demonstration version is only available in English, and the company plans to launch the
product for sale later this year. For more information, please visit the Opera Software
website at http://www.opera.com/ .
14 sailors with disabilities participate in the Halifax tall ships festival on accessible
vessel
The Winnipeg Free Press reported that the tall ship Tenacious, a British vessel with a
crew of 32 that recently landed in Halifax, Nova Scotia after a 12-day trip from New
London, Connecticut to participate in the city's tall ships festival, had a crew in which
fourteen members have physical disabilities. The Jubilee Sailing Trust, a U.K.-based
charity, raised funds to build the ship with accessibility features that include brackets that
can fasten a wheelchair to the deck, wide decks and powered lifts, as well as a speaking
compass for people with visual impairments and vibrator alarms for those with hearing
impairments. The entire Winnipeg Free Press article can be read on the DPI website at
http://www.dpi.org/en/resources/articles/08-04-04_tallship.htm .
U.S. Access Board releases revised ADA Accessibility Guidelines
The U.S. Access Board announced the release of new design guidelines that cover access
for people with disabilities under the Americans with Disabilities Act. The guidelines
update access requirements for a wide range of facilities in the public and private sectors
covered by the law, detail how accessibility is to be achieved in new construction and
alterations and provide specifications for various building elements and spaces, including
entrances, ramps, parking, restrooms, and telephones, among others. The new design
document is the culmination of a comprehensive, decade-long review and update of the
Board's ADA Accessibility Guidelines, which were first published in 1991. Revisions
have been made so that the guidelines continue to meet the needs of people with
disabilities and keep pace with technological innovations. For more information, please
visit http://www.access-board.gov/ada-aba.htm .
AT Works : Online Tutorial Series
Assistive technology resources and services can be very effective tools to help expand
employment opportunities and enhance prospects that someone will be successful in
reaching his or her employment goals. One way to explore ways that AT can be used is
through case study scenarios that describe how technology resources or services were
used to deal with accommodation issues. Actual case studies have been used to create a
web-based training resource that rehabilitation and education personnel, students in preservice training programs, consumers, technology specialists or others can use at any
time. The online course is free, and CRC continuing education credit is available for
those persons that successfully complete each exercise. For more information, please visit
http://www.techconnections.org/training/webcourse/ .
Employment
Assistive Technology on the Job: The Difference
Technology Makes
By Amy Noakes, B.S. and Tanis Doe, Ph.D., Community Research for Assistive
Technology
"The talking and Braille computers really contribute to my being able to do a job because
I can store information, organize information and retrieve and research information from
the 'Net' by using talking and Braille computers. I also give presentations by using the
Braille computer to read my Braille notes. By using those types of AT, I am able to
manage information to successfully do a job."
Background
In the last few decades, technology has transformed virtually every aspect of our society.
Particularly in the areas of communications, transportation and healthcare, technological
advances have had a monumental effect on how we all live in today's world. These
changes occurred at both the macro and micro levels, with infrastructures connecting
distant computers and individuals learning new skills.
The effect of the advances in technologies on people with disabilities is exponential in
both positive and negative directions. With the right technology lives are dramatically
improved, but without access to technology lives can be significantly worsened. On a
daily basis we witness new ways in which technological advances enable people with
disabilities to more fully participate in all aspects of work and daily living by performing
tasks previously considered beyond their capabilities. These advances in the lives of
people with disabilities don't simply impact the individual's capabilities; they also reorder
social perceptions of persons with disabilities. In addition to helping to create a new
social view of persons with disabilities as capable and contributing members of society,
these technological advances have also contributed to a positive change in the way in
which individuals with disabilities view themselves, and indeed the entire disability
community's cultural identity.
The Community Research for Assistive Technology (CR4AT) researchers had previously
identified several major gaps related to the employment of persons with disabilities.
These include:
• A lack of awareness of the benefits of employment for individuals with disabilities.
• A lack of universally designed technology that creates lower-cost devices to assist in
employment settings for those on limited incomes.
Policies that govern access to AT for the workers who are disabled lack
comprehensiveness, are not sufficiently consumer-oriented and require better
coordination to create an accessible system of procurement. Specific questions CR4AT
raised about employment included:
• What are the barriers to employment that AT can remove?
• Does AT improve employment outcomes?
• Who pays for AT?
• How can AT assist those who work at home?
Results of focus groups
Answers in response to these questions ranged from simple to extremely complex. Our
focus groups confirmed what we already knew: AT does improve employment outcomes
for persons with disabilities. AT provides functional value, enhances productivity and
increases physical and mental health. We also found there are many barriers to using AT
in employment for persons with disabilities. Education of employers, co-workers, and the
general public is needed to demystify disability and the use of assistive technology.
Societal level changes and structural changes need to succeed if individual level changes
have a chance to succeed. In addition, funding sources for AT need to be streamlined and
a standardized system should be adopted within funding agencies to aid those acquiring
AT. Another major finding was the fact that AT does not need to be deemed "special,"
but rather, if more products and devices were universally designed for a broader range of
abilities, then the AT system would be vastly improved. The market for "special"
technology is tiny in terms of comparison but the market for universally designed
equipment or systems is enormous.
When asked what types of AT are used for employment, the majority of the respondents
revealed that a variety of devices are used. Adapted computer hardware and software,
such as roller ball mice, flat screen monitors, large monitors, screen reader programs such
as JAWS, and other adaptations were noted. Ergonomic office furniture, such as
adjustable desks and keyboard trays, was common. Mobility aids such as wheelchairs,
canes, or crutches were used by a variety of participants to enable them to be mobile both
on and off the jobsite. Devices for the hearing impaired, such as amplified telephones,
were frequent. Conventional technology like personal digital assistants (PDAs), cellular
phones and tape recorders also enabled those with disabilities to perform their job
functions effectively. One respondent noted:
"I use my computer with different types of programs and I use a mouse--it is a little bit
bigger than your average mouse. I have a reacher so that I can pick things up and grab
things off of the floor if I need to or whatever I need to get to work."
People used power wheelchairs to go to work or other necessary places in the
community, and a lift-equipped vehicle was essential for people using power chairs.
Hands-free phones and other communication devices allowed consumers to work and
communicate at the same time. An individual might use multiple AT devices for support,
assistance, and enhancement of job performance.
AT in Employment: The Importance of the Ecological Model
At the individual or personal level, focus group results found that employment provided
meaning and a sense of self-esteem to many respondents. Improved physical health,
enhanced mental health and an increase in independent living skills and abilities were
also identified as direct results of a person with a disability being employed with proper
AT to aid them in performing their jobs. This contributed to individual income and access
to benefits for a number of people with disabilities. Functional ability and AT were
closely related in terms of being able to do daily activities at work without assistance
from others. This led to individuals feeling more independent and more capable of
participating in the workforce, despite the beliefs of many that, "disability is synonymous
with needing help and social support, reinforcing associations between disability and
conditions of helplessness, incompetence, and the perpetual receipt of various forms of
assistance" (Orange, 1997).
Impact on physical & mental health
People's health was positively influenced by the use of technology in the workplace and
through the provision of alternative work options by employers. For example, for
employees who fatigue easily, employers provided additional breaks and other non-AT
related accommodations. Job related tasks were made more comfortable and easier to
accomplish by the use of AT, which in turn provided an increase in productivity in the
workplace for both the employee and employer. When AT and reasonable
accommodations are provided, tasks are completed on time and people with disabilities
do not have to exert as much energy with the use of AT to complete the task than without
the AT, which leads to improved health.
In addition to physical health, mental health was also improved by the use of AT in the
workplace. A healthy sense of self-esteem and an ability to consistently strive for better
opportunities and increased independent living outcomes is gained from actively
engaging in sustainable employment through the use of AT. There is a sense of inclusion
in society through employment that breaks down the marginalization of persons with
disabilities in the workforce, and society as a whole. Self-determination is a major goal
for people with disabilities and AT contributes to more options and a wider range of
choice. With employment, a person with a disability is able to contribute to determining
his or her own destiny and is able to live a better and fuller life than the alternative-getting by on limited funds from government or private social programs.
According to one focus group participant:
"Well, I have a job, I work for the county and I have been there for over two years and
the way I see it right now is that I know I can do better than that but it takes time to build
up your skills and to get the job you really want to get but to do that I have to build up my
reading, writing and math and this is helping me to move to the next step ahead. I never
thought that I would get this far in life; I have a lot more hope."
Increasing self-efficacy
Appropriate assistive technology can increase self-efficacy and give people a belief in a
better future.
While AT has a major impact at the individual level by enhancing job performance and
mental and physical health, the use of AT to access one's community and place of
employment influences how a person with a disability accesses and interacts with their
environment. On the service level, there is a call to examine the disabling environment
rather than examining personal limitations (medical model) or functional limitations
(economic model; Orange, 1997). By creating accessible environments, people with
disabilities can better become gainfully employed. Participants revealed the need for
specific AT in employment settings. For many, the needed accommodations included
universally designed changes to their office spaces, such as windows for natural lighting,
relocation of cubicles, and creating a more centralized source for common resources used
by everyone in the office.
One focus group participant said:
"If I had ample money, if money weren't an issue, I would find a location closer to public
transit, I would centralize the supplies, and have all ergonomically designed equipment
and furniture for everyone. I would try to address the needs of every employee, including
those who aren't the normal AT user."
Need for improved service delivery
At the service level there is also a need for employment counseling and services delivered
effectively to disabled consumers. AT services need to be accessible and supportive for
people seeking employment. Community agencies, including Independent Living Centers
are part of the system level that needs to change to ensure AT is made available when
needed. Employment is a vital component of every adult's life. For many with
disabilities, seeking employment is too often experienced as yet another adversary
encountered on the road to independent living. By looking outside the person's disability,
and focusing more on altering the environment to accommodate one's needs, employment
for persons with disabilities is not only possible, but it increases inclusion of the
disability community into society.
On a societal level, systemic issues surrounding disability were uncovered. The use of
universally designed products and services was recounted several times. Universal design
is defined by the Center for Universal Design at North Carolina State University as "the
design of products and environments to be usable by all people to the greatest extent
possible, without the need for adaptation or specialized design," (CFILC, 2001). Elevator
buttons, bank machines, telephones and information kiosks all have the potential to be
universally designed. Elevators that include instructions in Braille, visual floor displays
and audio call-outs of the floor and the direction the elevator is traveling is an
incorporation of universal design, (CFILC, 2001). "Another example is the use of volume
amplification on telephones. This was originally designed for individuals who are hard of
hearing, but it has proven to be very helpful to everyone using telephones in noisy
environments such as an airport" (Alliance for Technology Access, 1999).
One respondent relayed her or his experience with universally designed products that
enhanced job performance and improved the participant's customer service skills on the
job:
"Of course things like the phone help me, hands free phones are just a blessing to me; and
the other thing, we have devices and things around the store that I use--the little shopping
baskets, if I'm assisting a customer for things they actually give me things to put in the
basket to carry for them."
As more universal design principles, parameters and products are incorporated into
legislation, the need for major redesign and architectural accommodations in the
workplace will decrease, allowing more persons with disabilities to access and obtain
employment opportunities. At the macro levels there are also issues of design, policy and
attitude. There must be a political will to implement programs that support people's
employment through technology. Attitudes toward both AT and people with disabilities
need to change to ensure that AT will support the employment goals for people with
disabilities. Employers' attitudes need to change in terms of being willing to hire disabled
candidates and provide them with necessary equipment. Policy changes at the federal and
state level are also essential to standardize the availability of AT.
How Do People Obtain AT?
We asked AT users how they obtained and paid for their equipment, how expensive it
was, and what, if any, problems they encountered in securing funding. We found that
devices were funded through a variety of sources. Some people paid for the devices
themselves or were helped by their employers or the California Department of
Rehabilitation, while others relied on their health insurance provider to buy the AT
needed in the home, which also aided at work.
Some of the focus group participants acquired their AT through self-advocacy. They
knew what types of devices worked for them, and were able to define their needs. They
conducted research with the help of the Internet and co-workers in order to locate the
appropriate devices to aid them in their employment and education.
"I went to the wheelchair evaluator's and I pretty much knew what style I wanted and
what I wanted on it. The equipment that I use at work was recommended to me by a
coworker who helped me research equipment and pick things out."
Participants reported that they paid for much of the AT they used both at home and on the
job themselves. Common or mainstream items such as computers, cell phones, and PDAs
were the most commonly identified of these kinds of items. Prices ranged from under $50
up to $1,600 for the devices they purchased out of pocket.
A small percentage of the participants had AT devices funded through their employers.
One hundred percent of these respondents had a positive experience with the employer
paying for devices. Employers were found to be quite willing to purchase the devices
people would need on the job. Some had exceptional experiences where the AT was
bought for the employee before the employee even started work.
"Now the job that I have now, they got the assistive listening device before I even started
the job, I just mentioned it and gave them a flyer on it and they went ahead and got it
before I even got the job."
Health Maintenance Organizations (HMOs), Medi-Cal and other insurance agencies had
purchased equipment that consumers used in getting to work, being mobile on the jobsite,
and for activities of daily living. The most commonly used devices were wheelchairs and
other mobility devices. Much of the equipment that a person needs is not only work
related, but also used in the activities of daily living. Expensive mobility aids, like
wheelchairs were most commonly funded under the term Durable Medical Equipment
(DME) from a large healthcare insurance plan, such as an HMO, Preferred Provider
Organization (PPO), Medicare or Medi-Cal, although these items sometimes have strict
restrictions on use. Often the HMO insurance expects a co-pay so individuals need to
contribute out of pocket.
DME is defined as "medical equipment that is ordered by a doctor for use in the home.
These items must be reusable, such as walkers, wheelchairs, or hospital beds" (Medicare,
2003). For example, an item like a wheelchair must be for use only in the home to be
funded through Medi-Cal. Say for example, someone has limited mobility and needs a
scooter to get from his or her house to the bus to work. Often, health insurance will not
cover the needed AT. However, if the scooter can be used in the home, then these
agencies usually can cover it. Nevertheless, it must explicitly state in the request that the
item is only for use in the home. Much to the chagrin of many people with disabilities,
the needed devices that are covered under these healthcare plans often take months to
years to receive. This wait further impacts one's ability to join the workforce with the AT
necessary to conduct the activities of the job in an efficient and productive manner.
"The amount of my AT computer and mouse was I think $1400 in that area and as far as
the process, it was like a three to four week process relatively easy to my employer, so
that was the good part, but when dealing with other AT, it's rough, especially with MediCal."
The California Department of Rehabilitation (DOR) was not commonly mentioned as a
funding source for AT in employment. However, for those who did receive funding for
AT through DOR, there were mixed experiences of both positive and negative. Some
people easily received the services and devices they needed from DOR.
"I went to Department of Rehabilitation and they sent me to an access center to be
evaluated and that is how I got my note taker and I also got a computer and now they are
setting things up so that I can go to a computer class now that I have my own computer
because I am about to start a new job."
For others, obtaining AT through the DOR was a difficult process. Due to the length of
time it takes to receive AT for services, DOR was not a successful funding source for
many participants in the focus groups. Often this was seen with larger, costlier items such
as wheelchairs and modified vehicles.
"There was a lot of time involved in the van and the power chair. When dealing with the
HMOs or DOR, my [modified] van was a two-year process. I had to go through a lot of
stuff to get to that point. When you have [to get] all of your equipment and safety
features, those things tie you up for days and weeks it seems like. But I didn't have any
hassles when it came to the employer paying for the [other] equipment."
Funding AT is quite complicated and often involves great time delays. Participants had
varied experiences getting their equipment funded. For some, it was a relatively quick
process from getting the referral to receiving the device. Commonly, however, acquiring
AT is a long and arduous process that can last months or even years. Many reasons given
for not being able to get devices funded is the lack of funding sources, ineffective
services from the funding sources, and the amount of time one has to invest in the
process. It can be concluded that the smaller, less expensive items needed as
accommodations do not seem to be a problem for persons with disabilities. It is the
larger, more expensive AT devices that prove difficult to obtain through the various
funding agencies, such as DOR or Medi-Cal. For more information regarding the many
issues associated with funding, see the chapter titled, "Funding & AT." This section only
examined funding issues for AT used for employment.
How Does AT Successfully Impact Employment?
We were happy to learn that many individuals' lives have been enriched by having access
to AT. Focus group participants were asked how equipment helped them access
employment, including self-employment, and the difference that having AT has made in
their work lives.
Due to having AT available to them, several individuals reported that they could become
employed or become more employable than they had been without AT. Several
respondents mentioned that the use of AT allowed them to get to their worksite by using
adapted private transportation or by using accessible public transportation. AT was
reported to enhance effective communications on the job and computer-aided technology
helped many individuals in performing their job functions at the level that was expected.
"Without the technology, I don't think I would be employed today. It has allowed me to
perform the essential functions of my job and keeps me informed on the AT that is out
there. Before I worked here, I did not know the Quadjoy mouse existed and it has allowed
me to again become a full-time employee."
For many participants in the focus groups, the functional value of using AT was closely
related to productivity on the job. Persons are able to work longer at certain tasks with
adapted equipment than they would without it. AT helps decrease pain and fatigue.
Communications aided by AT also had an important functional value on the job. For
those who are hearing impaired and wear hearing aids or need amplified telephones, they
were able to receive those devices and work more efficiently, and in some cases advance
into upper management positions.
Mainstream devices such as cellular phones, personal digital assistants, and laptop
computers are everyday devices that enable persons with disabilities to function and
perform well in their current employment as well as obtain employment. These devices
become vitally important and necessary for persons with disabilities. Because they are
not considered "special equipment" many persons with disabilities have incorporated the
use of these devices into their daily routines at minimal cost.
"It has allowed me to do everything I need to do as far as what's in my job description,
having six counties to travel; if I didn't have my accessible vehicle I wouldn't be able to
get to all of those locations, doing state wide and national activities; again, the vehicle is
tremendously important."
This consumer also used a PDA, cell phone, and computer to keep organized,
communicate, and enhance productivity at work. AT for employment need not always be
"specialized" equipment; many popular devices that are available to and used by people
without disabilities are especially important tools for independence for persons with
disabilities.
"By going from the pushchair to a power chair I am exerting less energy. The power chair
allows me to be more productive. I experience less fatigue."
The Internet and e-mail have created an equitable playing field for both those with and
without disabilities. The introduction of the Internet has allowed people with disabilities
to disclose their disability only when it becomes necessary. This in turn has created a
major change in the way others view persons with disabilities, and how people with
disabilities view themselves.
As one key informant stated,
"You add the introduction of the Internet and suddenly I am on equal ground with
everyone else. It's interesting because another part of what I do is have to answer
questions and talk to people by e-mail, and input forms; what is interesting is I can
actually introduce my disability when it's relevant. But until I introduce it, I'm not seen as
a disabled person. It's been interesting to watch the kind of effect because all my life I am
used to people reacting to my disability first, and then me. Whereas, on the Internet, it's
turned around and they get to know me first and when it's relevant, I get to introduce my
disability" (P. Hoye, personal communication, July 8, 2003).
Barriers: Still Striving for Success
Participants were also asked about the barriers they faced in employment using AT. An
employer's perception of disability, the perception about the cost of reasonable
accommodations, the lack of training on AT devices for the user, and problems with
repairs and fitting were all problematic areas.
Negative employer perceptions of disabilities impact employability for people with
disabilities. Discrimination by employers against persons with disabilities seemed to be a
common occurrence in the job hiring process. Employers were not able to determine
disability by looking at a resume. However, when the person with a disability was called
in for an interview, the common experience with many respondents was that the
employer was taken aback and unprepared or unwilling to hire a person with a disability.
Consumers felt that the employer's negative perception of disability should be tackled
through additional education and training for employers rather than just a review of the
laws surrounding employment for persons with disabilities, such as the ADA. But rather,
a better approach needs to be made at showing that disability is not something to be
feared. Moreover, persons with disabilities felt that not only do employers need to be
educated regarding disability awareness and sensitivity, but coworkers as well.
"Sometimes we need to educate a company's fellow workers and not just the employers.
Someone may need an extra break as an accommodation--people shouldn't tattle on
someone who needs an extra break. There may be good reasons."
In addition to getting past the interview, persons with disabilities relayed that they
experienced a reluctance on the part of employers to provide accommodations, often
because employers were misinformed about costs and did not understand that
accommodations or alternatives could be made in a cost-effective manner for the
company.
Professional training on their AT devices was a requirement expressed by many focus
group participants. However, training proved problematic. The time investment to train
on AT devices for employment was often seen as lengthy for both employees with
disabilities and employers. In some instances, employees were provided with the
equipment; but it was never properly calibrated to work with other devices. When no
training is provided on the proper usage of AT devices, it negates the entire purpose of
having AT to aid in performing functions on the job.
"Yeah, I can type in messages and everything on it, I know how to use the Braille note,
but we have never taken it to the printer and I don't know how to hook it to a printer."
"The roller ball (mouse) helps eliminate stress on elbow; voice-activated software is goal
for self, but is time-consuming to train system and to learn."
Moreover, many persons go without the needed AT in employment because they are
afraid to ask their supervisors for accommodations. In several focus groups concerning
employment, it was revealed that many people just simply did not ask for the devices
they needed, and many lost their jobs because of it. Others asked for the
accommodations, and were accused of complaining and asking for too much.
"But it's like you're afraid to complain and when I did my boss threw my paperwork at
me. I asked to be transferred out of the unit. And then I ended up with a very nice boss.
When you get discriminated against when something bad happens, it's hard to ask."
Instances of sexual and racial harassment are prominent and well-publicized examples of
the difficulties an employee with less power can encounter when trying to contend with a
senior person with more power. Disability discrimination is another form of employment
harassment. No one should have to be uncomfortable requesting equipment that one
needs to do one's job.
Transportation proved to be another problematic area for many when it came to
employment. As was repeatedly stated, "one cannot be employable without the ability to
get into work." Unfortunately public transportation is unreliable in many areas, and being
late or not showing up to work is not an option for many people and causes adverse
effects on their employment status. It would make sense if people without adequate
transportation could work from home or telecommute, but this does not seem to be
common among the people we interviewed. According to one of our key informant
interviews, "California is the culture of the automobile." Public transportation is limited
at best in a city and nonexistent once you get outside of the greater city limits. While
busses and other public transportation have made many strides in making their system
accessible, service is still limited in suburban areas and almost nonexistent in rural areas.
Dr. M. Clark commented (personal communication, July 11, 2003):
"They understood the first time I was late, but if you do it too many times, you are
screwed and they are going to try and work something out where I don't loose a point. I'm
at their [transportation service] mercy waiting to get picked up."
What Happens When AT Is Not Available?
We wanted to learn more about what happens when equipment is taken away or not
available for use, either because it is broken, needs repair or is in the process of being
replaced. By not having the proper equipment, not only is work productivity negatively
influenced in employment, but also health and function are adversely affected. This issue
arose most when consumers' AT had broken down and needed repair or replacement.
Broken equipment or equipment sent out for repair or replacement can place an undue
burden on the person with a disability who relies on that equipment to perform well in
their jobs every day. Outcomes include the inability to work at all while the equipment is
unavailable, not being able to produce the quality of work that is set for an employee, and
a decrease in functioning or an increase in pain. As one participant confided:
"I had trouble with a computer once on a job and I was off for three days."
When asked what would happen if the AT a person needed was out of order and
unavailable for use, participants revealed a myriad of responses. All responses detailed
that the person could "get by" without the AT if they "had to," however, respondents
stated that daily functions would be more time consuming and difficult, and their
employment options limited.
"I would survive--I am always a survivor-- but I would have to go back to the cave men
days of doing things. Back to manual wheelchairs, back to a vehicle that I will have to
transfer myself from the vehicle, I would have to fold the chair up and put it into the
vehicle. I think I would be able to find a job, but I am sure I would be under-employed in
that situation so it wouldn't be a job to where I can make enough to support my family
and myself."
For those participants who previously had equipment break down and it was not available
for use at work, they felt a profound sense of loss and realized the extent to which they
rely on their AT to perform well in employment.
"For me, I use PowerPoint to teach, and I found out just how much I needed it when the
power point [projector] bulb went out. So it showed me how hard it was."
"I have been stuck at work all day with no batteries for my hearing aid and I can't
function; when the battery goes, you're gone, you're done."
Respondents felt that employers recognize the financial benefit of having employees with
proper AT accommodations. In employment, when a device breaks down, it not only
affects the functional aspects of the job performance, it also impacts the productivity of
the employee who uses the device. When work does not get completed on time or in a
consistent manner, not only are there problems for the employee, but also the employer.
Suffice it to say, situations like this can cause a performance issue for the employee and
ultimately the loss of a job. One participant, while interning, was prevented from
completing projects on time due to equipment problems and computer malfunction. The
participant was not able to function independently without reliable equipment and would
rely upon last-minute assistance from managing personnel. The respondent stated that
employers were "not impressed" with this situation, and did not choose to hire the
participant permanently after completing the internship. A failure in AT that a consumer
relies upon can be detrimental to a person's employability. Individuals will not be hired if
they cannot compete, and often the key to performing well in the workplace is finding the
right AT.
Strategies for an Effective AT System
We also asked people what they wanted to change. It was everything from individual
skills to systems and services to policy change. Consumer education, employer education,
and professional training were mentioned numerous times. In addition, participants in the
focus groups wanted to see policy changes enacted that would create standard eligibility
criteria from the funding sources, universally designed devices from manufacturers, and a
large-scale, public education campaign about disability issues.
While AT has enabled many persons with disabilities to gain employment, there are still
some areas for improvement when it comes to "matching" equipment appropriately.
Some, but not many, also felt that aesthetics were important and that equipment should
look less medical if possible. For some, it's about the ease of using the equipment, or
having the equipment compatible with standard office equipment, such as a computer or
telephone. Others would like to see AT that is more portable. Almost all of the
participants would like to see an improvement in the services they receive for repairs and
maintenance of the equipment as well as equipment that is functioning in a consistent
manner.
"If I have a product that can increase my independence with the greatest ease while in
use, being easy to plug in or unplug, also portability, anything efficient and un-facilitated
will make me happy, just 'plug and play.'"
Educating employers about both disability issues and AT was a frequent theme. The most
common and relevant concerns included:
• Exposing the real and perceived costs associated with accommodating an employee
with a disability
• The employers' responsibilities to provide information alternatives
• Combating discrimination against people with disabilities by educating the general
public on disability issues via public announcements, and more exposure to the
disability community
We received a cross-section of responses in regards to education on employment
accommodations and employing persons with disabilities. In terms of public education,
the respondents believed that disability needed to be demystified for the general public:
non-disabled persons and employers.
"If I had a magic wand I would change society's attitude about hiring people with
disabilities."
"I think education, period, just would enlighten us on things. I would like to take them
and put them in a [wheel] chair for half a day and tell them to deal."
Participants also felt that more assistance could be provided from agencies that promote
employment for persons with disabilities, such as the California Department of
Rehabilitation. We received responses relaying that consumers felt the Department of
Rehabilitation could be conducting more education and outreach with local employers,
letting them know and understand the benefits of hiring persons with disabilities and
easing their fears or concerns about the cost of accommodations. Consumers also wanted
to see the Department of Rehabilitation encourage employers to use the department's
resources for hiring, a practice consumers thought wasn't occurring regularly.
"I think that this information should be available to the everyday employer; they need to
be educated to hire people like us. I don't have a lot of experience and I don't feel like
DOR is trying to help me get any."
"AT really isn't as expensive as most employers think it is and even the simplest items
can be considered AT that will enable someone to perform their job like it should be
performed; it's just an attitude change that we need."
CFILC was not mandated to focus on education in this project but it has direct relation to
employment for people with disabilities. Moreover, once disability is demystified,
education on AT is also needed, from the concept of expensive and high-end, to
something defined as useful for all, not only those with disabilities. In addition, AT needs
to be looked upon as just another tool in the step to employment instead of "something
special." Dr. M. Clark suggests (personal communication, July 11, 2003):
"A two-prong attack: tax incentives for employers and offer workshops in the industry
and in the community to educate everyone. AT is not a scary thing. People don't
understand what AT is. They think it's the high-end, super-duper computers, but more
often than not, it's just down and dirty ... figuring out what is the cheapest way to achieve
the task."
"I would probably look at universal design to try and educate employers so that they
understand more and are able to access more as far as being able to see that type of
productivity. It is important to me that they see that."
A common suggestion that prevailed not only in employment issues, but through all focus
group topics was the need for a national system or standard related to AT. The need for
funding agencies and others to standardize the definition of AT exists. This definition
needs to look at the practical uses of AT in a more broad fashion so that AT usage
encompasses more than the medical model. Respondents felt that if change were to truly
occur that it would need to begin at the higher levels of leadership, who then could set
and implement policy.
"Change has to happen at the leadership level for it to trickle down, so I would look at the
states, countries and counties to change their attitudes on hiring people with disabilities.
When they change, the attitude will trickle down and change people's opinions on people
with disabilities."
Because the funding agencies follow the ingrained philosophy of the medical model, the
time it takes to get devices funded can be incredibly long and grueling. The suggestion
was made consistently to streamline the funding process by making the forms available in
various agencies and online, as well as cutting down the time it takes to receive an
answer regarding the funding of devices.
"I would like to see when you apply for devices to have a shorter turn around time,
instead of waiting 60 days for them to tell you that they don't know if you can get the
device or not, then you have to wait another 30 days to find out what they decide to do,
then it takes another 30 days for the process to go through. It is such a long process and
they keep saying, 'We have so many of you.' I know a lot of people who have gone
through that [wait]."
As much of the technology that was originally intended as AT is becoming more and
more mainstreamed for non-disabled users, there is a wider acceptance of these devices.
However, devices intended solely for those with disabilities still carry a stigma that nondisabled persons have a hard time accepting and using.
"The technology that was most beneficial was what the hearing people were willing to
accept. They gave me a TTY when I'd been there for 9 years. Nine years later two people
in the school district had called me on the phone in all that time, because they refused to
use the Relay. E-mail came in at the same time and ALL of my communication became
e-mail, and that saved my job. Because the TTY was a deaf device and e-mail was not."
Originally published in How it Works: AT Narratives from California,
http://www.atnet.org/CR4AT/howitworks.htm#12
"Bridges to Employment" Conference Draws 250
Disabled Latino Job Seekers and Grassroots Advocates
More than 250 job seekers, employment experts, disability and Latino advocates and
employers convened in Chicago, July 14-16, to increase employment opportunities for
Latinos with disabilities. This year's 'Bridges to Employment' conference - organized by
the World Institute on Disability's National Technical Assistance Center, Proyecto
Visión, attracted significantly more community members involved at the grassroots level
than in years past.
In her opening remarks Proyecto Visión project director Kathy Martinez said, "This is
probably the largest gathering of Latinos with disabilities in the history of the Disability
Rights Movement." Martinez is excited about the growing participation of job seekers
and advocates from the Latino community. "Latinos with disabilities are often isolated.
This makes us hard to find. The increased involvement of disabled Latino job seekers and
disabled Latino advocates in the conference will increase the event's impact on
employment opportunities available for disabled Latinos."
Two and one-half days of conference workshops were presented in English with
simultaneous translation into Spanish. Disabled Latino role models participated as
speakers in many sessions including 'Success Stories & Employment: Personal Stories
from Latinos with Disabilities who are Employed,' 'How to Start a Small Business' and
'Understanding and Addressing Barriers to Employment.'
This year's event included an evening of entertainment and culture that allowed attendees
to network in an informal setting. Conference participants enjoyed dinner and a show of
traditional regional dances from Mexico. The dances were performed by a local folkloric
dance group made up of Latinos with and without disabilities. The dancing was followed
by performances by artists who impersonated famous Latina vocalists, and a disc jockey
who provided musical accompaniment including Salsa and Cumbia.
The annual conference has been developed as one of the main activities of Proyecto
Visión, based in Oakland, CA, funded by the Rehabilitation Services Administration. It
serves as a forum for information exchange and coalition building among the growing
number of projects, government agencies and groups addressing the needs of disabled
Latinos. The event was greatly enriched by the collaboration of the Committee for the
Integration of Latinos with Disabilities, Access Living of Metropolitan Chicago and
Rehabilitation International. A full report on the conference will be published on the
project's website, www.proyectovision.net.
Other project activities include a bilingual toll-free hotline [(866) 367-5361], website,
newsletter and listserv for information, referrals and news about Latinos with disabilities
and employment. Proyecto Visión has partners located around the country including
Access Living of Metropolitan Chicago, the Central Coast Center for Independent Living
in Salinas, CA, the Harlem Independent Living Center in Harlem, NY and Rehabilitation
International in New York City, NY.
Contact Project Director Kathy Martinez for additional details at (510) 251-4326 or
kathy@wid.org.
Research Brief: Rural Economic Development: Worker
Cooperatives and Employment of People with
Disabilities
By Cindy Higgins, Research Information for Independent Living Project
Attracting large employers to communities with tax relief, infrastructure
accommodations, and other short-term sacrifices has a mixed track record for providing
jobs for rural residents. That's not the kind of news that rural communities need when so
many of these communities have such high unemployment in comparison to more urban
areas. Unemployment is even greater for the rural residents who have a severe disability
or one that interferes with the ability to work.
According to researchers Chuck Sperry, Joyce Brusin and Tom Seekins, in a report for
The Rehabilitation Research and Training Center on Rural Rehabilitation Services, to
reduce unemployment, there has been a push for community self-help as a way to use the
potential of unemployed workers with disabilities. A worker cooperative is one form of
employment self-help. In a worker cooperative, workers own and manage their own forprofit business. Its function is to be a stable source of employment for its memberowners. The cooperative requires membership, labor payment, and distribution of surplus
funds. More skilled and ambitious employees get a larger annual share of profits for
rewards.
This form of association is not new, particularly in the agricultural community.
Historically, worker cooperatives do best when those involved have social, political, or
economic distress. History also shows that this form of organization can be stable and
socially responsible. Worker-members have a vested interest in running a solid company,
community welfare, and individual economic gain. Two other types of worker ownership
companies are employee stock ownership in which more than 50% of employees own the
company or when employees have equal ownership in a company. Ownership in these
two examples gives employees a financial stake in the company but not an equal say in
daily operations.
Sperry, Brusin, and Seekins cite samples of these worker cooperatives to include
bakeries, offset printing companies, electrical contracting, child care, clothing
manufacturing, bookstores, and others. People with disabilities who have started their
own businesses, not necessarily worker cooperatives, in rural communities have operated
companies doing home inspections, desktop publishing, lawn care, glass installation,
automotive body repair, welding, commercial fishing, and sales.
For more information contact authors at the Rehabilitation Research and Training Center
on Rural Rehabilitation Services, The University of Montana, 32 Campus Drive,
Missoula, MT 59812-7056, (888) 268-2743. This research was supported by the National
Institute on Disability and Rehabilitation Research in the U.S. Department of Education.
How Disabled People Manage In The British
Workplace
This paper was conducted on behalf of the Joseph Rowntree Foundation
Research on disabled people and employment has previously focused on the barriers to
getting and keeping work, the connection between work and benefits, or policy analysis
of rehabilitation, workplace disability management and retaining people in work. Little
attention has been paid to how disabled people who are in employment manage to survive
or indeed thrive in the workplace. This study by Alan Roulstone, Lorraine Gradwell, Jeni
Price and Lesley Child explored the strategies used by disabled workers to get by in the
workplace, and looked at the nature and role of support received by disabled workers.
The research found that:
Disabled workers used a diverse and often complex range of strategies to thrive and
survive in the workplace. There was no universally beneficial strategy that could be
applied by all disabled workers. What worked for one disabled worker may be unhelpful
or even risky in a different workplace.
Strategies used most often included being assertive but not aggressive in asking for
support, and being open about impairment, disability and barriers. In addition, a wide
range of supports were used, such as moral and financial support, empathy, 'give and
take', and mutual support and advice.
A number of disabled workers felt that using strategies gradually was successful, because
understanding the organization first helped to develop suitable strategies.
Disabled workers needed gradual strategies in order to understand employment
environments, management styles, personnel changes, corporate priorities and
impairment changes.
Formal and informal support, both past and present and also both inside and outside
work, was central to disabled workers' survival and their enjoyment of work. Informal or
unwritten support within work was particularly important for disabled workers.
Major sources of support mentioned were colleagues, Jobcentre Plus 'Access to Work'
provision, family and friends, employers and managers, organizations of and for disabled
people, and trade unions.
The researchers conclude that much still needs to be done to understand and respond
systematically to disabled workers' needs. Despite their existing strategies and support,
disabled workers want access to more structured, formalized and appropriate support.
Introduction
Previous research has established that working-age disabled people are significantly more
likely than non-disabled people to be unemployed or under-employed. Since 1997, the
Labour Government has emphasized welfare through work and the idea of social
inclusion as being achieved through paid work.
This study explored how working disabled people get by at work. It used a national
survey plus interviews and focus groups to examine how working disabled people
manage in the workplace, and how they survive or thrive at work. The study quickly
established the importance of strategies and support.
Strategies were defined as those ideas, decisions and plans adopted by disabled people in
order to get on better at work. They were seen as ways of getting more out of work by
making it more accessible and inclusive, and thus more likely for work tasks to be
completed.
Formal and informal support from both inside and outside the workplace was important.
Support was defined as schemes, actions, financial benefits or work changes that did not
stem from the individual disabled worker. These mechanisms provided emotional, moral,
practical, financial, technical, environmental and organizational support.
Key Strategies
The following were some of the most important strategies used by the participants in the
study in order to get on better at work.
Being assertive:
Asserting your needs as a disabled worker (without being too aggressive) was noted by a
number of participants.
"There is a danger of the disabled person ... ending up the passive victim of other people's
... attitudes. I believe very strongly that part of what disabled people have to do is
empower ourselves. Equality is never going to be given to us. We have to assert it in a
way that is positive, to be assertive and not aggressive."
This assertiveness usually took the form of workers asking for what they needed, but
sometimes was about resisting job changes or unwanted developments, including
promotions.
"... at the time of my appraisals she [the manager] did actually ask me if I wanted to
become a property manager and I said 'no', and the reason I said no was ... you had to go
round and visit the properties, which was not a practical thing for me to do."
Being open:
Another commonly used strategy was being open about impairment, disability and
barriers at work. The need to be open was important, as it allowed a fuller understanding
of workplace challenges.
"I couldn't work in a job where I wasn't accepted for what I am ... I don't always handle
things 100% well, but I do have a mental health history that sometimes I need things that
are not conventional."
Using information and communications technology:
Information and communications technology was seen as improving working life for
some disabled workers. This included new, computer-based technologies as well as
established technologies such as telephones and faxes. A worker with a visual
impairment commented on his use of the telephone:
"I use a telephone more than other people do ... maybe it actually puts me at a slight
advantage. I don't always pick up on conversational cues and therefore I will leap in. But
on the telephone we are very much working on audio cues and therefore that evens things
out."
Taking things slowly:
A small number of disabled workers felt it was better for them to adopt a gradual but
planned strategy. They saw it as important not to be too precipitate in asking for
workplace changes but to build up workplace relations before asking. This helped them
understand employment environments, management styles, personnel changes, corporate
priorities and impairment changes:
"Well if I was starting a new job I think I'd try to be as independent as I could for a start,
however hard it was, then I think people would start offering to do things for you if they
can see the things you are struggling with, or if you actually have to ask, would you mind
doing this for me, then I think that would probably find its own level."
Supporting disabled workers:
Support was vital to disabled workers. Some support came unprompted, over time and
often at no cost. Support came from both inside and outside work, and could be formal or
informal.
Moral and financial support:
This type of support was usually provided by friends and family, sometimes before taking
up the current employment. The following is what a worker with a learning difficulty said
about the support provided by his father:
"He gives me a certain amount each month ... he's generously paid for a computer that I
now use ... at home ... because it was clear I had to learn how to use a computer for the
work that I do here, so it was to help me with work here and to gain confidence using a
computer generally."
Empathy:
Empathy was most commonly found among other disabled people, particularly
colleagues. Empathy and acceptance of difference were seen as very important. A worker
with a learning difficulty provided an example of this:
"Everybody said that the Forum [an organization of disabled people] was definitely
needed and the reason is for solidarity. Basically as individuals it's very easy for society
to put us down, and it's only when we are together working collectively that we get the
strength to say 'no'."
'Give and take':
This approach to support was used most often with colleagues. Mutual support and
advice are important for all workers, but disabled workers felt that it was crucial in their
daily work. One worker noted that he was given leeway about completing some tasks,
and made up for it when he felt able to:
"If they pick up on that I'm not feeling 100% they'll say 'take your time, do what you
want to, you don't have to knock yourself out'."
'Access to Work':
A key type of formal support reported by disabled workers was the 'Access to Work'
scheme operated by Jobcentre Plus. There were problems in the speed and consistency of
provision, but nevertheless the scheme played a key role in workplace support.
"For example, the office that I have at the moment had sash windows in it, which I can't
use, and the university has replaced them with a window which opens and closes by
turning a little handle. It collaborates with the 'Access to Work' people ... they've
provided me with a computer that I use at home."
Support outside work:
As well as support at work, some disabled workers looked outside for help or advice.
This assistance ranged from drawing on the moral support of friends and family to
seeking ergonomic, technological, medical and psychological support.
"I have always needed to have ... not exactly deaf support ... I have always managed to
find a group of people or it might be at home, partners, friends who actually nourish me
as a whole person and that has been quite an important strategy."
Conclusion
These brief insights into the strategies and support mechanisms which allow disabled
people to survive and thrive at work could help to inform and improve employment
practice and support services. Some key practice and policy lessons also came out of the
study.
Disabled workers adopted a sometimes complex range of strategies. Although there was
no single strategy that all disabled people could identify, some recurring messages came
from the research. The work context and culture, length of time in the workplace and the
presence of other disabled workers were all important factors in deciding on how to make
the most of work.
Disabled workers used a very wide range of gradual and non-predictable support. This
makes such support difficult to formalize or reproduce. Much support was the result of
unwritten 'custom and practice' which sat between formal and informal support.
However, it was clear from the study that there is scope for greater and more systematic
support.
It was felt that policy-makers, particularly the Department for Work and Pensions along
with the Jobcentre Plus agency, should be aware of the pivotal role of the 'Access to
Work' scheme for disabled workers. However, despite its key importance, most users
noted weaknesses in this scheme. These included delays in assessment and provision,
lack of knowledge and skills concerning a range of impairments and barriers, difficulties
in establishing funding partnerships, and the limits of personal assistance provision.
The researchers conclude that the study has implications for employers, employers'
forums and trade unions. Employers should be aware that, despite strategies and support,
disabled workers want access to more structured and formalized support. There is still a
long way to go in understanding and responding systematically to disabled workers'
needs. Trade unions, although mentioned by a small number of workers in the study,
were seen as the final rather than the first option in seeking support.
Messages
For disabled workers:
• Be assertive not aggressive;
• Accept yourself for who you are;
• Be confident in asking for support;
• Be informed about your rights;
• Be open and up front.
For colleagues of disabled workers:
• Do not make assumptions about disabled workers;
• Be supportive but not overbearing;
• Attend disability equality training.
For employers and managers:
• Disabled people are not a 'special case';
• Ask disabled workers if their needs are being met;
• Be aware of and allow flexible working;
• Encourage mutual respect among workers;
• Be well informed about support options.
For Jobcentre Plus:
• Be better informed about the range of disabled workers' needs;
• Be consistent and equitable in provision;
• Be responsive and flexible;
• Share the experiences of the users of 'Access to Work';
• Look at more impartial means of support.
About the project
The research was undertaken through Breakthrough UK Ltd and completed in October
2002 by a commissioned project team of four disabled people: Alan Roulstone
(University of Sunderland), Lorraine Gradwell (Breakthrough UK, Manchester), Jeni
Price (Equality Associates, Brighton) and Lesley Child (freelance).
The study used a national screening survey of strategies and support, which included
workers with physical and sensory impairments and also people with mental health
problems and learning difficulties. This was followed by interviews and focus groups
with 33 disabled workers. Access issues were discussed at all key stages of the research,
and different ways of working were offered to facilitate full participation in the study.
The study aimed to place the voices of disabled workers at the heart of the research
findings.
The Joseph Rowntree Foundation (JRF) is an independent, non-political body which
supports projects as part of its program of research and innovative development. It hopes
that the results will be of value to policy-makers and practitioners.
There's Room At The Top For Workers With
Disabilities: Canadian research shows union
membership and gender are key factors
Some workers with disabilities are finding their way to the top rungs of the earnings
ladder - but being male and unionized seem to be key requirements for such success. The
Canadian Council on Social Development (CCSD) finds that more than 40% of male
workers with disabilities who are covered by a collective agreement earn salaries in the
top quarter of the earnings range. In fact, male workers with disabilities have fairly
similar earnings profiles to their non-disabled counterparts as long as they are covered by
a collective agreement.
"These results suggest that unions help to level the playing field for male workers with
disabilities" says CCSD Senior Researcher Gail Fawcett, who conducted the research.
"But unionized women with disabilities lag far behind. Certainly, unionization appears to
pull them out of the really low levels of earnings, but few of them make it to the upper
income brackets. And non-unionized workers with disabilities of both genders still lag
behind their counterparts without disabilities, with women being particularly
disadvantaged."
Among women with disabilities covered by a collective agreement, the majority still earn
salaries in the bottom two quarters, with less than 20% earning salaries in the top quarter.
Among the estimated 3.6 million Canadians with some form of physical or mental
disability, the majority still earn wages below the median.
The federal government has recently announced another "multilateral framework
agreement" to improve the employment situation of people with disabilities. Fawcett
would like to see some concrete commitments.
"A few ramps aren't going to do the trick. Helping people get their high school and postsecondary education is crucial - because education has a great impact on the salaries of
persons with disabilities. Finding ways to enhance the workplace rights of people with
disabilities would help as well. I was happy to see that the federal Pay Equity Task Force
has incorporated the CCSD's recommendation that the new federal pay equity legislation
should apply to persons with disabilities."
Acknowledging the real struggles of people with disabilities is the first step. Fawcett's
information sheets point out that working-age Canadians with disabilities are more than
twice as likely as their counterparts without disabilities to suffer from additional health
problems such as heart disease, high blood pressure, asthma, arthritis, diabetes and
migraines.
"This means Canada's struggling health system needs to get in gear to provide for their
needs, especially in the territories, where less than 60% of people with disabilities have a
regular doctor," says Fawcett. She adds that in areas such as Montreal and the Lac St Jean
area of Quebec, people with disabilities are also less likely than the norm to have a
regular doctor.
These Disability Research Information Sheets are part of an ongoing series begun by Gail
Fawcett in 2001. The Canadian Council on Social Development (CCSD) is an
independent, national, non-profit organization focusing on issues of social and economic
security.
Canadian Council on Social Development
309 Cooper Street, 5th Floor
Ottawa, Ontario, K2P 0G5
Tel: (613) 236-8977
Fax: (613) 236-2750
Web: www.ccsd.ca
Email: council@ccsd.ca
Meeting Compares Approaches to Disability Benefits in
Nine Nations
By Monroe Berkowitz (berkowi@rci.rutgers.edu)
On July 21-22, 2004, researchers, policy makers and members of the disability
community gathered in Washington, D.C. to attend a meeting on the "Learning from
Others" project, which surveyed the temporary and partial disability benefits program in
eight countries and the United States. The meeting covered the results of the survey and
allowed for discussion of its implications on the future of social disability insurance.
Preliminary results of study presented
The project represents a collaborative effort between the Program for Disability Research
(PDR) at Rutgers, The State University of New Jersey, and Rehabilitation International, a
non-profit organization comprised of more than 200 national rehabilitation and disability
organizations in over 80 different countries. With their help, one or more representatives
was chosen from each of nine participating countries to assist in gathering data about the
disability programs offered in their countries. The data collection process asked such
questions as: who is covered by these programs? What terms are used to define
temporary, short-term and disability itself? How are such programs administered? How is
disability verified or certified? How is the program financed? Does the program involve a
research component?
U.S. system contrasted with others that pay temporary and/or partial benefits
The objective in collecting this information is to learn more about international systems
of temporary, short-term and partial disability benefits and how such systems might be
adapted to work in the United States' domestic disability program. Presently, the US is
one of the few countries in the world with a social insurance disability program that pays
benefits only to persons who are totally and permanently disabled. In order to qualify,
applicants must demonstrate that their conditions will last for an indefinite period of time
or will result in death. Benefits, once granted, continue until the person reaches age 65
and transfers to old-age benefits, medically recovers or returns to work.
In sharp contrast, programs in other countries often pay benefits for so-called short-term
disabilities or pay benefits on a partial basis. According to these programs, a person need
not be totally disabled to claim benefits, but may receive a partial benefit as a percentage
of what they would receive should they be judged to have a total disability.
Initial report presented to RI World Congress in Oslo
The initial reports on the project were presented at the Rehabilitation World Congress
2004 held in Oslo Norway on June 21-23. Todd Honeycutt, research analyst with the
Program for Disability Research, presented a summary of the project results, and
representatives of three of the participating countries spoke on the disability benefits in
their countries: Akira Terashima of Japan, Heini Möller of Sweden and Tone Mørk of
Norway. This took place at a parallel academic session, which was very well attended.
The audience expressed a great deal of interest in the work of the researchers.
After the reception in Norway, the PDR hoped for an equally enthusiastic response to a
planned meeting in Washington, D.C. The event, held July 21-22, 2004 at the Grand
Hyatt Washington Hotel, drew approximately 50 invited attendees from throughout the
disability community. Representatives from eight of the nine surveyed countries attended,
along with those from the United States Social Security Administration, US policy
makers, and other members of the disability community. This made for an interesting mix
of experience and opinion and facilitated discussion among those interested in the
project.
The meeting began with a welcoming reception on Wednesday afternoon. Staff of the
PDR and RI gathered to meet with our international guests and other attendees in a
relaxed atmosphere. Guests took advantage of the opportunity to network and compare
ideas before the work of the meeting began in earnest.
Martin Gerry, Deputy Commissioner of SSA, opens meeting
Thursday's meeting sessions began at 9 A.M. with opening remarks from Martin Gerry,
Deputy Commissioner of the Office of Disability and Income Security Programs of SSA;
Tomas Lagerwall, Secretary General of Rehabilitation International; Tanya Gallagher of
the Disability Research Institute based in Illinois; and Monroe Berkowitz of the PDR.
The speakers all expressed their excitement over the opportunity to learn from the data
collected in this project, and to share opinions and ideas with such a valuable community
of peers.
Four panel discussions
The bulk of the day was divided into four panel discussions on various aspects of the
international disability picture. Panel Discussion #1 focused on Permanent Partial
Disability Benefits. Moderated by David Dean of the University of Richmond, the panel
featured Rienk Prins of the AS/tri research firm in the Netherlands, Chikako Kohyama of
Japan's National Organization for Employment of Elderly and Disabled Persons, and Stig
Larsson representing the HAREC disability research center in Sweden. Dr. Dean began
with a summary of the findings on the systems and effects of partial disability systems.
These included the ways in which disability and eligibility for benefits are determined in
each country, as well as the effect of partial benefits programs on work force
participation. The national representatives then followed up by presenting an overall
picture of the disability benefits programs in their respective countries, and time was
given for questions and answers.
Sickness and short-term disability benefits
The meeting took a short break before proceeding to Panel Discussion #2 on Sickness
and Short-Term Disability Benefits. Todd Honeycutt of the PDR moderated this session,
introducing the audience to the definition of short term and sickness benefits used in this
project. He discussed the prevalence of such programs and the rates at which they are
utilized and covered the various sources of funding used to pay for them, be they social
programs or privately financed. He also presented information on the movements toward
change in these systems. The moderator's presentation was followed by national
summaries of systems change from Prof. Leslie Swartz of the University of Stellenbosch,
South Africa and Tone Mørk of the National Insurance Administration of Norway. Ms.
Mork's presentation also touched on the fascinating issues involving reintegration of
benefits recipients with the work force. As a final note in the second session, Ilene
Zeitzer of Disability Policy Solutions in the US presented a comparison of international
systems of sickness benefits as well as summarizing the challenges and benefits of such
programs.
Time-limited benefits
After lunch, the meeting moved on to Panel Discussion #3 on Time-Limited Disability
Benefits. Moderator Sophie Mitra of the PDR introduced the concept of time-limited
benefits in both youth assistance programs and national disability benefits programs and
shared the findings on this topic from those participating countries that offer these
benefits. Following this introduction, Heini Möller of Sweden's National Social Insurance
Board presented an overview of the Swedish disability system focused on its activity and
sickness programs. Hartmut Haines of the German Federal Ministry of Health and Social
Security then offered insight into the German system, and the session concluded with
more questions and discussions from the audience.
Future of disability benefits
In the day's final session, Panel Discussion #4 turned the attention to the Future of
Disability Benefits. Monroe Berkowitz opened the session with his view of the subject,
remarking on the evolution of the United States' disability benefits system to its present
state and pointing out the challenges it currently faces. He touched on some of the efforts
to address these issues, such as the Early Intervention project that SSA and the PDR are
developing as a way to divert disability benefits applicants away from the rolls and back
to the work force, but he also acknowledged the possibility of many possible strategies
for correcting the problems in the existing system. His presentation focused on the need
for policy makers and society itself to break the link between the term "disability" and the
concept of an inability to work. Patricia Thornton, disability employment researcher
based in the United Kingdom, followed with a British perspective on the issue and
researcher Akira Terashima of Urawa University in Japan made the final presentation on
the future of disability benefits in Japan. He illustrated the move from a measure-oriented
system to a user-oriented system and discussed specifically the issue of whether to
connect the award of benefits to rehabilitation or employment.
At the end of the program, attendees expressed appreciation for the opportunity to share
this vital information and to open discussion on the lessons each participant nation has to
learn from the experiences of the others. The Learning from Others project served as a
catalyst to earnest investigation and discussion of the issues involved in social disability
insurance programs and has raised additional questions worthy of further study.
Ethical Management of Disability and Employment (La
Gestión Ética frente a la Discapacidad y el Empleo):
Book Published in Spain
By Carmen Vila, Madrid - May 3, 2004 Solidaridad Digital
The Foundation of the Organization of the Blind of Spain (Fundación ONCE) and the
Association of Users of Prosthetics and Technical Aids (Asociación de Usuarios de
Prótesis y Ayudas Técnicas, AUPA) have just published a book on the ethical conduct
toward disability and its repercussions within business and professional settings,
including civic organizations, public institutions, universities...
One of the purposes of this book is to demonstrate to what extent the achievement of an
ethical objective, generating jobs for workers with disabilities, is not contradictory with
generating profits for stockholders. The other purpose is to demonstrate that hiring
persons with disabilities does note have a negative impact on corporate results.
The seven chapters of the book cover the disability and employment challenges and
advantages, also a description of the INSERTA PLAN and an analysis of the potential
investors.
This book also comments on two projects. One is called Snacks de Castilla y Leon, S.A.
and the other is the MRW project. Both work under an agreement with INSERTA and
both include hiring of persons with disabilities.
The results from these experiences may be used for other business projects. It was
demonstrated that profits were higher when workers with disabilities were hired. These
type of projects usually qualify for benefits offered by government and the accompanying
corporate social responsibility.
About Myself: a blind man describes his life in
Bangladesh
By Vashkar Bhattachearjee (vashkar79@hotmail.com)
My personal history
My name is Vashkar Bhattachearjee from Chittagong, Bangladesh. I was born in a village
on the 1st of July, 1979. My father is a government employee. My mother is a housewife.
I have one brother.
My job
I do not have job yet! I am an unemployed visually impaired person from Bangladesh. It
is a dream for visually impaired persons to get job in Bangladesh. Very few blind persons
can get an education. If they do, technolgical knowledge, such as computers, is not
included. Because of this, they face a lot of obstacles in their daily lives. On the other
hand, we need proper training that can increase capability of people with disabilities. We
do not get proper information from various corner but I am lucky that I can access the
internet and E-mail.
I worked as a volunteer for the Rotary Club, (past President Rotaract Club of Islamabad,
district 3280, Bangladesh). I am a life member of CLASS, that is, Children Luchemia
Assistance Support and Service. I am also the secretary of the Chittergong Association of
the Blind, but it is no longer very active.
My academic career
I graduated with honours in history from Chittagong University and I appeared in the
examination in General History. Before that, I studied at a normal high school in
Chittagong.
Problems encountered
My family didn't know where I should go to school, because people in Bangladesh think
that blind people can do nothing. Most people think that it is impossible for a blind
person to get an education. My family was very frustrated. My father heard from an eye
doctor that there was a primary school for the blind in Chittagong, and I was admitted to
that school. After leaving that primary school, I attended a junior high school for sighted
children. It was very hard for me, because there were no Braille books, and the teachers
did not know how to teach blind children. After leaving junior high school, I also went to
a high school for sighted students. After leaving the primary school for the blind and
entering mainstream education, I discovered that there was a lack of facilities for blind
people. At junior high and high school, there were no Braille books, very few writing
frames and Braille paper.
After leaving high school, I tried to enter many universities, but they all refused my
application because of my blindness. Therefore, some other blind applicants and I began
a hunger strike. Suddenly, the university decided to let us enter, but again there were no
facilities. The university teachers didn't know anything about Braille or how to teach
blind students. Some of the teachers cooperated with us, but some did not. For example,
one day in class I was taking notes on my Braille slate, but the teacher thought I was
playing. He told me to stop playing, stand up and leave the room. I complained to the
head of the department, and I showed the teacher who had asked me to leave his class
that I had actually been taking notes, not playing. He was very surprised when I read my
Braille notes to him. He thought it was like magic.
An example of a problem I faced is when I invited a govermnent high official to a
seminar about white cane safety day. When I entered his office, he gave me some money
and didn't talk to me. This is because he thought that blind people are beggars. After he'd
given me the money, I was very shocked, and I could not stop my tears. I gave my
invitation letter to him, and suddenly he realized what he had done. He apologized, and
eventually came to the seminar, and said that he had come to learn about visually
impaired people.
When and how did i lose my eyesight?
After birth, there were no hospitals or doctors in my village. I bled from my nose and
mouth. My family did not do anything. When I was two years old, my family realized
that I was blind, and their dreams about my future were shattered.
What is the most popular job among blind people in Bangladesh?
This is a difficult question to answer. Very few blind people in Bangladesh have a job.
Most of them are still begging in the road. Some of the blind people who have jobs work
as teachers in schools for the blind, as lawyers, or in NGOs. Even if a blind person
receives a university education, it is often very difficult for him to find a job.
Training in Japan
1. I was selected for one-year training course (from August'01 to July'02) named 4th
Duskin Leadership Training in Japan (A Program for Persons with Disabilities in
Asia-Pacific Region) and obtained training on Computer & Information Technology
for Persons with Visually Impaired.
2. Japanese Braille System.
3. Daisy (Digital Accessible Information SYstem).
4. Japanese Blind School System.
5. Japanese Braille Library System.
6. Japanese Language & Braille.
7. Sheltered Workshop.
8. Leadership Training.
Training in Thailand
I got one week Duskin Follow-up Training in Bangkok about project Management and
Capacity Building.
Conduct of Workshop & Paper Presentation
Returning from Japan I have arranged a Workshop on IT Technology and its Application
in the field of Visually Impairment in association with UTSA (United Theatre for Social
Action) in October, 2003 at Chittagong.
Outstanding Social Activities
1. I joined to the Rotaract Club of Islamabad, Chittagong (Sponsored by the Rotary Club
of Islamabad 3280) in 1997 and have been serving as best as I can since I joined the
Club.
2. Selected as "the Best Secretary" among the 153 Rotaract Clubs in Bangladesh.
3. My Club was awarded & honoured 3 times as the best Club in Bangladesh.
4. Selected & Elected as "resident" of the Club in 2001-2002 Rota-Year.
5. Honoured many times in recognition of my outstanding activities as "Social Activist."
Training & Participation of Workshops, Seminars & Symposiums
As I am deeply involved in social activities as Social Activities and being in contact with
the Rotaract Club of Islamabad I have an opportunity to participate innumerable
Seminars, Symposiums & Workshops and awarded certificates.
Languages known
I have fluency both in English and Japanese languages.
My hobbies
I like to meet and make friends with many different people. I like singing and dancing. I
am a member of a musical group composed entirely of blind people in my country. Since
coming to Japan, I have become very interested in Japanese language and culture, and I
am eager to learn more. I would love to return to Japan one day.
My opinion about the Japanese life.
I had started a new life in Japan. Japan is a wonderful country. They have an fascinating
culture. This country seems very convenient for disabled people. People are extremely
kind, especially women and girls. I have learned many new things from Japan, for
example, how to use computers. This is the most exciting thing for me, because I had
never used a computer before coming to Japan. I never even imagined that blind people
could use computers. The Japanese lifestyle seems very different from our lifestyle in
Bangladesh. For instance, going to the ofuro together. Also, people seem very busy with
their jobs, and don't seem to spend much time with their families. I am very interested in
Japanese houses, for example, tatami rooms. We don't have tatami rooms in Bangladesh.
Before entering the house, Japanese always remove there shoes. We in Bangladesh also
do this.
My future dream
I visited to Japan with many hopes and dreams. I've been studying hard to achieve my
goals. Did you know that in my country we have no Braille libraries? Because of this, I
have been studying how to set up a Braille library at the moujin bunka sentaa and the
Japan Braille Library. I hope to set up a Braille library in Bangladesh one day. I also want
to start a center for the blind where people can learn about Bangladeshi culture, receive
education, and study how to use computers. I think that reading, writing, and finding
information by computer are vital tools for blind people to live independently. Of course,
they cannot afford to buy a computer, but they could come to my center and use a
computer freely. For this reason, I need to learn much more, and I would like to
cooperate with many organizations and individuals to achieve this dream.
I would like to give you some information about visually impaired people in my country.
In Bangladesh we have 130 million people. Ten percent are disabled. 1.2 million people
are blind. However, only 1 per cent of blind people are educated. Life for girls is
especially difficult, because they have no chance to marry, find a job or receive an
education. Most blind people come from very poor families. We don't have any good
advocacy organizations for blind people which could campaign for our rights. Now,
disabled people's organizations are gaining strength, but blind people's organizations are
not included. many organizations work in Bangladesh, of course, but they do not seem to
think about blind people. I don't know if the World Blind Union is thinking about
Bangladesh. However, at the Osaka Blind Summit, there was no representative from
Bangladesh, so I asked many questions to the WBU president on behalf of Bangladeshi
blind people. I would like to appeal now to all of you visually impaired people. Now is
the time to help the visually impaired in Bangladesh.
My email is vashkar79@hotmail.com and my web site is www.vashkar.tk
Governance & Legislation
Towards Demystifying the African Decade of Persons
with Disabilities, 1999-2009
By Phitalis Were Masakhw, Kenya
On 12 August 2004, a two-member team from the African Decade of Persons with
Disabilities secretariat in Cape Town, South Africa was in Nairobi. The team led by
Thomas Ongolo, himself a Kenyan, was on a review and study mission on how far Kenya
had performed with regards to the African Decade National Action Plan. The team met
and held frank and extensive discussions with the Kenya National Steering Committee
for the Decade. Kenya has made substantive progress in the realization of the decade
objectives and aspirations. Of course a lot still remains to be done.
The review meeting noted that: (1) Kenya had enacted the Persons with Disabilities Act
2003, (2) progress on getting a new Disability Policy and National Disability Survey
conducted were in top gear, (3) government funding and allocation to the disability sector
had dramatically increased especially through the Ministry of Education in the current
financial year, and (4) for the first time in the history of Kenya, there was profound
goodwill, commitment and political leadership in support of the disability cause.
But, it was also noted that: (5) awareness of the African Decade and the national action
plan particularly at the grassroot level was minimal, (6) the current constitutional review
process was bogging down Kenyan efforts at completing the policy and legal reform
process in favour of the disabled population, (7) despite the prevailing political goodwill
from the government, no significant appointments of people with disabilities in key state
organs of planning and decision-making have been made, (8) Kenya still lacks a
comprehensive monitoring and evaluation plan for the decade and (9) despite the
development in 2004 of a good national action plan of the decade, no concrete strategy
exists for the mobilization of the massive resources required for its implementation.
It was also evident that development partners have not shown much enthusiasm for the
action plan. We haven't seen their commitment or indication that they will support it.
Clearly, the lives of disabled persons remain largely the same, despite the development of
the Nation Plan of Action early this year. Nothing dramatic has changed! Indeed, the
demystification of the decade and support for its dream and spirit and its internalization
by all the relevant actors need to be intensified. Not just in Kenya but across Africa. The
unpacking and popularization of the decade across Africa is a cardinal responsibility of
African Governments in particular and the African Union leadership in general.
A little history about the African decade of persons with disabilities
Disabled people's organisations (DPOs), in collaboration with the OAU held a number of
meetings at which the idea of having an African Decade was discussed. Extensive
consultations were carried out between DPOs, non-governmental organisations, UN
agencies, the African Rehabilitation Institute (ARI), governments and other stakeholders.
The African Decade of Persons with Disabilities (1999 - 2009) is the result of a
recommendation made by the Labour and Social Affairs Commission of the Organisation
of African Unity (OAU) during its 22 nd Session in April 1999 in Windhoek, Namibia
and adopted by the 35 th Session of the OAU Assembly of Heads of State and
Government held in Algeria in July 1999. A formal Declaration of the Decade was
subsequently adopted by the 36 th Session of the OAU Heads of State and Governments
in Lome, Togo in July 2000.
Responsibility for organisation and monitoring of states' progress in the implementation
of the Decade was given to the least resourced African Rehabilitation Institute (ARI), a
specialized agency of OAU and now AU, headquartered in Harare, Zimbabwe. ARI has
regional offices located in Dakar, Senegal for West Africa, Brazzaville, Congo for
Central Africa and Harare for Southern Africa. ARI shares this responsibility and is
supposed to collaborate in the planning and execution of Decade activities with DPOs, in
particular the Pan African Federation of Disabled Persons (PAFOD), the African Union
of the Blind (AFUB) and governments and other regional organisations of persons with
disabilities. Courtesy of the South African government, the African Decade of Persons
with Disabilities now has a secretariat in Cape Town, South Africa.
It is worth noting that many African states have not matched South African's efforts, have
so far made no commitments to provide financial support to the implementation of the
African Decade; thus five (5) years have passed without implementation of any program
of activities due to lack of resources. So why did they proclaim the Decade in the first
place? Why for instance hasn't the AU appointed a goodwill Ambassador for the Decade?
What about member states at national levels?
A catalyst, not a panacea
The goal of the Decade is the full participation, equality and empowerment of people
with disabilities in Africa. But it's important to realize that the African Decade is not and
can't be a panacea to all the needs and concerns of Africans with Disabilities. It is not a
miracle project for these populations. It is not a stand-alone initiative. The African
Decade of the Disabled Persons is only meant to ignite and galvanize more interest in the
disability cause. To give greater impetus, focus, action and reflection on the cause of total
inclusion. To catalyze the process of disability mainstreaming and empowerment of the
disabled population in Africa. To put disability and the concerns of the disabled within
the development and human rights paradigm. To hasten and quicken the
intellectualization of the disability question, to give it weight as a serious African issue, a
major African subject. But more importantly, for the African leadership to prioritize it in
all major initiatives to re-engineer the African Continent. A Disability Renaissance of
sorts!
African Decade should be about inclusive efforts and attitudes
In black and white, the decade is about all the little initiatives that we should undertake
aimed at inclusion. It is about efforts we should put in to have not only, a safe public
transport policy, but also a disability friendly and facilitative one, for instance. It is also
about our thinking, perceptions and attitudes towards those with disabilities. The African
decade is not a parallel or rival program or a reinvention of the wheel for the disabled. It
is also about a local chief or councillor embracing it and making it part of his/her public
education and sensitization agenda.
The African Decade is about Public Health specialists reflecting on and including the
concerns of the disabled in the HIV/AIDS, malaria, sexual reproductive health initiatives
and design and construction of public utilities. Folks, it's about engineers and designers of
the physical environment including housing, thinking about these populations in their
public works. It is about making sure that our schools have room for children with special
needs. It is an "all about us all" approach, and not a "them and us" issue.
Development partners and NGOs like talking about capacity building and advocacy. The
African Decade reminds them of the existence of the disabled population. It serves to
remind them of the numerous capacity needs of the disabled population, and their lobbies
and groups; and invites them to participate in addressing these needs. Are the
development partners, the so-called human rights watchdogs and other NGOs reading
this? The private sector, the media, the church, ordinary folks, presidents, members of
parliament, all have a responsibility to make a difference
The African Decade just as the United Nations Day of Disabled Persons is a reminder
that people with disabilities exist amidst us. And by the way, who is disabled? If you fail
to see the person, but only the disability, then who is blind? If you cannot hear your
brother's cry for justice, who is deaf? If you do not communicate with your sister, but
separate her from you, who is disabled? If your heart or mind does not reach out to your
neighbour, who has the mental handicap? If you do not stand up for the rights of all
persons, who is the cripple? Ladies and gentlemen, your attitude towards persons with
disabilities may be their biggest handicap and yours too!
As William Shakespeare said in the "Twelfth Night", in nature there's no blemish but the
mind; none can be called deformed but the unkind". That is all that the African Decade
invites you to reflect upon, to think about and to act on.
The writer has a physical disability and can be reached online: phitalisw@amrefke.org
The Disability Situation in Nepal
By Meen Raj Panthi (meenrajp@actionaidnepal.org)
Nepali society still views disability as a penance to the sins committed in previous births.
The people with disabilities pare treated worst as an object of pity. People with
disabilities are hided as the matter of social prestigious by families is still practiced
largely. The notion that people with disabilities have equal rights and duty as any other
individual, is largely absent from the popular mindset.
In accordance with a latest study conducted by New Era's 70.1 percent of the persons
with disabilities have stigma and difficulties to live in the community with self-respect.
There is no comprehensive data on disability in Nepal. Even the number of people with
disabilities varies according to sources.
As per the estimation 7-10 percent of the total population in Nepal are the people with
disabilities in one form or in other way. Five categories of the people with disabilities:
visually impaired, hearing impaired, physically disabled, mentally retired and mentally
disordered are recognised by the Government of Nepal. Rights of all people with
disabilities to participate fully in society have not been practiced by the state. In terms of
health, accessibility, education, economy, and employment opportunities people with
disabilities are treated as second-class citizens.
A research has indicated that most of the disabled persons (69.3%) depend upon support
from their family members.
Having a disabled person posed problems in most (90.5%) of the households. The
difficulties they faced were mostly related to the inability of the disabled persons to work
and taking care of the disabled persons, like teaching new task or having to leave the
disabled persons alone.
More over, still a large number of the disabled persons have not got any kind of
treatment. This could be due to lack of knowledge and awareness that impairment can be
treated. It could also be because the family does not have the resources, or because the
health facilities do not function properly and staff does not know about disability.
Similarly, acording to the finding of New Era most of disabled persons have no education
(68.2%) as compared to the general population, where 4.8 percent have no education. The
literacy rate is considerably lower for females than males, with 77.7 percent of the
females and 59.6 percent of the males having no education
The participation of disabled person in skill training is also negligible.
The women with disabilities have been facing double discriminations first as a disabled
person and second as a woman. Though there is a provision of five years additional
prison sentence for the rapist of women with disabilities,the clause that grossly
discriminates between man with disability (MWD) and women with disabilities (WWD)
is still active in Muluki Ain, (2020 B.S.). The Marriage chapter, clause 9 of Muluki Ain
permits husband to remarry another woman if his wife get visual or locomotive
impairment. The same is not given to women. This is the case of double discrimination
for being a woman and disabled person.
1. The stakeholders involved in the theme
The Government at both central and local levels, NGOs working on disability, and
INGOs/UN Agencies have been involved in disability sector mainly in following areas.
• Conducting Community Based Rehabilitation (CBR) programmes.
• Raising awareness and advocacy activities to protect and promote the rights and
opportunities of people with disabilities.
•
•
•
Providing preventive and corrective measures of disability in health sector.
Providing scholarship and conducting special education through integrated approach.
Providing vocational training and other income generating opportunities to support
and promote livelihood.
• Introducing policies and laws for protecting rights and opportunities of people with
disabilities.
3. Attempts being made by Government and others and the Gaps
Programmes and services to address the disability are very limited and they have been
focused specially in urban areas mainly. These initiatives are charity based and not from
the rights prospective. A study done by New Era's says, majority of people with
disabilities are out of education opportunity, health facility, accessibility, social security,
aid and appliances, vocational skills, income generating program, Community based
Rehabilitation etc. Despite recent efforts, from the media and self-help organizations, a
large number of people with disabilities are unaware about their rights. They still think
disability as sin of their past life and prefer to be the subject of pity and charity rather
than to seek their rights to live a respectable life in the society.
Changes in the governing law have become charity outlook on disability. Without
ensuring rights to live a social life for the disable people through legislation, the
programmes designed for people with disabilities become futile. The amended draft of
'Disability Persons Welfare and Protection Act 2039 (DPWA)' also is not fully ensure the
equitable and dignified life of people with disabilities. The Constitutional clauses also
have not been enacted to make special arrangements for the people with disabilities. To
address the need of reservation to insure participation of people with disabilities in all
aspects of social life, the present constitution also need to be amended accordingly. All
the discriminatory provisions in existing laws including the marriage clause of Muluki
Ain should be eliminated.
4. Linkage with identified gaps to Action Aid Nepal's (AAN) vision, mission and goals
The mission of AAN's is "to eradicate poverty through the process of empowerment of
the poorest and most marginalized women, men, girls and boys." The values of AAN
include empathy with the poor and marginalized, mutual respect and equity, non
sectarian, quality and excellence. Disability is an area of AAN's engagements with these
core values to address inequality and injustices in disabilities.
AAN has considers person with disability as one of the rights holders group. ActionAid
believes that "poverty is eradicable" and wants to eradicate poverty through the process
of "empowerment of the poorest and most marginalized". The person with disability
(PWDs) is considered to be the poorest of the poor. It is impossible to eradicate poverty
without including PWDs. Therefore, AAN is involved in different set of activities
concerning disability issues.
5. Action Aid International thematic objectives
•
To enhance people with disabilities socialisation process and mainstreaming them in
development by creating positive attitude towards disability.
• To organise campaign and advocate in partnership with different stakeholders and
rights holders groups and organizations for the rights of people with disabilities.
• To build the capacities of people with disabilities to claim their rights and
entitlements from society and state.
• To support people with disabilities to be self-reliant through social, economic and
medical rehabilitation.
6. Strategies
• Creating awareness to the rights of people with disabilities by utilising all available
means, mass and mediums of Information, communication and education.
• Mobilising people with disabilities to be organised by assisting to create a network of
self-help groups and to get rightful assistance from the state.
• Supporting to establish and strengthen the mechanism to bring all stakeholders
together to work closely in disability theme.
7. Immediate actions
• Activities related to social, economic and medical rehabilitation is planned to enable
people with disabilities to lead a dignified life.
• Attempt to cooperation among partners and other organisations to create a donor
consortium on disability.
• Collaboration with other concerned organisation to launch the organisational
campaign of self-help groups at local level.
• Collection, translation and developing of legal instruments and advocacy materials.
• Developing a media strategy with manual for extensive multi media campaign.
• Establishing a clearinghouse and information centre.
8. Short Term Out comes
• The rights of people with disabilities to education, accessibility, medical services will
be initiated even in the remote part of the country.
• The participation of people with disabilities in decision making forum will be
increased even in the VDC and DDC levels.
• Disability issue will be heard in the mainstream of the development by several
organisations.
• Awareness and acceptance of the rights based approach to disability will be increased
among all stakeholders including people with disabilities
• An effective network of local self-help organisations of people with disabilities will
be built up.
• Adequate laws and policies to address the disability will be in places.
• A mechanism will be developed to publish an annual status report on disability which
will enhance the capacity, transparency and transparency of rights holders and
stakeholders.
• A clearinghouse and information centre will be established.
African Conflicts and the Disability Toll
By Phitalis Were Masakhwe
According to Rehabilitation International (RI) the African continent has over 80 million
persons with disabilities today.
With malnutrition, accidents, crime, diseases and all manner of violent conflicts prevalent
on this continent, Africa risks yet another dubious distinction of being the place with the
fastest growing number of persons with disabilities in the world. Probably one wouldn't
mind about this scenario if Africa had sufficient mechanisms and systems to provide for
the well-being and rehabilitation of those with disabilities. But does it? So why
"manufacture" so many persons with disabilities whom we are so inadequately prepared
to support and protect? What a waste!
To start off, Africa does not have an African charter or convention on the rights and
dignity of persons with disabilities. The majority of government and states in Africa have
no clause in their constitutions or legislation and policies for the recognition and adequate
protection of the rights of disabled persons. Disability and the concerns of people with
disabilities are the least prioritized and inadequately factored section of the national
budget and planning. Disability is still surrounded with a lot of guilt, shame, and stigma
in most of African societies.
Survival is the issue for Africa's disabled children and adults
The infrastructure and facilities in this continent are neither there nor sufficiently adapted
to meet the special needs of those with disabilities. In fact, many children born with
learning disabilities rarely live to see their fifth birthday in Africa. In Europe or America
such children would live to their adulthood due to advanced health care, rehabilitation
and handsome social security systems.
While our friends with disabilities in the northern hemisphere talk of equalization of
opportunities, here in Africa persons with disabilities are still grappling with the question
of where they will get their next porridge. In Africa it's a question of survival. It is that
serious, folks.
Back to conflicts and disability. It is estimated that between 350-500 people become
amputees due to landmines per day. For every one person killed during war and related
violence, two more become maimed. While many other factors that increase the disability
toll in Africa may be excused, disability caused by conflict can longer be tolerated. It
must be condemned, for it's preventable.
Serious issues of governance
The question of conflict, disability and the treatment of those with disabilities are serious
issues of governance. Exclusion is indeed an indicator of bad governance. It should be
one of the areas of concern and scrutiny under the much-publicized African Peer Review
Mechanism (APRM). Indeed the nation's level of human development and democracy
should be gauged from the point of view of how it treats its disabled persons. Disability
and the concerns of the disabled persons should be among the indices or yardstick of a
nation's socio-economic and democratic development.
During the OAU era, African governments did hide under the so-called non-interference
in the sovereignty of other states. Under this useless policy, dictators would rape their
countries with impunity, nobody would touch them. Many lunatics and terrorists in the
name of presidents were tolerated and given safe havens in other African states.
What will be the role of the African Union?
The idea of an African peacekeeping force was long resisted. As Africa burnt and bled
from endless conflicts, whether tribal and politically instigated, its leaders dined and
hugged at OAU summits. What a contradiction? The OAU was an impotent bull, a
toothless bulldog. But has the African Union (AU) changed that hopelessness? Is the
African renaissance guaranteed under AU?
The new partnership for African development, NEPAD, and its African Peer Review
Mechanism APRM has been touted as holding a lot of promise for African's restoration
and economic take off. But, wait a bit...the African economic take off. Where is the peace
and security that will guarantee investors a secure and predictable environment? That will
allow peasant farmers in Ivory Coast to plough their cocoa farms. That will allow
children to go to school in Darfur, Sudan or northern Uganda? Where is the peace to
allow rural women in Kenya to engage in self- help initiatives and merry-go-rounds?
Economic take off and predictable environment are inseparable in my view.
For AU to make a difference, it must break with the past OAU policies of noninterference and sovereignty. AU must be sufficiently equipped to prevent conflicts and
address them from their roots. Progressive African leaders and the architects of novel
ideas like NEPAD must summon sufficient coverage to tell off their wayward peers.
APRM must wield a big stick and carrot for it to have meaning. It must encourage good
governance across Africa but must also firmly and decisively deal with deviations from
the accepted norms and benchmarks of good governance and democracy.
Ineffectiveness of "soft diplomacy" in Rwanda and Darfur
The so-called soft diplomacy and soft handling of rogue leaders must stop. Look at what
happened to Rwanda. It shouldn't have happened. The Rwanda genocide could have been
prevented by the OAU. African leadership did very little, very late. And after the
genocide, they blamed the international community, the United Nations and their own
son, Kofi Annan, for not doing enough. Of course the international community has a
share of its responsibility for the African instability and conflicts. But, what has been the
African leadership's role in that conspiracy? When will African leadership learn to own
up to what is really their own mess? We can't keep scapegoating forever!!
Take the Darfur question for instance. By the end of that worst humanitarian crisis, a lot
of people will not only have been butchered but also maimed and disabled. The Darfur
crisis will massively increase the disability toll. For over 18 months now, the Sudanese
Government backed militia, the Janjaweed, has brutalized, raped, killed and maimed
thousands of blacks in Darfur region.
The international media has showed us and told us of the untold suffering the people in
Darfur have had to endure. What we have not been told is how many have been made
disabled. What lives are they leading? If some were lucky enough to get into refugee
camps, what is life like for them there? What is their future? Human Rights watchdogs
should tell us more about this. Why are they silent when disabled persons' rights are
violated?
How has the AU handled this crisis? How firm and resolute has the AU leadership been
with President Omar Hassan El Bashir of Sudan and the way he has dealt with the Darfur
question? As the AU leadership procrastinates and prevaricates, another Rwanda style
genocide is brewing up. And when that happens, they will blame the US, the United
Nations, the international community and lack of resources as President Olegusun
Obasanjo of Nigeria did the other day, in an interview with Jeff Koinage of CNN.
President Obasanjo is being economical with the truth. He cites lack of resources to deal
with conflicts in Africa but where does Africa get the resources to ignite and fuel them, in
the first place? We must come clean on this!
Need for conflict resolution and accountability
AU must also be more serious about conflict resolution and peace making in Africa.
Some warlords in Africa have made peace talks an industry and a lifetime career. From
the great lakes region to the horns of Africa to Ivory Coast to Liberia to Sierra Leone.
These warlords roam African capitol cities and live in five star hotels in the name of
peace talks, which they have also absolutely no intention of honouring. They sign ceasefires and peace agreements in daytime only to trash them at night.
At some stage these militiamen and warlords must be rounded up and put in jail to stand
trial for crimes against humanity. Instead of making them accountable for the torture,
killings and disability they have caused much of Africa, we arm them and give them
asylum when need arises. Charles Taylor of Liberia, for instance should have been
handed over to UN war crimes tribunal in Sierra Leone. But what have we seen, instead?
President Obasanjo, the chairman of African Union (AU), gave him protection in the
name of asylum.
African people and leadership and the international community must rein in this primitive
culture of carelessness, recklessness and impunity. This culture must be banished,
ostracized and demonized on the continent. How for instance will one explain the
endless, shapeless and timeless Somali and Sudan peace talks that Kenya has been
brokering under the IGAD initiative?
Disabled Africans: get involved!
Countries like Kenya must review and reassess their support to these lopsided peace
talks. Peace making in Africa now seems like chasing wind! Africa can and must put a
stop to murderous conflicts that keep on adding to the number of disabled persons. That
will require practical commitment and ruthlessness on the part of the continent's top
leadership. Jokes aside! And to disabled people, stand up and demand an end to these
senseless and stupid conflicts. Be involved and demand to be involved in conflict
resolution and peace making initiatives. Be involved in the so-called African Peer
Review Mechanism. Don't be left out. Never again.
Enough is Enough!
The writer has a physical disability and can be reached online: Phitalisw@amrefke.org
2004: Year of the Emergence of Persons with
Disabilities in Ibero-America
By Antonio Almoguera, CERMI (www.cermi.es)
In Santa Cruz de la Sierra, Bolivia, Ibero-American disability organizations have defined
the objectives and lines of action for 2004, the Ibero-American Year of Persons with
Disabilities. The governments of the member countries have pledged to approve far
reaching national plans for this year, which will end with a regional conference of
ministers in the field of disability, in Costa Rica in November, coinciding with the XIV
Summit of Presidents and Head of State of Ibero-America.
This 2004 cannot really be a year of celebration in a continent where developing
countries are very far from the reality of welfare for all. Here persons with disabilities
lack equal opportunities, mainly because there are almost no social and work integration
programs, and there are no permanent plans toward accessibility and full enjoyment of
human rights for all. Here, the majority of the population subsists under the hardships of
poverty and governmental institutions are not efficient at meeting the needs of the people
who need more help.
This reality demands the urgent commitment from administrations, political parties, and
social organizations. In Ibero-America, it must be a strong commitment, fostering a
positive change, and a solution to the immediate needs of more than 53 million persons
with disabilities and their families, as is estimated by the World Health Organization.
The Official Follow Up Committee
In November, 2003, the city of Santa Cruz de la Sierra in Bolivia, hosted the XIII Ibero-
American Summit of Presidents and Heads of State. On that event, it was approved that
2004 would be the Ibero-American Year of Persons with Disabilities. A few months later,
from March 20 to April 2 of 2004, Santa Cruz de la Sierra also hosted a Seminar
organized by IMSERSO, the Ibero-American Inter-Governmental Network for Technical
Cooperation (Red Intergubernamental Iberoamericana de Cooperación Técnica,
RIICOTEC), the Ibero-American Network of Organizations Persons with Disabilities and
their Families (Red Iberoamericana de Organizaciones de Personas con Discapacidad y
sus Familias, RIADIS) and the Spanish Agency for International Cooperation (Agencia
Española de Cooperación Internacional).
The participants decided to establish an Official Follow Up Committee to verify the
results of the Ibero-American Year, 2004. The Committee will foster qualitative and
quantitative improvements in the living conditions among the disability sector.
The first thing that the Ibero-American Network did was to elaborate a Plan of Action
and deliver it to all the governments of the region. This Plan of Action will be discussed
during the Meeting of the Disability Councils of all the countries of Ibero-America,
during their meeting next June in Quito, Ecuador.
Disability and development cooperation
As proposed by CERMI, a founding member of the Ibero-American Network and one of
its vice presidents, the European Union and each of its members are being called to
consider disability as a permanent factor of preferential attention within development
cooperation policies and programs. CERMI was represented at the Seminar by its
Executive Director, Luis Cayo Pérez Bueno.
This Seminar also calls for the European Union to direct at least 10% of the total funds of
development aid budget to plans and programs aimed at persons with disabilities.
National and international organizations of persons with disabilities must be part of the
planning, operation, and follow up stages of these programs.
The participants of this Seminar requested that the European Union, the major
international disability organizations, and other nongovernmental organizations in the
development field, enforce conditions by which the recipient countries of international
funds, must include disability issues as part of their infrastructure and programs,
including accessibility for all its citizens.
Three levels for action
The Ibero-American Network of Organizations of Persons with Disabilities and their
Families fosters establishing effective public policies for improving the living conditions
of persons with disabilities and their families, particularly those living in poverty.
This Network considers that it is important to expose the social reality of disability in
Ibero-America. There is a great need for more research (studies, surveys, polls, and
census) and analytical work on existing data and national and international legislation, to
foster a coherent and strong political action.
The three levels of action cover three major areas:
1. Communication and information which among other initiatives include the
publication of bulletins, a series of press conferences to disseminate information and
news about actions planned or being performed, together with the operation of a WEB
for the Ibero-American Network.
2. Organization, including the creation of country Committee with the purpose of
advancing in the national Plans of Action, including its calendar, which must be ready
on May 15.
3. Political Action, to commit the States to fulfill the objectives of the Ibero-American
Year of Persons with Disabilities, which officially is to be inaugurated before May 15.
Efforts should also be made to promote the work toward the International Convention
on the Defense and Promotion of the Rights and Dignity of Persons with Disabilities.
Efforts must be made to include persons with disabilities as part of the official
delegations to the meetings of the United Nations Ad Hoc Committee. Another
objective in this area of Political Action is to present and official request to the
Organization of American States, so this international will establish the Committee on
the Elimination of All Forms of Discrimination Against Persons with Disabilities, as it
is indicated on Article VI of the Inter-American Convention on the Elimination of All
Forms of Discrimination Against Persons with Disabilities.
The Ibero-American Platform
One of the main objectives of the Ibero-American Network of Organizations of Persons
with Disabilities, which is also presented to the XIV Ibero-American Summit of
Presidents and Heads of State and the Ibero-American nations, is the creation of an IberoAmerican organization to foster and coordinate the regional public policies on disability.
One of the objectives of the new international organization is to foster and channel the
cooperation for development from the European Union and its Member States.
The Ibero-American Network urges the establishment of a National Commission for the
Coordination of the Activities of the Ibero-American Year of Persons with Disabilities. It
must be composed of representatives of all government powers, ministers and
administration departments, together with institutions, universities, the media, the civil
society, and organizations representing persons with disabilities.
The Penitentiary System and the Mental Health
Hospital in Guatemala
By Silvia Quan (silviaq@intelnet.net.gt)
The majority of the people living in our conservative societies, associate the situation of
persons with disabilities with hospitals, especial education schools, asylums and other
forms of medical and social forms of segregation, so common in poor countries.
Therefore, is it frequent that they do not think about persons confined due to the
commission of some criminal act and who, pursuant to a court order, were admitted in a
medical center.
As in many countries, in Guatemala when a person is sentenced to a term in prison
because of a criminal action, if it is proven that she or he has a psychiatric impairment,
the measure or ruling is to confine the person in a health facility, substituting for jail.
The ideal would be to provide these health services within the penitentiary and that, in
every case, the service would be, duly and safely, provided only to those who need it. The
problem is that such service does not exist in the jails of this Central American country.
So, the inmates are declared "mentally sick" and taken to the Special Ward of the
National Mental Health Hospital.
Who is responsible?
It is no secret that keeping inmates as hospital patients with security measures, has been
one of the principal causes of repeated violations to human rights. First, we must
understand that these persons, though they need health attention, are and continue to be
under the jurisdiction of the Ministry of Government (Ministerio de Governación), the
institution of the State responsible for the security of the Guatemalan population.
On the other hand, because the irregularities and the corruption within our justice system,
strings are pulled so that criminals are sent to the hospital by the courts, from which they
simply escape. The problem is very complex, because the hospital says that its mission is
only to provide health services, not to guard inmates.
The most serious problem
Multiple problems derive from this situation. Many of the patients who need medical
attention, are also very dangerous sentenced criminals. These individuals pose a danger to
others and to themselves. On many occasions the inmates admitted to hospital facilities
have threatened the civil rights and the personal security of the non-inmate hospital
population and medical personnel.
The most serious problem comes from the custodians of inmates who need to come there
for medical treatment. These prison guards have been accused of raping hospitalized
persons or obliging them to perform acts against their will or provide entertainment to
other police officers. Some members of the hospital staff have witnessed such violations,
but they are afraid to denounce. There is impunity and fear. The accompanying "security
guards" abuse power and carry weapons most of the time.
One of the immediate consequences of these violations is the increase of the number of
residents with AIDS. The problem becomes more alarming because the National Mental
Health Hospital does not have sufficient resources to prevent sexually transmitted
diseases from being transmitted from the perpetrators to the hospital residents and
hospital personal. Here is another evidence of a violation to the right to health and,
fundamentally, to the right to life.
The problem is being ignored
Both the authorities of the penitentiary system, the Ministry of Government, and the
public health officers, know this alarming situation. Yet, they have not started corrective
actions to ensure the personal security of the residents of the National Hospital of Mental
Health. There are some good alternatives like operating a small mental health or general
health service within the main penitentiaries of Guatemala.
The other part of the problem deals with the lack of commitment, political support from
government authorities. They are just postponing urgent measures, and keep on ignoring
a problem that grows day by day.
This type of situation reflect why persons with disabilities are not perceived as having
rights, particularly those persons presenting stigma and so much prejudice, as it now
happens with people with psychiatric disorders. They are made fun of, they are
undervalued, made invisible, and excluded, and considered sub-human.
We have to tell the world about the violations hurting person with disabilities who have
been confined to institutions. This article is a strong public denunciation of the
negligence manifested by the government of Guatemala. Guatemalan authorities are not
interested in solving the corruption, the abuse of power. They are not developing public
polices to foster the security and the human rights of persons with disabilities.
Urgent measures to stop this situation are needed. Liberty and respect to dignity are
fundamental human principles, which have been universally recognized. It is time for
persons with disabilities to be fully included in society, as part of human diversity and as
contributing members of society.
We need to create and strengthen mechanisms fostering the participation of all persons
with disabilities, and do so with the principle of equal opportunities. We all must demand
better living conditions. The Movement of Persons with Disabilities should invite and
unite efforts with other groups of excluded peoples, including women, native groups, and
other forces which have to be more active in national, local, and community life. This is
the way of demanding our rights and fundamental liberties, which must be respected by
all and for all.
In this sense, the marked prejudice against persons with disabilities who are users of
psychiatry must be eliminated. They must be allowed to organized, represent themselves,
and participate as fully as they are able.
Interviews with Disability Leaders Elected or
Appointed to Government Office
Ilene Zeitzer of Disability Policy Solutions (ilenezdc@yahoo.com) conducted the
following interviews with disability leaders from Lesotho, Malawi, South Africa, and
Norway during the RI African regional disability conference, held in Durban in October
2003. The interviews are part of a larger investigation being carried out by the World
Institute on Disability on the impact on governance of elected and appointed politicians
with disabilities. So far, interviews have been completed with disability leaders who have
served in high governmental positions in Africa, Europe and North America.
Interview with Moses Masemene, Minster of Justice (Lesotho)
Q. What do you think has been the impact of having a person like yourself in a high
office? Do you feel you are advancing the agenda of people with disabilities?
A. I think the impact is that while representation is not as great -- there is only one in the
Parliament now--whereas initially in 1983 it was about 150, nevertheless, I think the
impact is that by lobbying, we were able to put forward amendments to incorporate
disability issues in places like education, building control, sexual offenses, and criminal
procedures legislation. Those amendments required efforts to convince MPs to do that. In
the beginning, when I first came in 1993 it was like, "how did this blind man wind up in
Parliament?" But with time, because I also became a force, I compelled them to dialogue,
I engaged them in discussion, and the attitudes of MPs toward disability have been
transformed.
As you know, MPs come and go, just like in offices of government, but when you
transition to a new one it doesn't mean you are going to start all over again. So in the
same manner, as new MPs came, they became like the old MPs because I have been
sitting since 1993. So my presence became a way of sensitizing them. When you are
disabled minister, it's more elevated because you are in the decision-making role on the
issues of policy and legislation in disability policy, so you have more responsibility to the
cause. I do think there's an impact but I think there's more to be done. The massive task is
to ensure that the whole government integrates disability in all its activities. We also need
to strengthen the movement itself so that we can also continue the lobbying because the
role has changed. My role has changed, I'm sort of a nexus between the movement and
Parliament/goverment. But as I said we need to keep up the movement and continue with
lobbying because we need more voices dealing with these issues.
Q. Are there now currently other members of parliament with disabilities in Lesotho?
A. There's only one chief who got disabled in a car accident in his village. For the last
Parliament he was at home. During this Parliament, I advised the Senate to facilitate his
attendance so they built a ramp to the Senate house so he now attends as a chief.
Furthermore, he is not in charge of disability questions, but he is disabled. So I think that
had an impact on the Parliament because they had to make it accessible to him. They had
to provide him a table so that he could write. With disability, social attitudes don't change
fast but they do when it becomes necessary.
Q. Are there specific laws in your country with regard to disabled people?
A. As I indicated before, we are able to make an amendment to certain sections of laws,
like building control laws, about accessibility. There are also laws regarding sexual
offensives - for protection of disabled people from rape, etc. There are now laws like this.
Q. What about employment accommodations, etc.?
A. At the moment there are no labor laws per se, there's no law like this. But we want that
policy for disability, also convention laws on disability. But we will have to wait years to
accommodate disability. But I've been communicating with the ministers in force. They
will support the laws when they come through my chamber - all the laws of government.
So it can be an envious position. I can advise and even more so in my way, inform,
mostly about disability legislation because most of them want to be informed and
updated.
Q. What about access to education?
A. There is a provision for that, and there are amendments for that in government at the
moment, I think for pre-primary to support disabled children. There's also a policy for
free education. We also say that disabled people must be given the use of facilities and
support services so that the education can be meaningful.
Q. Do children with disabilities go to regular schools?
A. For the blind, there are integrated schools and for other types of disabilities, they go to
other schools. Only the deaf go to special schools.
Interview with Susan Chitimbe, Minster Responsible for Persons with Disabilities
(Malawi)
Q. What do you think the impact has been of having yourself and other disabled
individuals in high offices? Are there other people with disabilities in high offices in
Malawi, and can you tell us about them and what do you feel the effect has been?
A. Indeed there is a high impact in having disabled people in high offices. I am one of
them, I was appointed Minster Responsible for People with Disabilities in the President's
Office. It really has an impact because when you're in government, the voices of the
voiceless are heard. Unlike before where we were only advocating outside of
government. But, the advocating and the lobbying which we did while I was out in the
non-governmental organizations, I think helped us to be in government now. But because
I am in government now, I understand the problems of disabled people out there in
society and I take their concerns to government -- to the Parliament.
Parliament or the Cabinet endorses or approves what non-governmental disability
organizations need. For example, the policy we have now is the policy that has been
written by non-governmental organizations, typically organizations of people with
disabilities, the civil society, and government officials. It's a policy that has an impact on
all Malawians and you can see that as persons with a disability, we can manage to work
hand and hand with others. And we also have disabled people who are in the
commissions of government. We have a lady who is a commissioner in the national
commission of women and she is also disabled. But we are fighting for more seats in
positions of government. Nevertheless, things are working, even though we are not really
many, but we know that the numbers will increase in due course.
Q. Can you give some specific examples of new policies that are in place because of this
enlarged role of disabled people and the influence of Disabled Peoples Organizations
(DPOs)?
A. What we can see now is that the policy for disabled individuals, which wasn't there
before, has been worked on and people with disabilities are included and in every
Ministry we are seeing that we have to mainstream disability issues. This has really
helped, because if you are talking of education, you will find that persons now can talk of
education for disabled people. And in health, it's the same. We are there in the system but
what we are just working for now is the implementation. But the implementation is being
taken on board because of this Ministry, the Ministry responsible for People with
Disabilities, whereby the officers of my office are part of other committees in the other
Ministries, so we are seeing that we are being included in each and every policy that we
have in Malawi.
Q. Does your office have actual oversight of every other Ministry in terms of new
policies, new initiatives, new programs, new construction? Do they have to run it by you,
or do you rely on the fact that you have someone in those committees?
A. We really rely on the principal secretaries, because when we were having our policy,
all the principal secretaries in government were invited to attend. The principal
secretaries are the key officials of every Ministry. So they were brought on board and
each and every principal secretary knows about disability issues, so when they are trying
to work on a policy or any change in their Ministry, they are supposed to consider the
perspective of disabled people.
Q. Do you actually monitor what they do or do you rely on their understanding and
hopefully their agreement with this?
A. No, we actually check.
Q. So you have oversight?
A. We have oversight of whatever is happening. So either myself or the principal
secretaries or other officials in the Ministry will be responsible.
Q. So what happens if you discover, for example, that in a different sector, let's say
transportation, they are planning to, I'll give a made up example, they are redoing the
airport but they haven't made it accessible, or they haven't thought about access enough,
what would your Ministry do? Would you have the power to call it back, to say "what a
minute, before you go any further you haven't thought about this or that?"
A. This is what we are fighting for and we are really doing that. We are supposed to
monitor and see what is good for people with disabilities.
Q. Do you have your own budget- does your office have its own budget?
A. Yes, we have our own budget as a Ministry.
Q. Can we talk a little bit about employment? I know most developing countries have
very high general unemployment. Are there specific initiatives that you are pushing from
your office to create more jobs for disabled people?
A. We are really trying, but I think it is very, very difficult in Africa for most of the
people with disabilities because most didn't go to school. So what we are trying to do is
to create more businesses for disabled individuals or to create independent living through
those small-scale businesses whereby they can be self-reliant. But it is very, very difficult
for most of the people to go to work. There are others who have been to school and they
are really working, but it is extremely difficult for us to create opportunities for work.
Even non-disabled persons are missing out, they can't find work. So what we are trying to
do is find out how we can involve disabled persons to be self-supporting, to make their
living through small scale businesses or maybe bigger businesses, cooperatives, etc.
Q. How do you think that the other non-disabled governmental people react to you and
your office? Do you think that they just pay sort of token respect or do they really
understand? I'm sure there are some individuals you have won over and some that you
haven't, but how do you think that they regard and your office?
A. Actually they respect me, they have the same respect as with any other Minister or any
other person. They don't regard me because I'm disabled and think they can tease me or
the like. I have been well received.
Q. And you feel that they don't just look at you and your office as important when it has
to do with disability, but that it is across the board with everything?
A. That is right, because as a government Minister, I am a Minister for each and every
one, but specifically for people with disabilities. They respect me as a figure of
government who is trying to improve the lives of people with disabilities. That's what we
are fighting for, we are there fighting for the Malawians, either non-disabled or disabled,
but particularly for disabled persons because I'm in that office.
Q. And the office is at the presidential level, the same as it is in South Africa?
A. Yes, we report directly to the President.
Q. And do you think that that helps, rather than having you buried down in one particular
Ministry, let's say health or social or education. Do you think it helps to be at the
Presidential level?
A. It does but even the other Ministries actually report back to the President. We can't do
anything without reporting to the President.
Q. You talked a little bit when we first started speaking about legislation or policies for
disabled people. Can you tell me a little bit more about how that works? Do you go to a
Member of Parliament and ask him to introduce legislation or do you have the right to
suggest legislation?
A. What actually happens is that we work with NGOs. Now this policy came about
because of the cry of disability NGOs, because we didn't have a policy, and it hasn't
actually passed yet but it is about to pass. We went from the grassroots to the civil society
with each and everyone else, so I think that's how we came up with this policy. We also
work with the principal secretaries of all government Ministries, in that we have to
scrutinize the policy just to see to it that it is fit for everyone who is disabled, or who is
not disabled today, but might be disabled tomorrow, so it must be a policy for all people,
for each and every one. So policy is initiated through NGOs, government, and the civil
society to ensure that the rules to be put in place are good for people who are now
disabled and [those] who might be disabled in the future.
Q. But the legislation legally, from a Parliamentary position, would need to be introduced
by somebody. So how do you do that, do you get a champion or can you suggest it to a
Ministry to introduce legislation?
A. We are working hand in hand with the Minister of Justice. He is the one who is going
to introduce it.
Q. Do you think that there has been measurable progress? Do you see progress?
A. Yes, there is progress. I started when I was young as a disability activist, and then I
was a Committee Member of different committees on disability issues, later on I was a
Commissioner and now I am the Minister for People with Disabilities so we can see the
fruits coming out of what we fought for and we know we have made progress and
continue to progress.
Interview with Wilma Newhoudt-Druchen, MP (South Africa)
Q. What do you think has been the main impact of being a person with a disability in a
high office? Do you feel that you are a token, do you feel that you are a voice crying in
the wilderness some days? Do you feel that you are advancing the agenda for disabled
people?
A. Well, first, I'm definitely not a token, and I can't be. Secondly, because of my
language being a very visual language a lot of attention has been paid to that in
Parliament alone and not just among staff of Parliament but the Members of Parliament
themselves. For example, many of the black MPs -- because the black culture does not
accept disabilities very easily -- when they go to their constituencies, they meet parents or
other disabled people, and now they have become more aware. Some MPs didn't know
that disabled people are entitled to a bond or that there are schools that take disabled
people. So they will come to me and ask me questions. Before when I entered Parliament
they would keep quiet, they didn't know how to approach me, but now MPs come up to
me. Some of the MPs' family members are disabled and now they will come and tell me.
They feel proud of the fact, they will say "Oh my brother's child is deaf or is blind or is
disabled in some other way." And then they themselves, they say to me that "they would
love to learn to speak sign language." They would come to me and ask me to learn certain
signs and so they would become more aware of deaf issues and of sign language.
I myself am not really usually emotional, but I know sometimes in my speeches in
Parliament I am emotional about disability issues because I'm there to articulate
personally what being disabled is all about. I want to bring that across to the MPs and to
make them aware. Many of the opposition party will come to me or see me and say thank
you, you have educated us about not only your particular party but ours as well. Little
things like that break down the barriers. But one problem is that the department must
implement these things, and the departments are very slow. We constantly have to go to
them and remind them and say, "Listen, you have to implement things for us -- we've got
policy, we've got legislation." But the implementation is not happening, and we keep on
going to Parliament and reprimanding the departments all the time. We say that we have
to monitor the departments to see that they are implementing these policies that can
change the lives of disabled people.
Q. Do you get to choose the Committees you are on? And if so, can you use some of the
budget that the Committee has oversight on to direct more activities toward disabled
people?
A. We can choose the Committees we want to sit on, but the political parties might also
say that there are too many Members on the one Committee and they will then delegate
another Committee to that Member. But you can choose your own interest. I'm an official
member of the Committee on Communications. I'm also a member on a new Committee
that was established in 1999 that is responsible for improvement of life and status of
children, youth, and disabled persons. The Committee itself has a budget. We hold public
hearings, we go on tours -- national tours, provincial tours, international tours. We have
too many provinces to visit in one year, so we will pick one province where we need to
go. But every department has a budget. We will go to each department and ask them for
an annual report and we will want to see the budget, and we will look at the budget and
see how many funds have been allocated for particular policies. And we can then ask,
"What has been done?" And they will say, "Oh, we are not aware of disability issues." Or
they will say they never asked for funds from the department of finance. So they can ask
for this next year and we can come back to them. But it is actually like that.
Concerning the Committee budget, for example, if one of us wants to come to a
conference like this (overseas), the Speaker of Parliament will have to approve that
budget. Each member does not have his or her own budget. Parliament will be allocating
funds to a Committee and that's the money you use. We also have constituent funds.
When Parliament closes or is in recess, we get some funds to do constituency work in the
community -- especially for your own area. So my money, my little money, must cover
my car expenses, my accommodations, maybe transport and refreshments for people who
come to the venue or the meeting. I believe that the deaf have no access to Parliament not
even via the TV so what I do is I go out to the community, the deaf community, and bring
Parliament to them. So my money, my constituent money is used for my meetings.
Q. So you're not nominated from your district, the party puts you on the list?
A. Either through your branch in your local area or through a person who has a very good
relationship with the ANC. So the Disabled People of South Africa negotiate with the
African National Congress (ANC) and people would like to nominate these five specific
people to be on the party's list and the ANC agrees and says they will be part of the
national list.
Q. Do you have a staff as a member of Parliament- a staff that works with you? Or is it
just a committee staff for everyone to share?
A. I'm a normal MP, only recently I was promoted to a whip. A whip is basically, that
you supervisor a certain number of interests. Normal MPs don't have their own staff, but
a whip has a chief person. Whips share a secretary, so most of the time I do my own
paperwork. I contact the deaf, I know the deaf community, I know the disabled
community. If there's no interpreter, I will then go to this one secretary with whom I have
a very good working relationship, and that's who I basically work with. We don't have
our own staff. Maybe the chairperson of the Committee will have his own staff, and that
would be a secretary and a researcher.
Q. Do you feel that there has been measurable progress in your country in the specific
areas such as education, access to education, particularly for kids with disabilities? Are
you things that you can cite that you feel have improved in recent years?
A. Yes. The ANC government didn't believe in mainstreaming and, I don't believe, are
fully converted to mainstreaming yet. But they are aware that, the educational department
is aware, that they cannot simply implement mainstreaming. For example, a deaf child
going to a hearing school right now, there will not be any interpreters -- they will not get
the assistance they need in a hearing school. There aren't interpreters in all classrooms,
maybe not even one interpreter all day, so that is the question now. That is what we are
working to find out, so we need to be realistic. In the past, in the schools for the disabled
children, education was weak, it was totally incomplete. But it has improved up to now. It
hasn't been 100 percent, but the education is improving in the schools for disabled
children.
Recently, the deaf had a march to fight for sign language to be instituted in schools
because the education department passed a new syllabus. For eight years sign language
was supposed to be part of the syllabus but it was not. The Department of Education took
note of that, so just recently they took up a task team to work this out and the deaf people
of South Africa and the department of education are now looking at how sign language
can be part of the curriculum. You must remember that the teachers right now in the
schools for the deaf don't know sign language or only know a little. Do they understand
bilingualism? Do they understand the whole purpose of bilingualism? They do not teach
via sign language - do they know how to explain sign language as a language? Do they
understand that? So they are discussing how they are going to do all these things. All this
-- that all teachers must sign -- is supposed to be implemented before January 2004.
It is issues like this where you can see the progress. It is slow, but issues like that help to
see that if the department heads are made aware then they will do something about it. The
problem however is that South Africa is not like in America where there is a lot of
research being done to decide why sign language is so important, and things like that.
They also prove that South Africa's ways on doing things. They have never done research
like that at universities. It's like the chicken or the egg type situation. Do we go in and
teach sign language or do we do the research first? Which comes first? It's that type of
situation. What works overseas, may not be the right solution for here. It's important that
we find a South African solution.
My chairperson said, "Wilma, you came in. But you came in with a different view of
communication." He said he never thought that deaf people communicated. But the way
that deaf people communicate is also my work. The first time I went to an ANC policy
conference, I thought I was going for the youth and the children and the disabled people,
but when I came they said, "No, you're coming for communications." And they put forth
a resolution that said within 3 years, the South African Broadcasting Corporation
(SABC), our TV channels, must have captioning, sign language, and provisions for the
blind. So the department has to implement the ANC resolution that became the policy for
the department. So when the resolution was finished, we then went to a full amendment
vote that said accordingly that the SABC must think of the needs of the deaf and the
blind. This was the first time, it had never been in the vote before, with the disability
people in the political mainstream. I don't know if I will be back next year or what
because we have elections next year. But whatever happens, the SABC must implement
that for the deaf. The SABC is quite sick of me, they don't like to see me when they come
to meetings. But when it comes to access to information for us disabled people, the
amendment is so important. I mean, that to me is something that has happened for us as
disabled people. Yes, maybe right now you won't see things happening fast but the 10 of
us who are in Parliament came in 1999. To expect implementation to occur so fast, well
that costs money. But, the goal is that things must change, even if it's slowly.
Interview with Charlotte McClain Nhlapo, Commissioner in the South African
Human Rights Commission
Q. What happens when you have an office at the higher level like you do in terms of the
mechanism for setting disability policy?
A. I think I would preface anything by saying it's invaluable to have people with
disabilities in any office - in our situation it was more about having people in the Office
of Human Rights. When I came to the Human Rights Commission, there was a person
with a disability who had been appointed through a process of disabled people putting his
name forth and he then was the Commissioner on Disability Issues. I came in on the
ticket of child rights but obviously even in relation to child rights the issues that were of
concern to me were the issues relating to the rights of children with disabilities. And so
for me it was very important to have somebody in my office who was responsible for
disability issues and who was himself disabled, but also to be able to come into an office
at that level on rights issues to be able to introduce the disability perspective to it. Times
have changed, and I now am the Commissioner responsible for children as well as for
disability issues.
Q. So that person has left?
A. That person has left. But again, I think it is so important to have a person who is
disabled in a position like that and not have someone who is non-disabled talking about
disability rights. I think what it has afforded really is that you have somebody there who
can motivate for disability issues and make disability issues at the level of developing
policy, a cross-cutting issue. And so that it doesn't remain something that's left out,
because it will be left out. My experience has been that I constantly have to say, "what
about disability, what about disability?" And that's beginning to change now, people are
beginning to introduce disability almost automatically and I think it's because almost
from the beginning of the Commission, we had somebody with a disability at that level of
Commissioner.
So now it's standard practice when we do protocol within the Commission. We send out
protocols to all the government Commissions to find out what progress is being made in
terms of the rights that are contained in our Bill of Rights and we ask questions that are
related to vulnerability and vulnerable groups. We always ask questions around
disability. "What has the Department of Education done in terms of inclusive education?
What are they doing for adult disabled learners?" So in terms of our monitoring of
government's progressive realization of rights, the issue of disability appears. But I think
again it goes back to the fact that we've constantly had somebody there to say, "let's look
at disability rights issues." So within the Commission, the Commission has been fairly
sensitized. A lot more could be done, but I think it's really a good thing to have.
What I am trying to do now is not be the only person that deals with disability, and so
very often I will ask a colleague. Not too long ago there was a big conference on
disability and the right to work and employment, and I particularly thought that it was not
good for me to go to that. I asked one of my colleagues to do it because I want the other
Commissioners also to get an understanding of the issues that we're dealing with, so that
when they talk about equality they too can talk about disability and not necessarily have
to have me there to do that. So, it's about mainstreaming but it's also about having the
expertise that can then be shared and developed within the Commission. And then
obviously with the greater work that we do which is partly to advise government on
various policies and to monitor government, so the aspect of disability always comes up.
Q. Can you suggest to members of Parliament that certain policies are needed? Tell me
about how you work with the legislative process.
A. One of our functions is particularly to advise government on legislation. That can be
two-fold, it can be a more proactive role which would be to advise on the gaps that we
see in the legislation or just the basic non-existence of legislation that we think is
necessary. Or it could be a more reactive approach where bills have already gone through
and then we're asked to comment on them. We're almost always asked to comment on
bills. In fact we have a legislative monitor who sits in Parliament and informs the
Commission on pieces of legislation that she thinks that we should be commenting on. So
we can either do it proactively or reactively. So, definitely we can suggest legislation.
In relation to disability, we've looked at the Social Assistance Act which is being
amended and there we've made comments and recommendations about issues we think
are important in relation to disability, and we've done that with other pieces of legislation
too. But again I think there's a lot more that the Commission could do in relation to
advising government on legislative intent and on amendments. We've tended more to
work around amendments and bills that have already gone through and to do less on
proposed new pieces that we think are important. But also we may not do it formally in
the sense that we may not actually send in a written bill, but we very often facilitate those
kinds of discussions, and not related to disability, but say in relation to the right to food.
We've been able to facilitate meetings where the issue comes up and it's because the
Commission has felt that there was a gap. Plus in our monitoring process that we've
developed, we make recommendations and very often in those recommendations, we'll
make specific recommendations that relate to legislation. We may say for instance in
relation to disability, there's lacking A, B, C, and D. And we often have inquiries,
national inquiries. Last year in November we had an inquiry stroke research project that
looked at a barrier-free society and we came up with a report that made specific
recommendations in relation to looking at our building code and trying to harmonize that
with our constitutional principles. So some work has been done in that regard.
Q. The legislative monitor mentioned - would that person's job be to look at all
legislation irrespective of whether technically it relates to disability?
A. She looks at all legislation with a view to see how we can input into that legislation
from a human rights perspective, and so it could be disability rights, could be children's
rights, could be the rights of older persons.
Q. What about things like transportation. For example, if your Minister of Transportation
was proposing new guidelines for trains?
A. Theoretically she should be doing that, but we've got one person in Parliament and
we've got masses and masses of bills coming through, so we haven't been able to have
that kind of eagle eye that we want to say, "what's happening in terms of transportation
regarding disability." So those pieces of legislation probably have slipped by unless it's
brought to our attention and then we look at making a submission specifically on that.
Q. How attuned are your Ministers in other Ministries to the issue of disability and to the
issue of access and human rights from a universal perspective? Are they thinking about
disability?
A. I think that they are, and I think a lot of it goes back to the fact that we now have the
integrated disability strategy. And I think that strategy as the kind of overarching strategy
for government almost necessitates that they begin to think that way. Thinking is one
thing, implementing is another. And so if you looked at the various governmental
policies, the issue of disability is often addressed in policy, in theory. In practice, it's been
very different. The Commission has a component of legal services, and we are able to
receive complaints from any legal entity and from the public on all issues related to our
Constitutional mandate and so issues around disability would fall into that. But I must
say, in that regard I have been disappointed because we have had very few complaints
related to disability discrimination. I can understand why historically. I understand the
fact that you are looking at a segment of society that has been excluded, has been by and
large silenced, hasn't really had a voice, and therefore are not really aware of what is out
there, even within the new dispensation. And so people don't use the systems that are in
place.
Q. Do they know about it?
A. I think that's one problem. People don't know that the Commission exists, and if they
do know that the Commission exists, they don't know how to access it. And to a large
extent that is a fault that we should take responsibility for, because the Commission needs
to be able to be out there, to be accessible. But obviously there are constraints and
limitations as to what we can do. My concern is always around raising expectations and
being out there, but not really doing it. So for me, I don't want to tread softly, but it has
been a concern for me. I often feel that we don't use the kind of powers that we have as a
Commission, but I also don't think that we're used to the best of our ability, and that's a
concern.
Q. Can you take someone to court?
A. Yes, we can, we have those powers.
Q. Could you get a monetary settlement on behalf of a person?
A. No, we couldn't because that would be a civil settlement. But we could take punitive
action. Having said that, we have taken no action. And again, I think a lot of it has to do
with the fact that I was working on a case and because I saw it from a disability
perspective, a disability rights perspective. I didn't see it as a social welfare issue, even
though it was very much within that domain of health and social welfare. The situation
was that I was told by a journalist that there was a young boy who was severely disabled
as a result of a bad operation in one of our rural hospitals, and I found that it wasn't just
one boy, but several young boys. I was outraged, and was told there was nothing they
could do about it. I wrote endless letters to the Department of Health in the province
asking what was going on, why there wasn't proper nutrition, occupational therapy, etc.
And I was ignored, I was ignored by the MEC, who is basically the equivalent to the
Minister in the province. So as a Commissioner, I have the power to subpoena, and I used
those powers. So we subpoenaed the MEC to the Commission and she came with her
lawyers and we developed a plan around this particular child, which included respite,
nutritional packages, assistance from the state. So I think the Commission has made some
strides. In terms of looking at children being discriminated from schools, we've been able
to go in and with not too much hassle we've been able to talk to principals and say look,
"They are different. You can be creative. All you need to do is bring the teacher
downstairs." I think a lot of it has to do with being passionate about it, being aware of the
issues. And quite frankly I don't think a non-disabled person could have been as
committed to these issues.
Q. How many people do you have working at the Commission?
A. Our act allows for 11 Commissioners, we only have 5 at the moment and one parttime Commissioner and a secretariat which is our support made up of about 80 people
and 5 offices in various provinces, and there we have a provincial officer, a legal officer
and a educational officer. Each Commissioner is assigned a province, and because we
only have 5 Commissioners, each one has 2 provinces. The Commission is a term of 7
years. The way Commissioners are appointed is that constituencies and various interest
groups submit names to Parliament. Then there is a short list and interviews are
conducted by multi-party meetings and then Parliament makes recommendations to the
President who then makes the final appointment. And last year, the President only
appointed 6 of the 11 people submitted, partly because of budgetary restraints.
Q. Do the Commissioners have specific groups they represent or is it all supposed to be
crosscutting?
A. We have thematic portfolios. So thematically, I'm responsible for the rights of
children, people with disabilities, and economic and social rights. We also have a
Commissioner responsible for the rights of older persons, another responsible for the
rights of prisoners, etc. We have a separate Commission called the Commission on
Gender Equality, which is not part of our Commission, but that we work closely with.
Q. Do you know of other countries that have Human Rights Commissions like this?
A. Yes, in Africa there are a growing number of them. There's one in Malawi, Zambia,
Kenya has just started one, Uganda has a very good one, and Ghana has an exceptionally
good Commission. And there are a couple in North Africa. India has a very vibrant
commission. They are gradually on the increase. At last count, I think there were 50
internationally.
Q. In the UK, as you may know, they have a Disability Rights Commission and there has
been a big controversy as whether it should be folded into a larger Commission - such as
the one on gender quality, etc. The debate is to whether it would weaken it (it's quite
strong now) to be part of a large, overarching Commission?
A. Well, we had that debate in the early years of the Commission, and I don't want to say
it was a compromise but the decision was to have a Commissioner in the Commission
responsible for disability issues and that's what happened. But that's somewhat changed
because as I said I'm not there now necessarily just on disability issues, there's a whole
range of other issues. What I would really like to see, and I'm struggling to do this, is to
set up a unit within our Commission that deals with disability because I can't do it dealing
with children and economic and social rights issues as well. And so we are looking for
funding in relation to setting up a unit that could do that. A unit that could work on
sensitivity issues, because we do human rights education and very often we require an
element of sensitizing people around diversity and more particularly the issues of people
with disability. I can't do that, I mean there are just too many things happening. And so
we really require people who can actually be there to do that kind of thing, and it's
something that we're looking at.
Q. Is the Commission at the Presidential level?
A. No, it's a constitutional body so we report directly to Parliament and we can report to
the President. And the reason that we're outside of government, I think for us, it has been
really critical to maintain independence and impartiality from government. It's because
one of our formal mandates is to monitor government, and you can't be in government
and monitor government and therefore it's been important for us to be outside of that.
And it's often a very strange or strained relationship where you advise, you monitor very often people say we are both the judge and the prosecutor, etc.
Q. You obviously would have to do a lot of negotiating, I would think?
A. Yes, I think yes, certainly negotiating has become really important for us. First of all it
really speeds up a lot of things - instead of going through lengthy and expensive court
processes. But even just in terms of the cases we get, because very often we are able to
just mediate instead of going to court. Mediate, educate, talk, negotiate- that's becoming
more and more of what we like to see. There was a time when the Commission was
issuing subpoenas to like19 Ministers and Directors General, and it was a bit rough but I
also think it was necessary at the time to show that the Commission had teeth and that we
weren't afraid to use them. Also, that there are responsibilities and Constitutional
obligations that the state has in terms of responding to our requests for information. I
think it's also a question of growing and maturing and finding different ways of
communicating.
Q. Do you actually publish every year for example how well each Ministry is doing in
that regard?
A. Yes, we submit a full report to Parliament on how the various departments have
progressed on the particular rights in question and then we make recommendations where
we think there are gaps. And that's what I said early on, that sometimes those
recommendations will include looking at the development or amendment of legislation. I
think we, as a Commission have been less efficient in terms of following up on our
recommendations. So that's something that we are possibly looking at having a
monitoring person in our Commission who looks at the recommendations. Because we
make recommendations not just in relation to the state but we make recommendations in
relation to individual cases that we settle. And that often requires some follow up -"Has it
happened? Did it happen effectively? If not, why not?" and where to go from there. But
we have some very interesting cases in the wings. There's a disability discrimination case
that we hope to be taking to the Equality Board. We've just opened up our Equality Board
and there's a case that's come up that I think is right for that.
Interview with Lars Odegaard of the Norwegian Association of the Disabled (NAD)
Q. Tell me about your organization?
A. My organization is not an umbrella organization. In Norway, a population of 4.5
million, we have this nearly ridiculous situation where we have 115 different, separate
organizations for disabled people in this small country. And what we realized 15 or 20
years ago was that it would be almost a disaster to follow up with the separation of
organizations, so we decided that we would, within our organization, NAD, that we
would have affiliated organizations, disability-based organizations within our association.
So we are not an umbrella, we are a member-based DPO with now 12 affiliated
organizations. Our main structure is by local branches, we have approximately 360 local
branches organized through 19 regions and a national body which contains this structure
and the 12 affiliated organizations and a youth organization as well.
Q. Tell me about the affiliated organizations - are they only representative of people with
physical disabilities or is it crosscutting?
A. Only physical disabilities, except we have also among the 12, one parents' association
and many of their children have multiple handicaps. But NAD is an organization for
physically disabled persons.
Q. Why is that? If an organization representing mental disabilities wanted to be a member
and wanted to be part of NAD would you allow that?
A. Yes. Everyone who wants to be a member of our association is free to be a member.
And we have blind members, deaf members, members with mental retardation, etc. But
in general, we have a situation in Norway with so many organizations, that they have
their own strong organizations. So we have created an umbrella where we are cooperating
and trying to work together on the big political issues in Norway. But we have been
involved with international development for 25 years, and in our development work we
do not go out and give our services to only physically disabled persons but to everyone in
the villages. But in Norway, we were created as an organization of physically disabled
people, and we still are an organization of physically disabled. We are 73 years old.
Q. Is there a counterpart umbrella-type organization or affiliated organization for people
with mental disabilities?
A. There are two. The biggest umbrella contains approximately 60 organizations, many
of them quite small. What they mainly do is work with health-related issues because they
are very eager to find medical solutions to their problems. My association has never been
particularly interested in the medical approach towards disability, but rather the societal
approach. So we have a strong relationship in our umbrella with the Blind Union, with
the Union for the mentally retarded and for the deaf-blind and together we are focusing
on society's impact on disability. We do not have a curative approach.
Q. How do you work within your government? Do you have an official status with the
government?
A. In Norway, we also have this Council on Disability appointed by government and
NAD is a member of the Council. The council is supposed to give advice to the
government on disability issues. It's a meeting place. When I come to work in the Council
it works like this - the different Ministries ask or request advice from the Council, but the
Council can also raise issues that it wants to raise. But our main lobbying work is done by
ourselves, not through the Council. But we also have this system in Norway where the
government gives White Papers to the Parliament on many issues and they then establish
a committee to create the basic documents for this White Paper and our association is
often invited to be a member of these kinds of committees. So when we are given a
proposal or White Paper for the Parliament, we do our own paper on whatever the issue is
and then lobby for it within the Parliament within every single Ministry where they are
coping with disability issues. This is one of our major tasks in NAD to act as a lobbying
instrument for disability issues. We have said to ourselves that we should be very good at
describing the situation of disabled persons in Norway but we should be even better in
creating good solutions. So this is how we are trying to work. We have a main office with
70 fulltime employees and we also have a journalist on the staff and we are working to
raise awareness through media on the issues that we are eager to focus on within the
Ministries or the Parliament.
Q. In some countries there are problems because the people in government don't see
certain issues as "disability issues" or don't take into account people with disabilities
when they are passing legislation or making changes to the infrastructure. Is this the case
in Norway?
A. Actually I would say this problem is quite similar in Norway. There are many
activities going on really concerning every part of the population, but where disability
issues are not raised at all. And we are not invited to take part in a Commission or
whatever it is. Then we have to push and sometimes we succeed to be a member of such
a Commission and other times we don't. So then we have to push through the media and
through lobbying in the Parliament. And also many times we can get a very good solution
in the Parliament, stating very clearly that, for instance, the access to trains should be
accessible for disabled persons. But still when the results are clear, then we can see that
they did not follow up the statement from the Parliament due to what they call "technical
reasons." And this happens very often. For instance, we have a new train now from the
main airport in Oslo that will probably last for at least 40 or 50 years. They modified the
elevators into the train, but in doing so they made them so you could not use an electric
wheelchair in them because it would be too heavy. And this is a fact -- that in 2003 in
Norway, one of the richest countries in the world, we still have to raise awareness of
disability issues. And they are still saying we don't have enough knowledge and that is
rubbish. I mean we have fought for these issues for 30, 40, 50 years and of course they
have knowledge, but it is ignorance that creates such horrible situations when it comes to
accessibility in Norway.
Q. Do you have any legal type of human rights or civil rights law that requires them to
make things accessible, similar to the ADA?
A. No, but there is an ongoing process in Norway, this is in the main House now. We
have decided some years that our main focus up to 2006 should be new legislation based
on the Anti-Discrimination Act. And the government last year appointed a law
preparatory Commission and it's working now. It will deliver its report in 2004 and we
are hoping that they will advise the government to come up with an anti-discrimination
law. But it is a big debate and the present government is a right wing party and they are
not particularly interested in this kind of approach. So I think this will be a very big
debate and we have a long way to go to reach this. But the legislation when it comes to
access to new buildings is quite good -- the problem is to live up to the standard
according to the law.
Q. Is there any oversight or ability to monitor - can someone bring charges if it's not done
right?
A. Actually no there isn't. What we have to do is through NAD, we have to monitor the
situation and raise the issues by lobbying the politicians. We can bring individual cases to
court (there is only one court system in Norway) but it is very expensive to do this. One
of the reasons why we are asking for this new anti-discrimination act is that we want an
act that has with it an instrument to monitor and a governmental body that could monitor
and has the tools to both give fines and advocate. We don't want it just to be on paper -we want it to be powerful. Two years ago, we managed to get an anti-discrimination
clause in the employment act, but unfortunately there is no legal body who is monitoring
the law, there is no instrument to pursue the ideas behind the law. So we are not able to
say whether the law is functioning or not, so we have to have these kinds of instruments.
Q. Tell me a little bit about how your organization is funded?
A. When it comes to the work we are doing nationally within Norway, 80 percent we
have to make through our own income generating projects. Approximately 5 percent
comes from our membership fees and 15 percent from support from the government. We
do mainly two things to raise our funds - we run a big national lottery. We created a
lottery that people wanted to buy not because we were behind it, in fact, we did not tell
anyone that NAD was behind the lottery because we were very afraid that this could
create some sort of charity approach toward the lottery and we did not want that. And the
other thing we do is that we run several slot machines. But the slot machines will now be
monopolized in Norway, the government will take over all of them. Now, we will have to
go out in ordinary business to create our own money. We are facing a huge problem now.
In our international development work, for every dollar we spend, the government gives
us five more. So we spend 10 percent and the government is giving us the rest. When we
started [our international development work] in 1981, there were three of us - the blind
union, the organization of the mentally retarded, and NAD. We had no experience in
international development work, so we started in cooperation with the Red Cross Society
in Norway. And they followed us for five years and then they left us. So now it is run by
Disabled People's Organizations themselves. And what we did was to establish an
alliance, what we called the Atlas Alliance, in Norway. Now the Atlas Alliance has nine
member organizations, all DPOs. Through the alliance, we are now running projects in
approximately 20 countries, 40 projects, for an annual cost between 12-15 million US
dollars. So it's quite substantial. Every tenth year, we can apply for the TV campaign in
Norway. Every year there is a TV campaign one day of the year in October where
approximately 100,000 collectors visit every single home in Norway and collect money.
We had this campaign last year and we raised 145 million Norwegian Kroners. Every
single penny of this will be spent on international development because we are not
collecting money for disability issues in Norway. They consider that to be too much of a
charity approach, but to collect this money for international solidarity work is okay. We
have in our bank account 145 million Norwegian Kroners (almost $2.1 million US)) and
that represents the 10 percent that we are going to use. It's approximately two to three
hundred million dollars that we can spend for the upcoming 10 years. We collect 10
percent and the government gives us the rest.
Q. Does your organization ever approach Members of Parliament to introduce legislation
on disability issues? Can you ask the Parliament for a White Paper, etc?
A. We do it almost on a daily basis. The president of NAD and I are in the Parliament
almost every day, talking to and visiting individually, talking to parties and going into the
Committees of the Parliament to lobby and to advocate for disability issues. We do this
on a daily basis. What's quite funny or very good is that a big newspaper in Norway in
April or May did a monitoring for the last year concerning who were the best lobbying
bodies in Norway. Number one was the huge labor organization and second was NAD.
We were even better than many of the really heavily financed ones, like shipbuilders.
This is what we mainly do. We are serving our members and we also provide a lot of
courses trying to help them in their own community to push their local issues. Our main
strategy is to raise awareness among our members on the social model of disability, based
on the thinking of Michael Oliver and Vic Finkelstein in the UK. This is one part, the
second part is the lobbying part, and thirdly we do a lot of creative solutions when it
comes to housing, especially creating accessible environments. We have architects on our
staff, a lot of technical persons and we produce a lot of information both to raise
awareness and to give examples of good solutions.
Q. Do you have local offices, too? The 70 people on your staff, are they all in Oslo?
A. They are all in Oslo. And up to now we had 19 districts, but now we are recreating
this. So we are now making nine district offices to make them a bit stronger then today.
Before May of next year they will all be running. In addition to that, we have from time
to time 10 people in our international development program.
Interview with Sebenzile Matsebula, Director of the Office on the Status of Disabled
People (South Africa)
Q. Tell me about how your office works? It's at the executive level, correct? This is
unusual, isn't it?
A. Actually, South Africa was the first country to use this model. Since then Mexico is
the other country that has a similar structure, and more recently Namibia has adopted a
similar structure in the office of the Prime Minister. The way it operates within the South
African context, I won't speak for the other countries, is that it is a unit set up in the
Presidency to coordinate, to facilitate, monitor and evaluate programs that serve or are
designed to integrate disability into mainstream society. That's the overall mandate of the
office - the coordination unit, the facilitation unit, and also to monitor and coordinate. We
are not a service delivery unit because that is a function of each and every line-function
Ministry or government department, for example, the Department of Heath. Their role is
to ensure that people get proper health care facilities, etc. The Department of Labor has
its role, etc. But our responsibility is to make sure that it actually does happen. So in a
sense it's like a policing body.
Certain things need to happen, and sometimes things don't happen in government for
whatever reason. And the reason why the office is located in the highest office in the land
is because a Minister that gets a direction from the President on a particular issue that
they are not serving or performing on, will certainly be forced to comply. Otherwise if
every Minister was left to do whatever he wanted to do, there's always a reason
(sometimes a legitimate, valid reason) why they cannot do it. But in this particular case
it's set up to ensure that what government sets as policy about integrating disability into
mainstream society does happen as integration into mainstream society. That is our focal
reason for existence, to ensure that disability is integrated into every facility of
mainstream society in South Africa.
Q. Where does proposed legislation come from?
A. It comes from Parliament. Legislation is the job of Parliamentarians, and that is why
(as the Minister was alluding to this morning) that South Africa has the highest number in
the world of Parliamentarians with disabilities. It is precisely because it's part of an effort
to promote integration of disabled persons, and therefore in Parliament every piece of
legislation that goes through is supposed to ensure that disability is part and parcel of that
legislation.
Q. So everyone who's a Member of Parliament knows that he or she is supposed to be
thinking about disability no matter whether they are transportation, or commerce, or
agriculture or whatever.
A. Precisely. But over and above that the whole idea of having Parliamentarians with
disabilities is because they experience disabilities, so someone without a disability might
want to say, "Ok, we want to ensure that disability is part and parcel of this particular
legislation" but because they are not disabled they will not necessarily want to make sure
that that piece of legislation actually goes through. So the Parliamentarians with
disabilities who are part and parcel of that machinery make sure that it does happen.
Q. Are there goals established across the board for the various governmental agencies,
and if so where do those come from?
A. Since independence in 1994, in every structure created since that date, the South
African Government has ensured that there are disabled persons in those structures, for
example, in the Human Rights Commission, the Gender Commission and the Youth
Commission. Moreover, the people that would then be deployed to those various systems
would come from the disability movement. So the disability movement would be
informed through various channels that the Commission that goes through Parliament and
the President would inform them that this process was going through. So they would say
that they were selecting Commissioners for a particular Commission, can you make sure
you give us a number of names that you recommend, and then those names would be
submitted and go through the normal routine that everybody goes through to ensure that
they are qualified to serve in that Commission. So they actually come from the disability
movement.
Q. Are there specific numerical goals for, let's say, employment or education?
A. The only quotas we have are for the employment of disabled persons. The government
has said that by the end of next year, two percent of the staff of every agency and
company should be disabled persons and the Department of Labor has set up a process to
ensure that it happens. There's registration of companies, they have annual sessions
where service providers go out and check on how many disabled persons that they
employ. But it's not only disabled persons that this particular system is following. It's part
of the Employment Equity Act that caters to all disadvantaged people, including women,
black people and disabled persons. But then over and above that, there is the 2 percent
that speaks purely to disabled persons being employed.
Q. Would it then be the role of the Office of the Status of Disabled People to go back and
monitor, to look at each company and see what is happening?
A. The primary monitoring function for that is with the Department of Labor, because
their main function is to monitor labor issues. And then they report to us. We have
quarterly reporting sessions with all governmental departments so that's how we are able
to keep tabs on the development of all processes, not only at the Department of Labor but
all processes that go on.
Q. From where does your office receive financial support?
A. From government.
Q. If you wanted to undertake a new initiative, say a public relations campaign, can you
do that? Is that within the function of your office?
A. Well, that particular one, a public campaign, we are running a public awareness
campaign because that's one initiative that doesn't fall within any particular department or
scope. So we plan for that. South Africa has a three-year planning process, so we'll plan
that and in the third year, the government will provide the necessary financing for that.
We are embarking on that this year. It's our first big public awareness campaign. And all
our funding will come from the government.
Q. Do you work at all with informing the private sector - do you do outreach to them?
A. Well, because we are just starting with that project [the public awareness campaign],
we will. That's in the plan. The plan that we have will certainly incorporate everybody in
society but we want to target mainly the corporate sector because they're the people with
the money, they're the people, outside of the government itself, that are big employers. So
we're going to target our program to them so they can understand what disability is all
about and employment of disabled people - training, etc. It's unfortunate because I really
can't speak about it because we haven't actually started, we've got plans but we haven't
started yet. We just recruited a manager. But we will certainly be targeting business as a
primary role player.
Q. What has been a success in the US is to highlight those employers who do a good job use them in the ad campaigns, etc.
A. We are already doing that on a provincial level. Our Office of the President is at the
national level but we also have provincial offices, also called Office on the Status of
Disabled Persons, in every province. They are already running those campaigns where
they will have awards - an annual event - where they'll have particular categories,
whether corporate sector or whatever, where they will recognize the effort of companies
or whichever category they have selected that year to recognize their efforts in promoting
the rights of disabled persons, including employment of disabled persons.
Q. Do you have an oversight rule with regard to other departments?
A. Precisely. As I said, we have required reporting systems. What we have is an
integrated national disability strategy. It has a whole set of recommendations at the back
for every government department that say these are the things that the government
departments need to do. It's not complete because it was done in 1996 and new ones have
since come on board, but at least that gives you a framework for what government
departments are supposed to do. So they would follow those recommendations and then
we at the national level work at what we call the Inter-Collaboration Committee on
Disability. In that Committee, we are represented by people who are nominated by the
Director Generals of each department to represent the department in that Committee. And
it is in that Committee where, at the beginning of the year, we'll have a planning session
where they'll come and report on their plans and programs for the year. Then four times
during the course of the year, they'll come and report to us on the progress so far on the
implementation of those various projects that they reported on [at the beginning of the
year]. So that's at the national level. We have a similar structure at the provincial level,
which is the Inter-Provincial Forum which also constitutes all the government
departments at the provincial level who come and report on their programs. Their plans
are critiqued - is this what the country really needs at this particular point? If it passes,
then they go ahead and implement and report on it quarterly. So that's the monitoring part
I was talking about earlier.
Q. With the issue of new policy - can your office suggestion legislation if you see a need
for it?
A. It works both ways because people who sit in Parliament are there to represent
constituents, so constituents will tell Parliamentarians, "This is the issue. What are you
doing about it?" And then Parliament calls us. We have regular reporting to Parliament
via a committee called the Joint Monitoring Committee on the Status and Quality of Life
of Youth, Disabled Persons, and Children and that Committee is headed by a disabled
Parliamentarian. Now that Committee will then call me or they'll call anybody from all
the other departments depending on the issue. And they'll ask if they are aware of the
particular process, and go and do something about it. Then the government official will
go back, because we have the resources to do research or whatever, and then
subsequently develop a policy. But you see the policies come from the Department. They
only go to Parliament for approval so that they go through as legislation.
We do the groundwork in terms of developing what the concepts, what the issues,
developing the policy. But it's only Parliament that will pass it as policy. They are not
necessarily the initiators of the policy. They are one part but the other part is us because
in all government, particularly in our office, we work to a large extent with civil society,
we interact, we attend their annual congresses, etc. so we are aware. They tell us what the
issues are, and then we'll take that back to our office and say, "this is what grassroots
people are saying, this is the need at this time." And then we'll develop this policy and
submit it to Parliament. It's challenging, and it's such a unique situation because you don't
find it anywhere in the world. But there is a historical reason why it was developed. But
it's not an easy thing to copy because it has historical reasons emanating from the time of
the struggle and the relationship that disabled people had with the African National
Congress. It's because of that the relationship was able to grow and to have the
recognition from the time of Nelson Mandela - it's the recognition and respect that it has
had and continues to have over the years.
First Disability Survey in Guatemala
By Silvia Quan (silviaq@intelnet.net.gt)
The efforts to quantify and characterize persons with disabilities have been minimum in
Guatemala; this has translated into an under estimation of the number and the severity of
the conditions, that persons with disabilities have confronted and still have to confront.
Though some questions regarding persons with disabilities have been included on the last
three National Censuses, the information obtained is insufficient, very variable, and
conflicting with respect to data from the World Health Organization.
In 1994, the National Population Census, conducted by the National Statistics Institute,
estimated the population of Guatemala as 8,331,874 inhabitants, of which 59,841 (0.72%)
present some type of disability. The reported number of persons with disabilities in
Guatemala, is much lower than the corresponding 10% estimated by the WHO.
In 2002, the same agency conducted a National Census, including only one question
regarding disability, in the household section. The purpose of that question was to
determine whether there was at least one person with disability living in the households
surveyed. Of the 2,200,608 households surveyed in 2002, an estimated 6.2% reported at
least one person with disability at home. Yet, these data are not sufficient to determine
the exact number of persons with disabilities in the country, much less what conditions
affect their lives, what their needs are, and their social and labor situations.
The importance of statistical information
The quantitative and qualitative statistical data which may be obtained regarding persons
with disabilities are necessary for an adequate designing of policies, programs, and plans
for the attention and inclusion of this population in the political, social, economic and
cultural participation levels of society.
It is evident that there is an urgent need for these statistics. The organizations of and for
persons with disabilities have told pertinent authorities about the importance of
information gathering instruments and their periodic use. But until recently, there had not
been a favorable response, not even from the National Council for Attention to Persons
with Disabilities (Consejo Nacional Para la Atención de Personas con Discapacidad,
CONADI). This situation reflects the lack of interest on the part of government
authorities in including persons with disabilities on the human rights agenda.
The first survey
Finally, after a long lobbying process and the strong interest of the Inter-American
Development Bank, for the first time in the history of Guatemala a national survey on the
situation of persons with disabilities is being conducted. This survey is one of the
components of the main project of the Presidential Secretariat of Social Welfare
(Secretaría de Bienestar Social de la Presidencia). The project is part of the goals of the
Millennium Summit of the United Nations and the Inter-American Development Bank in
the region: reduction of poverty, in this case, by conducting actions to benefit the
population with disabilities.
It is important to know the background for such a project, before analyzing the objectives
and results expected, even by disability related organizations, from this survey on the
situation of persons with disabilities. We must remember that the project of the InterAmerican Development Bank aims to foster poverty reduction programs. That survey has
been designed to determine, mainly, what is the social and economical situation of
persons with disabilities, among those identified at the 2002 National Census.
The survey will provide information on: housing and household conditions, level and
type of academic achievement, type of disability, health and rehabilitation service used or
being used, employment status and income. One of the major expectations of the
disability sector, with respect to information gathering, is that there would be more
relevant information available regarding deficiencies and personal characteristics. But it
seems that we will be deceived again.
Another of the weaknesses of this survey process is the lack of participation provided for
the organizations of and for persons with disabilities. Very few people know that this
instrument will be used. And, since persons with disabilities were not included during its
elaboration, the disability movement was really excluded from having an impact on the
content and the scope of the survey.
Providing follow up for the inclusion of persons with disabilities
Due to the problems identified, the disability movement must be supportive and take
action regarding this project. Some of the measures that could be adopted to compensate
for eventual deficiencies:
1) Start a direct dialogue with the authorities and the government agency in charge of the
survey.
2) There must be an effective effort to inform the general population, particularly persons
with disabilities, regarding the survey and its importance, the need for people to
cooperate by providing the required data.
3) The movement of persons with disabilities must follow up and monitor the process and
its results. This to ensure that the proper public policies, programs, and projects will be
put into practice to improve the lives of persons with disabilities.
4) Increase the participation of the organizations of and for persons with disabilities in
conducting the national survey, aim at a wider coverage and objectives, quantify and
define the characteristics of this population on a continued basis.
This is just one first step of many that must be taken in order to achieve full inclusion of
persons with disability within the policies and programs of the State. We will be waiting
in expectation the results of this first national disability survey in Guatemala.
Argentina: President of a Social Institute Fined for Not
Complying with Disability Law
From INFOCIVICA, Productora de Noticias Cívicas
In Argentina, a judge decided to fine the President of the Institute for Medical Assistance
of Buenos Aires (Instituto de Obra Médico Asistencial de la Provincia de Buenos Aires,
IOMA), Alberto Mazza. This case, in the defense of the rights and protections entitled for
a child with disabilities, is conducted by a member of the Network of Voluntary Lawyer
of the Foundation for Citizen Power (Red de Abogados Voluntarios de la Fundacdión
Poder Ciudadano).
In Argentina, the Honorable Luis Arias, the Judge of the Number 1 Administrative
Contentious Court of La Plata, ruled that the President of the Institute for Social
Assistance (Instituto de Obra Médico Social de la Provincia de Buenos Aires, IOMA),
failed to provide the ordinary services of the institution, pursuant to the corresponding
disability law. Mr. Maza must pay a fee of 1,600 pesos, corresponding to 50 pesos for
each day that the request of the plaintiff was delayed without justification. If the
President does not comply, his salary will be retained.
This ruling was made as part of a legal action filed by Verónica de Miguelez, with her
lawyer María Inés Bianco, of the Voluntary Lawyers Network for Citizen Power ( Red de
Abogados Voluntarios de Poder Ciudadano). This legal process was begun to defend the
rights of Verónica´s daughter and her legal rights as a child with disabilities, requiring the
support from the Institute, pursuant to the pertinent disability laws and regulations.
"The innovation introduced by this ruling is that it places the responsibility upon the
President of the Institute and states that he is legally in contempt" says María Inés
Bianco, lawyer "This ruling was a success and, shortly after it became public, the
President issued the authorization of the plaintiff's original request filed at the Institute."
Veronica de Miguelz, a teacher and contributing member of the Institute, works in
Escobar and has a three year old daughter with a neurological disability. Because the
Institute for Social Assistance failed to comply with its obligations, the mother found that
the Institute did provide her of the promised timely financial support when her child
became sick. "Many times in the past I had to get the money from other sources. Now the
Institute has given me the money, as the judge ruled." Mrs. de Miguelez told us that her
daughter has take medical examination in the following weeks.
Thanks to the intervention of the court and the fee imposed, Daiana will be able to pay
for her medical, psychological, trauma, and hearing treatment she is entitled to, at the
Fleni Rehabilitation and Therapeutic Institute, including the special milk, all of which
had been denied by the Institute for Medical Assistance of Buenos Aires (Instituto de
Obra Médico Asistencial de la Provincia de Buenos Aires, IOMA).
The Disability Law No. 24091 establishes that the institution for social assistance must
cover all the expenses incurred by their members, as mandated by the applicable
regulations, and that such coverage extends to the payment of health related expenses,
including professional fees, medications, or any specific products not provided by such
agency or manufactured in the country.
Nevertheless, the institution would always present excuses for not authorizing the
corresponding funds. The mother said: "One time I was desperate. My daughter needed a
nasogastric catheter and hospitalization. Because it was an emergency I had to take my
daughter to a private provider, and the institution never assumed its responsibility for
paying for those health related emergency expenses." That is why she requested support
from the Network of Voluntary Lawyers for Citizen Power.
Thanks to this ruling, Diaina will have better diagnosis and medical treatment, and a new
bed. The fee of 1,600 pesos, imposed by the court upon the president of the Institute, will
be collected by the mother of the child.
The Network of Voluntary Lawyers of the Citizens Power Foundation, is a large team of
legal professional dedicated to support groups of the civil society. Now the Network is
expanding to other provinces where legal advise is need by vulnerable sectors of the
Argentine population.
For more information, call Verónica de Miquelez at (03488) 429491 or (03488) 445472
Lawyer María Inés Bianco may be reached at: 4328-7506 o (154) 4194755.
INFOCIVICA
Productora de Noticias Cívicas
Fundación Poder Ciudadano
www.infocivica.org
www.poderciudadano.org
4331 4925
Piedras 547 timbre 2, (C1070AAJ)
Ciudad de Buenos Aires
Argentina
Protection of Disabled People's Rights in Georgia:
Highlights 1988-2004
By George Kokhreidze, former Member of Parliment, Tbilisi, Georgia
(parl635@yahoo.com)
The breakup of the former Soviet Union, internal military conflicts, and disruption of the
social environment in the 1990's caused quite a significant increase in the number of
disabled people in Georgia. Experiments, carried out in the governing of the country's
political and economical life, created after-effects, such as corruption, and lack of
organization. Most of all, these negative consequences have greatly affected the
unprotected population of disabled people.
During these years the necessity of protecting the rights of disabled people became clear
and nongovernmental organizations of disabled people were founded and became active.
The creation of disability NGOs, supported by international organizations, has played a
significant role in protecting the legal rights of disabled (and not only disabled) people.
Growth of NGOs
The first NGO of disabled people in Georgia, the "Association of Disabled People" was
founded in 1988. Then the Sports Federation of Disabled People was set up in 1990 and
attracted many active participants due to its specific focus, and because sport is
considered to be one of the best means of rehabilitation for disabled people. With the help
of the Sports Federation, some disabled persons while participating in different programs
abroad, gained experience and became knowledgeable about programs and laws
protecting human rights and started fighting for the rights of disabled Georgians. In the
beginning, although there were only a few activists, they managed to take disabled people
out of their houses and encourage them to participate in different competitions (armwrestling, chess, draughts, backgammon, table tennis, marathons, water skiing, mountain
climbing, etc). In addition, they developed cultural events in the communities and
educational programs on TV. All of these activities were carried out with great
enthusiasm and were based on personal interests.
In 1995 the "St. Queen Tamar Order of Veterans and Handicaps" and the "League of
Disabled People" successfully lobbied for legislation on the social protection of disabled
people. The sponsors of this legislation, with financing from the British organization,
"Oxfam", traveled throughout Georgia and held a congress nine days before the adoption
of the legislation. On 14 June 1995, Parliament adopted the legislation on social
protection of the disabled people and in October Parliament also adopted legislation on
the social protection of veterans. Organizations of the blind and organizations of the deaf
became active. After the adoption of these laws, the number of disability NGOs increased
more than the activity of the disabled people. Privileges that were contained in these laws
were also conferred on other unmotivated groups through different resolutions, decrees
and instructions through an over-use of political lobbying, thereby resulting in the abuse
of these privileges. Therefore after six months, all of the above-mentioned legislation,
including the law about disabled people, was cancelled. The cancellation of these laws
lasted 18 months and those disability organizations that truly represented and united
disabled people really suffered a lot.
In 1995-1996 the League of Disabled People, with the help of foreign partners, created
many new jobs for disabled people. According to the assessment of international
organizations, it proved to be the most active disability NGO in the Caucasus region
during those years.
The successful programs of the League of Disabled People resulted in a Presidential
decree, which ordered all State Departments to enforce each clause of the law about
social protection of disabled people within its competence. Unfortunately the President's
instructions were not fulfilled and therefore the necessity of uniting the efforts of all
disability NGOs became apparent, since everyone understood that together they could
achieve more.
Successful civil actions result in new law
On 14 December 1996 the Coordinating Council was founded, which consolidated the
work of 22 disability organizations in a well-defined campaign for their rights. On the
same day representatives of the League of Disabled People started a hunger-strike, which
after 3 days, resulted in an agreement between Parliament and the Coordinating Council
that the rights of disabled people would be considered in approval of the Federal Budget.
In June 1997, the Coordinating Council had to organize another hunger strike, since the
government was not fulfilling its obligations. After two years of struggle, in 1998 a State
Budget law was adopted with language declaring that any disabled person who wishes to
live an active life can integrate into society.
From 1998-1999, while operating under constant unfavorable conditions from State
functionaries, the law more or less worked for eight months. In July 1998, when State
structures started stealing money from the accounts of disabled people, the Coordinating
Council again had to conduct another hunger strike to focus the attention of the society
and government. That action was only partly successful with some of the money being
returned to the disability organizations and legal efforts continuing to demand the return
of all the money.
Accomplishments while State Budget Law was active
In support of an active life for disabled persons program; the roads in six districts of
Tbilisi were adapted for accessibility; 15 adapted buses were imported; a production shop
of wheelchairs and subsidiaries were created where disabled people were employed and
about 1000 wheelchairs produced. Approximately 100 wheelchairs were imported from
abroad. Using active-type wheelchairs and with the help of local and foreign instructors,
100 persons received two-weeks of mobility training, 15 of them received certificates as
"active life" instructors. Regional organizations were established and some State finances
were assigned to them.
New services, businesses & access to assistive technology
Nowadays, these organizations have become quite strong lobbies to the local authorities.
Disabled persons with hemophilia have been provided with the necessary medical
supplies. Approximately 20,000 walking-sticks and crutches have been imported. Seven
teams of amputee football players were founded and the national team has won 4 th place
in Manchester, England. Three wheelchair volleyball teams of wheelchair disabled
people were created; and two world champions emerged in arm- wrestling (Cairo). In
addition: two integrated nurseries were founded; about 50 conferences and seminars were
held on different topics, two Special Olympic games were organized with various
educational programs for the parents of disabled children; three integrated art schools
have been launched; construction standards have been prepared for creating an accessible
environment; educational literature for disabled people has been translated and printed;
two studios have been established, where disabled children learn art; directory address
computer software has been created, in which disabled people were involved and these
software programs are now being used by official organizations and private persons;
three businesses for the blind and two businesses for the deaf have started operating,
three businesses for people with mixed disabilities have been established; two Charity
concerts have been held; for blind children audio educational material has been made;
200 disabled children have received computer literacy courses; and 200 deaf children
have received hearing aid equipment.
Improving access to governance, democracy & education
In addition, representatives of the Coordinating Council have visited across the civil war
conflict zone and established working relationships and provided assistance to local
disability NGOs. Compared with the 1995 elections, 55% more disabled people took part
in the 1999 election. Since 1999, disabled people do not have any problem in continuing
their studies at high schools and a de-institutionalization program for disabled children
has been started.
Increased access to medical rehabilitation and assistance
Some 15 surgical operations at an approximate cost of $ 25,000 have been carried out
abroad and more than 200 operations have been carried out in Georgia. Ten inexpensive
(approximately $2000) surgical operations were conducted in Yerevan, Armenia and 20
persons were sent to the Crimea for rehabilitation. At least 40,000 children in eastern and
western Georgia received free medical screening and 40 of those children received urgent
operations. More than 15,000 disabled persons received some financial help.
Lack of public awareness makes progress vulnerable
Unfortunately the Georgian public was not informed about these successes in the lives of
disabled persons. This lack of public awareness in our society was exploited by a group
of people who were interested in abolishing the law, and they successfully conducted a
public relations effort to restrict the activities of disabled people's NGOs.
By the year 2000, the economic tools of the Federal Budget law, which were used to
create many programs for disabled people, were abolished. However, because Disabled
Persons had their own representative in the Parliament, they continued to have the right
to initiate new legislation. A representative of disabled people's organizations was
managing the subcommittee of Georgian parliament responsible for the affairs of
disabled people. Even with a disabled representative in Parliament during the year 2000,
none of the proposed legislative initiatives was successfully brought to the floor from the
committee meetings. A draft Disability law, which was signed by 178 deputies, was not
even debated in the open Parliament session.
The majority from the ruling government party has ignored the law on "protection of
social rights of disabled people" and unfortunately this situation continues today. It is
nothing but the discrimination of disabled people. Parliament has to discuss these matters,
since it is a democratic institution and to have democracy and discrimination together is
impossible. "If one country has both, discrimination and democracy at the same time - it
is discriminated democracy..." (From Parliament session, 2000)
Some inroads made in spite of setbacks
Despite the successes and failures, 1998-1999 were very important years in the life of
disabled people in Georgia and many disabled persons became active in this period.
Additionally, part of the unmotivated public has started thinking about the problems of
disabled people, sometimes due to the economic hardships, sometimes with sincere
compassion. This is a real breakthrough in Georgian mentality. Disabled people could be
seen in the streets, in transport, cafes, theatres and cinemas, stadiums and other gathering
places. Disability organizations have gained important experience and quite expanded
intellectual resources. As a result they have been quite successful in their activities, even
though there was no support in the year 2000 and very little support in 2001-2003 from
the State. During these three years using their own resources and sometimes with the help
of international organizations, they have adapted 10 secondary schools, carried out
integrated and inclusive studies and created an integrated swimming pool. The
Coordinating Council member organizations have participated in 30 international
seminars and conferences. One more integrated nursery was established and the
remaining materials from the wheelchair production activity have been used to create 50
wheelchairs. Some 10 sporting events have been held and 250 children have undergone
computer training, including special training for 25 blind children. For the children with
limited hearing, a school of enunciation has been founded and teachers are undergoing
training in Croatia.
Due to the activity of the NGO sector and with our lobbying efforts during the Budget
process of 2001, a micro-projects competition for the employment of disabled people
resulted in the funding of 40 programs with small grants (each GEL 25,000). Many
previously unknown and inactive disabled people have participated within those
programs.
Founding of Coordinating Council, new laws & resolutions
In 2001, thru the initiative of NGO organizations of disabled people, Parliament adopted
a resolution to establish a Coordinating Council under the President within two months.
The aim of establishing this Coordinating Council was to have a consulting body to the
President, which would encourage the government to carry out its policy towards
disabled people based on the recommendations of the active disabled population.
However, it took more than one year for the government to fulfill this resolution and on 8
May 2002, the Coordinating Council was founded. Since then, it has played an important
role in establishing anti-discriminatory policy on the basis of disability. In 2003, four
anti-discriminatory laws and the President's five resolutions have been adopted.
In June 2001 after eight months of discussions, the legal term "invalid" was changed to
"disabled person". The reason for the change of legal term was that people with
disabilities need equal opportunities and despite our economic hardships, the
international laws on human rights have no exceptions for any country. The law of social
protection of disabled people unifies similar principles. During the same Parliament
session clause 32, which was abolished in 1997, was reestablished and the new version
was better than previous one!
On 7 December 2001, Parliament adopted the law concerning medical and social
appraisal. According to this law, restrictions on the employment of persons with
disabilities have to be defined not only from the medical point of view, but also from
equal opportunities. The new law has eradicated the legal terminology, "incapable of
work". Therefore many employment restrictions, where incapability for work was the
reason to fire person, have been abolished. This was very important. With this advance in
the right to employment for persons with disabilities we can think about various types of
insurance, such as insurance against disability.
Coalition for Independent Life formed
According to the Parliament's resolution of 2001, on 8 May 2002, the national
coordinating council under the State Secretary was founded. In the summer of 2002, the
coalition of non-governmental organizations of disabled people and veterans (Coalition
for Independent Life) was founded, which aims at supporting independence and welfare
of disabled people and veterans in Georgian society.
Main activities of the Coalition:
• Support of disability organizations whose activities are directed towards protection of
the legal rights and opportunities of disabled people.
• Destroy stereotypes about disability and disabled people and to establish positive
public opinion through public awareness campaigns.
• Support the integration of disabled people and their family members into the
country's political, economic, social and cultural life, and their participation in the
policy decisions regarding disabled people.
The philosophy of independent life, which is the basis of the coalition, directs disabled
people to set the policies and activities of the coalition for themselves.
Independent life - it means to make independent choices, to take risks, make mistakes and
make decisions. Independent life - it is the person's right to be an integral part of active
social life and participate in their country's social, political and economic processes. To
have the free choice and option to use residential and municipal buildings, transport,
communications, insurance, employment and education. To become really independent, a
disabled person has to overcome many difficulties. These difficulties could be visible
(e.g. architectural surroundings) or invisible (people's attitudes). If we eradicate these
difficulties, it will be possible to make the first step, to live a life of full value, to work
and have a family, to raise children, to participate in sports or politics etc.
On 14 November 2002, the Coalition organized a legislative forum where a package of
anti-discriminatory draft laws and anticorruption ideas were presented to the invited
government representatives. It was for those that disabled persons would participate in
anticorruption and anti-smuggling activities, which would help save the State hundreds of
millions of GEL. During the second forum held on 2 May 2003, the government
expressed its readiness for the execution of the project.
Change of government in 2003
After the peaceful overthrow of the government in December 2003, called the "Rose
Revolution," new government officials have assumed control and this project has
temporarily stopped.
As a result of the Coalition's activity, the State budget of 2003 implemented several
disability integration programs with the direct participation of disability organizations.
New projects
State program of 2003
Today the Coalition, within the State program of 2003, entitled "Support to social
adaptation of disabled people", carries out six different projects:
• "Informing society about the matters of disabled people";
• "Supporting integrated education";
•
•
•
•
"Supporting independent life of disabled people";
"Supporting participation of disabled people in cultural and creative activities";
"Supporting participation of disabled people in sports events".
"Social rehabilitation of disabled people and veterans and the prevention of
disability".
As a result of the Coalition's activities, a President's resolution announced June 14 as a
day of protection of the rights of disabled people. On that day a concert sponsored by the
coalition served as a background for the activities celebrating the event. Antidiscriminatory supplements to the criminal code and administrative code, which entered
into force on 1 December 2003, are also credited to the disability NGOs. At the same
time supplements to the law on building construction have been adopted, mandating that
construction carried out for accessibility is free from taxation. These developments have
improved disabled people's legal conditions.
New emphasis on accessible democracy
In summer 2003, the Parliament adopted changes in the election code in order for blind
persons to be as independent as possible while voting. Election materials were made
accessible to them by being printed in Braille. For deaf persons a public campaign is to
be carried out by special translation. For persons using wheelchairs, the law requires easy
access at electoral districts:
...If within electoral district there are disabled people, who are using wheelchair and they
have addressed election committee not later than 25 days before voting day, the
committee is obliged to provide temporary, easy access for them (Clause 50, Article 2)
...If within electoral district there are blind people and the information about them is
given to election committee not later than 45 days before voting day, committee is
obliged to prepare part of ballot-paper with special technology, that allows voters to fill
them independently (Clause 51, Article 2).
...While broadcasting information about election campaigning, State TV companies are
obliged to give the above sound information using special technologies for the people
with limited hearing (Clause 66, Article 4).
Soldiers returning from Iraq and Afghanistan critique
disability benefits system
The Associated Press recently reported that soldiers returning from Iraq and Afghanistan
are finding that fewer than one in ten soldiers who become sick, injured or wounded
receive the long-term disability payments they request. Additionally, up to one-third of
injured National Guard and Reserve veterans returning from Iraq and Afghanistan must
wait at least four months to find out if they will be compensated. The military's disability
system, like workers' compensation and long-term disability in the private sector, only
pays people benefits when they have illnesses and injuries that are job-related, therefore
only evaluating ailments that make a soldier unfit for duty in his or her specialty.
Although the Veterans Administration compensation system considers all service-related
medical conditions, it is taking approximately 6 months days to make initial disability
decisions, and recipients cannot benefit from both systems at the same time. To read the
entire article online, visit: http://www.newsday.com/news/nationworld/nation/nyusinju023915613aug02,0,3802367.story?coll=ny-nationalnews-headlines .
Governance Briefly
Compiled and edited by Jennifer Geagan, World Institute on Disability
(Jennifer@wid.org)
U.S. Department of Justice Launches Disability Rights Online News
The U.S. Department of Justice recently launched an online monthly newsletter on
disability rights. Issue #1 June 2004 includes information on a recent U.S. Supreme Court
ruling on an individuals' right to challenge inaccessible courts, ADA mediation, a
checklist for polling place accessibility and much more. For more information, please
visit http://www.usdoj.gov/crt/ada/disabilitynews.htm .
Canada elects first quadriplegic MP
Newly elected to the House of Commons, Conservative MP Steven Fletcher hopes to
break new ground for Canadians with disabilities as Canada's first quadriplegic MP. The
32-year-old, who was the youngest president of the Manitoba Progressive Conservative
Party, is ready to tackle his campaign priorities that include health care and education and
hopes to raise awareness among politicians and the news media about issues facing
disabled people. To read an article online, please visit
http://cnews.canoe.ca/CNEWS/Politics/CanadaVotes/2004/06/29/519540-cp.html .
Arts & Media
Freelance Opportunities for Disabled Latino Writers in
the U.S.
Proyecto Visión, the National Technical Assistance Center for Latinos with Disabilities,
is looking for reporters with first person experience with Latino culture and disability.
Reporters are needed to write articles documenting:
• success stories about how Latinos with disabilities living in the U.S. have found jobs
•
•
•
•
•
•
or advanced in their careers
experiences and challenges disabled Latinos face in obtaining education, training,
assistive technology, independent living services and jobs in both urban and rural
communities in the U.S.
Latino organizations reaching out to serve disabled members of their communities
disability organizations reaching out to serve Latinos
analyses of the situations of disabled Latinos in areas of the U.S. that have a high
concentration Latinos with disabilities
obstacles and failures, especially if something was learned from the experience
interpretation of how new federal initiatives or legislation impact disabled Latinos
Reporters will be expected to use a variety of techniques to obtain information including
conducting interviews and surveys, attending meetings, networking, and using local or
Web-based libraries and information centers. Articles will be short, practical, and may be
submitted in English or Spanish. Go to www.proyectovision.net to see sample articles.
Reporters will be compensated for their work on a per-article basis. Rate of pay will be
negotiated based on experience.
To apply, send a resume describing yourself and your skills, and a one-page article you
have written about disabled Latinos to Robin Savinar at robin@wid.org or call (510) 2514325. Applications will be accepted through August 31, 2004.
The National Technical Assistance Center for Latinos with Disabilities is a project of the
World Institute on Disability, supported by the Rehabilitation Services Administration.
2005 Superfest Film Festival Call for Entries
The Berkeley-based annual International Media Festival on Disabilities, Superfest XXIII,
seeks entries of works about disability or by media-makers with a disability. A 1/2 inch
VHS-NTSC preview format is required, along with a completed and signed entry and
release form. Entry fees range from $20 to $90.
Winners will be screened in the San Francisco Bay Area. To request entry forms, send a
legal size SASE to: Corporation on Disabilities and Telecommunication (CDT), P.O. Box
1107, Berkeley, CA 94701; Phone: 510-845-5576; Email: Superfest@aol.com.
Final entry deadline is: January 31, 2003 (post-marked). Early bird discount if mailed by
January 15, 2005. NOTE: Works produced since 1/1/98 are eligible.
For more information and an entry form visit: HTTP://www.madknight.com/cdt
Disability World Featured Artist Now Has Exhibit at
Health Museum
WASHINGTON-The National Museum of Health and Medicine is celebrating its new
exhibit, "Laura Ferguson: The Visible Skeleton Series," which examines issues at the
intersection of art and medicine as it takes the viewer on a journey into inner space. The
exhibit launched with a public program exploring representations of the less-than-perfect
body in art, medical history, and contemporary society on June 12 and will run through
April 2005.
In her work, Ferguson, a New York City artist with scoliosis, uses the imagery of her
own body and its anatomy to conduct an "artist's inquiry into scoliosis and spinal
deformity."
The exhibit features 50 multi-layered paintings based on medical images of the artist's
own skeleton, including a 3D spiral CT scan, made in collaboration with orthopedists and
radiologists. The exhibit also includes an array of source materials that invite the viewer
to share in the artist's visualization process: descriptive panels that show how the
artworks were made; a photo montage explaining the artist's unique floating-colors
process; drawings made from the artist's X-rays; an animation of her 3D scan; a computer
display that allows viewers to experience cutting-edge 3D imaging technology; and a
short documentary by award-winning filmmaker Peter Barton that takes a behind-thescenes look at the artist and the making of "The Visible Skeleton Series."
"Throughout history, art has played an important role in our understanding of the human
body," says Adrianne Noe, Ph.D., museum director. "Laura Ferguson's work gives
visitors a unique and intimate perspective of spinal deformity, while at the same time
exploring the emotions that accompany it. The combination of the museum's artifacts and
the artist's interpretation of them presents visitors with the rare opportunity to witness the
intersection of art and medicine."
Many viewers of Ferguson's work have found her visualizations of altered body structure
a powerful means of communication, insight, and healing. For example, Angela
Bevacqua, a scoliosis patient from Boulder, Colo., credits Ferguson's work with helping
her "see how a body with scoliosis can be beautiful, and to become more accepting of my
own body. I could never grasp how beauty could be intertwined with deformity, until I
saw your paintings." Orthopedic surgeons such as Vincent Arlet, M.D., associate editor
of "Spinal Deformities: The Comprehensive Text" and director of spinal surgery at
McGill University in Montreal, feel that Ferguson's art pays tribute to the orthopedic
profession by raising public awareness about spinal deformity. "For us orthopedic
surgeons dealing with spinal deformities, your drawings and paintings go deep to our
hearts," Arlet says. "Thanks to you, our specialty becomes recognized as an art and not
only as pure mechanics."
"My artwork is my visual autobiography," says Ferguson. "The exhibit shows how new
imaging technologies like 3D scans make it possible to see inside the living body with a
degree of detail that only dissection allowed before - but it takes an artist's imagination to
make the diagnostic data accessible and alive."
She began researching spinal deformities in the early 1990s, and her work is part of the
trend to foster medical humanities, to counter medicine's clinical detachment, and to give
patients a greater voice. Early in her research, she found that medical textbooks and
journals included mostly radiographic images and photographs of surgeries, which did
not give her enough information about the details and texture of the scoliotic spine.
In 2003, Ferguson was invited to Walter Reed Army Medical Center by Dr. David Polly,
then chief of Orthopedic Surgery and Rehabilitation, to consult on the Scoliosis Visual
Assessment Questionnaire, which was part of a larger study about spinal deformity at the
hospital. Dr. Polly was interested in her insights on the visual impact of spinal deformity.
While there, Ferguson visited the National Museum of Health and Medicine, where, for
the first time, she was able to use real scoliotic specimens as visual aids for her work.
During her visit, she made sketches of some of the specimens in the museum's collection.
The exhibit includes these abnormal anatomical specimens as well as two of Ferguson's
sketches and a finished drawing.
Ferguson's consultation with Dr. Polly at Walter Reed resulted in his contributing to a
special feature about "The Visible Skeleton Series" published in John Hopkins'
"Perspectives in Biology and Medicine" in spring 2004.
Selected exhibitions of Ferguson's work include: Woodward Gallery, the United Nations,
Lincoln Center, Cornell University Medical Library, and Noho Gallery, all in New York
City; Penn State University in Hershey, Pa., Michigan State University in East Lansing,
Mich., the Chicago Cultural Center, Nexus Gallery in Philadelphia, and the Brunnier Art
Museum in Ames, Iowa. Her art was commissioned by the American Academy of
Orthopaedic Surgeons for their traveling exhibit, "eMotion Pictures: An Exhibition of
Orthopedics in Art," which was on display at the museum in 2002, and by the Scoliosis
Research Society for the cover of "Spinal Deformities: The Comprehensive Text" in
2003. For information about Ferguson and "The Visible Skeleton Series," visit
www.lauraferguson.net.
The four specimens on display from the museum's anatomical collection will complement
Ferguson's visualizations by showing the reality of altered body structures. Three of the
specimens are scoliotic spines that were purchased by the museum between 1868 and
1916. The fourth specimen, a normal spine, will allow visitors to compare spinal
deformity with typical development.
"The severity of the spinal deformities shown in the scoliotic spines must have posed a
serious physical problem during life," says Lenore Barbian, curator of the anatomical
portion of the exhibit and assistant curator of the museum's anatomical collections. "All
four specimens will be a great complement to Ferguson's art, especially because her
paintings and drawings explore the connections among normality, abnormality, medicine,
and science."
The museum's anatomical collection is comprised of four types of materials: anatomical
and pathological skeletal specimens; fluid preserved gross anatomical and pathological
specimens; medical research collections containing slides, tissue blocks, and related
documentary materials; and miscellaneous material. The anatomical collection also
serves as a repository for historical and medically significant specimens, including
remains of Lincoln, Booth, and Garfield. This collection provides a rich source of data
for researchers in forensic medicine, anthropology, pathology, paleopathology, and
military medicine. Since the Civil War, the collection has formed the basis of hundreds of
studies by museum staff, AFIP staff, and outside researchers.
The National Museum of Health and Medicine was established in 1862 when U.S. Army
Brig. Gen. William Alexander Hammond, the U.S. Army Surgeon General, issued orders
that directed all Union Army medical officers "to collect, and to forward to the office of
the Surgeon General all specimens of morbid anatomy, surgical or medical, which may
be regarded as valuable; together with projectiles and foreign bodies removed, and such
other matters as may prove of interest in the study of military medicine or surgery."
Today, the museum is an element of the Armed Forces Institute of Pathology (AFIP), a
tri-service Army, Navy, and Air Force agency of the Department of Defense with a
threefold mission of consultation, education, and research. Within the AFIP there are 22
subspecialty departments with more than 120 pathologists. The board of the AFIP
includes the surgeons general of the Army, Navy, Air Force, and Public Health Service.
The museum's more than 24 million specimens and artifacts were the first in the country
to be registered by the U.S. Department of the Interior as a National Historic Landmark
and it is the only museum collection in Washington, D.C. with this status. The Secretary
of the Interior, who has designated only 2,340 districts, sites, buildings, and structures for
listing in the National Register, selected the museum's collection because of its
"exceptional value in commemorating and illustrating the history of the United States."
The museum is open every day except Dec. 25 from 10 a.m. to 5:30 p.m. The museum is
located at Walter Reed Army Medical Center, 6900 Georgia Ave. and Elder Street, NW,
Washington, D.C. Docent led tours are offered to walk-in visitors at 1 p.m. on the second
and fourth Saturday of each month. The web site is www.nmhm.washingtondc.museum
and the telephone number is 202-782-2200. Admission and parking are free.
A Barrier Free Exhibit in Colombia: The XIII Biannual
Arts and Visual Expressions of Persons with Disabilities
The XIII Biannual Arts and Visual Expressions of Persons with Disabilities in Medellin,
Colombia is being celebrated as part of the Ibero-American Year of Persons with
Disabilities. Here the Association of Friends of the Physically Disabled are exhibiting
works of art and visual expressions of persons with disabilities, from August 17 through
27 in Medellín, Colombia.
The event is open to artists without disabilities also. The objective is to share the interior
world with others through the artistic expressions. It is also an opportunity for artists with
disabilities to become better known and to expand their production.
The Association of Friends of the Physically Disabled recognizes the importance of art in
the rehabilitation process of persons with disabilities, and has developed programs using
artistic expression. The First National Painting Contest for Persons with Disabilities was
organized by the Association in 1978. The event is held every two years and now we
have reached the XIII edition. The exhibit is at the Sala de Exposiciones de Suramerica,
with the participation of many artists from all parts of the country.
For more information, please call or write:
Associación de los Limitados Físicos
Carrera 50C 59-8y7
Medellín, Antioquia
Colombia
Telephone (4) 2921140
Web: www.amigolimitado.org
Disabled Musicians on the Move in Madagascar
By Fela Razafinjato (fela.csm@netclub.mg)
[en français]
In 1998, Handicap International set up a project called "The Traveling Show" with the
goal of promoting the artistic talents of people with disabilities. The project organized a
national singing competition that attracted more than 20 bands. The juries seemed to
really have their hands full as the bands vied with each other, with their best lyrics,
arrangements, music styles and creativity.
As the final competition drew to a close, one jury member - a prominent and popular
artist - found himself saying: "I frankly didn't know that our disabled youth had so much
talent. I thought that they were better at handicrafts like embroidery, carpentry, or
sewing... ".
His words underscore the reality of the challenge facing people with disabilities each and
every day: rampant prejudice.
The 12 bands that were selected then took their act on the road throughout Madagascar's
six provinces to great acclaim. Their talents were justly appreciated and their success was
such that they were even asked to play at some private parties.
These bands have one thing in common, without prior agreement: they each have at least
one song about the rights of persons with disabilities. One of these songs became the
national anthem for the united movement for persons with disabilities. It's called "Mitovy
isika" or "We are equal" and is always sung at each event, prompting a high
representative of the government to publicly congratulate Berthieu, the disabled young
man who wrote and composed the song.
There is no doubt that Handicap International's "Traveling Show" has given many artists
the impetus to come together, but it is unfortunate to see that some time after the end of
the project, many of the bands have vanished, due to lack of support.
However, there are four bands currently trying to rise up in the world of Malagasy showbusiness.
They are:
• Hery sy Lydia band (physically disabled) which has just released its second album
• Fabien Jamba band (blind) with one album under their belt
• Liva sy Nirina band (blind) also with one album
• Malala band (physically disabled) working on their first album
Television channels and radio stations have been broadcasting their hits, which span
across various musical styles: slow dance, dombolo, tsapiky, salegy, reggae...
Once, we were present at a cabaret night to see the Fabien Jamba band and Beby, a
disabled singer. It took place in a hotel well known to the Tananarivian public, and the
atmosphere in the packed room was red hot.
As for us (two disabled couples), we proceeded to warm up the dance floor and the partygoers were quite surprised to see us dance!
The evening was a success, not just in terms of monetary profit but because the message
of sensitization was well received: people with disabilities are full-fledged citizens.
At this time, disabled artists cannot count on their talents to live on, since Malagasy
show-business is still fragile and it takes ample means to take part in it.
They are fully conscious of this and this is why they rely on other work as sources of
income, without forgetting their love of music.
According to Hery, their time will come and what's important at first, is for disabled
people to make their mark in the musical arena, as others have done in the realms of arts
and crafts, of education, of health...
However, he adds, "If there are well-meaning people who want to sponsor me in this
track, I am ready to make my career in it."
Disabled artists have enormous talents to share. Only the means are lacking, and they
need us to support them.
Madagascar : Les Artistes Handicapes Bougent!
By Fela Razafinjato (fela.csm@netclub.mg)
En 1998, Handicap International a mis en place un projet intitulé «spectacle itinérant» qui
a pour objectif de promouvoir les talents artistiques des personnes en situation de
handicap.
Il s'agissait d'organiser un concours national de chants auquel ont participé une vingtaine
de groupes formés à cet effet. Chacun s'est rivalisé de créativité, de style de musique,
d'arrangement et de parole et il semble que les jurys ont eu vraiment l'embarras de choix.
A l'issue de la phase finale de sélection, l'un d'eux -un artiste adulé du public- a fini par
dire: «Franchement, je ne savais pas que les jeunes handicapés possèdent un talent pareil.
J'ai pensé qu'ils sont plutôt doués sur des travaux manuels comme la broderie, la
menuiserie, la couture...».
Les propos de cet artiste confirment encore une fois la réalité à laquelle les personnes en
situation de handicap font face quotidiennement: les préjugés.
Les 12 groupes sélectionnés ont ensuite fait un spectacle dans les six provinces de
Madagascar et c'était une réussite. Leurs talents sont appréciés à leur juste valeur et il y a
même des gens qui leur ont proposé d'animer une fête.
Ces groupes ont un point commun sans qu'ils se concertent: chacun dispose, au moins,
une chanson relatant les droits des personnes ayant une déficience. Une des chansons
devient le hymne national du mouvement associatif des personnes handicapées. Elle a
pour titre «Mitovy isika» ou «Nous sommes égaux» et à chaque manifestation, elle est
toujours chantée de telle sorte qu'un jour, un haut représentant de l'Etat a tenu à féliciter
publiquement Berthieu, le jeune homme handicapé physique, auteur-compositeur de la
chanson.
Il est évident que le projet «spectacle itinérant» de Handicap International a donné lieu à
la naissance de plusieurs groupes artistiques mais quelques temps après la fin du projet, il
est regrettable de constater que beaucoup d'entre eux se sont eclipsés, faute de soutien.
Néanmoins, il y a quatre groupes qui essaient actuellement de s'imposer petit à petit dans
l'arène du showbiz malgache.
Il s'agit de:
• Groupe Hery sy Lydia (handicapés physiques) qui vient de sortir récemment son
deuxième album
• Groupe Fabien Jamba (aveugle) qui dispose, à son actif, un album
• Groupe Liva sy Nirina (aveugle) qui a, lui aussi, un album
• Groupe Malala (handicapée physique) qui est à son premier album
Les chaînes de télévision et les stations de radio diffusent leurs tubes qui sont de style
varié: slow, dombolo, tsapiky, salegy, reggae...
Un jour, nous avons assisté à une soirée-cabaret animée par le groupe Fabien jamba et
une chanteuse-interprète handicapée, nommée Beby. Elle s'était déroulée dans un hôtel
bien connu du public tananarivien et la salle bondée vivait une ambiance torride.
De notre côté, nous (deux couples handicapés) avons réchauffé la piste et quelle fut la
joie et la surprise des fêtards quand ils nous voient danser!
La soirée a connu un succès car non seulement, l'opération était soldée d'un excédent
mais aussi le message de sensibilisation est passé et bien reçu par le public: les personnes
handicapées sont des citoyens à part entière.
Pour le moment, les artistes handicapés ne peuvent pas compter sur leurs talents pour
vivre, étant donné que le showbiz malgache est encore fragile et qu'il faut avoir de grands
moyens pour s'y faire une place.
Ils en sont tout à fait conscients et c'est pourquoi ils font d'autres métiers pour subvenir à
leurs besoins, sans pour autant oublier leur amour musical.
Selon Hery, chaque chose a son temps et l'important d'abord, c'est de marquer la présence
des personnes handicapées dans le secteur musical comme d'autres font dans les secteurs
de l'artisanat, de l'éducation, de la santé....
Toutefois, a-t-il ajouté, s'il y a des gens de bonne volonté qui veulent me sponsoriser dans
cette voie, je serai prêt à m'y faire carrière.
Les artistes handicapés ont d'énormes talents à exploiter. Seulement, les moyens
manquent comme toujours et ils ont besoin de nous pour les soutenir.
Argentinian Newspaper Requests Equal Treatment for
Disabled Persons
From Newspaper "El Clarín", Buenos Aires, Argentina
Everyday three million Argentines with disabilities perceive how their situation worsens
because of the negligence of our institutions. According to Foro-Pro, an organization
composed of more than 500 associations for the defense of the human rights of persons
with disabilities, 90% of the short and medium distance public transportation, and 100%
of the long distance public transportation in Argentina is not accessible for persons with
disabilities.
Our national authorities do not comply with the approved public employment law that
requires filling 4% of government jobs by hiring workers with disabilities. At present,
they have only reached the level of 1%. On the other hand, 90% of persons with
disabilities are not employed and, of the three million, half live in poverty.
This x-ray is accompanied by many pending assignments that institutions must undertake
as priorities. If they acted accordingly, they would do more than restore their so damaged
credibility. Somebody has to assume responsibility, authorities just cannot continue
hiding. They should be correcting and compensating for unequal and unfair treatment.
Persons with disabilities expect political authorities to change present situations that are
causing so much hardship. Here the problems of disability are worsened by social
disturbances.
There needs to be gradual improvement to the accessibility of all the public transportation
system. And not just there, we need more hiring of workers with disabilities and better
health and education for all. There is the greatest problem, the greatest injustice: the way
in which persons with disabilities are treated. That is the real indicator, that is where
changes need to begin and produce a general attitude of inclusion.
Three million persons with disabilities in Argentina, are waiting for State to promote and
defend their rights, specially transportation, employment, health, and education.
Recent Publications and Resources on Media &
Disability
By Barbara Duncan (Bjdnycla@aol.com)
Disability in the Media in India: a study
Published 2001 by the World Association for Christian Communications, 357 Kensington
Lane, London SE11 5QY, U.K www.wacc.org.uk
A 32 page summary and analysis of an empirical study of selected newspapers, television
programs and Indian films. Articles were collected from 17 newspapers from 1 January to
31 March, 2000. Additionally 11 television channels were monitored for news and
features concerning disability. The report presents findings about "the abysmally low
coverage" within the context of the economic, social and cultural milieu of India. Anura
Goonasekera provides an analytical introduction, comparing this study with similar ones
conducted in the U.K., suggests that the findings reflect the actual weak situation of the
disability population in India, commenting that "The disabled are seldom shown as
ordinary people doing ordinary things," and outlines steps to be taken to expose the mass
media to disability issues within a civil rights context.
Disabling Imagery: a teaching guide to disability and moving image media, by
Richard Rieser
A book and 90 minute DVD with film clips, published as a package in 2003 by the UK's
Disability Equality in Education ( www.diseed.org.uk ) in collaboration with the British
Film Institute as a project of the European Year of Disabled People. The contents may
also be accessed through the BFI website: www.bfi.org.uk/disablingimagery
"The approach is from a disability equality and human rights perspective,which draws on
the collective thinking of the Disabled People's Movement."
Contents of the Book: introduction, ways of thinking about disability, teaching with
moving image media, treatment of disabled people in moving image media, activities and
student handouts, further resources including lesson plans, commercial films and DVDs.
The 90 minute DVD includes clips from Alison's Baby, Arko Ujyalo (Another Light),
Cousin, Better or Worse, See the Person - not the Disability, Together, Black Dog, Blind
Sensation, Raspberry Ripple Awards, Tell it Like it is, Sixth Happiness, the Chapeau
Room, Rhythm of Survival, The Egg & Gallivant. Package available for L20 plus L5
postage from DEE, Unit Gl, Leroy House, 436 Essex Road, London Ni 3QP, UK
White Sticks, Wheels and Crutches: disability and the moving image
Produced in 2003 by the British Film Institute, written and researched by Dr. Paul Darke,
132 pages, illustrated. Large print text version available by writing to Films Marketing
Dept., British Film Institute, 21 Stephens Street, London W1T 1LN, UK or email
marketing.films@bfi.org.uk
This delightful catalogue highlights the BFI's holdings concerning disability and "serves
as an introduction to the whole theme of disability and its representation on film and
television. It contains a number of short essays exploring possible definitions of disability
and the ways in which it can be depicted." As Dr. Darke writes in the introduction, "The
aim is to stimulate and inform the film/TV/disability professional or researcher that
disability is an exciting and culturally diverse element at the heart of moving image
culture throughout its history."
Partial table of contents: the politics of disability; disability in early and silent film 18951928; alcoholism, AIDS and disability; where are the 'real' disabled; short films by or
about disabled people; Genres (horror, melodrama, social realism, documentary); the
cripple, the retard and the loony - bad language and the 'idiot comedy' genre; the big three
- the blind, the deaf and the wheelchair user; gender, race and disability; disability and
sexuality; euthanasia, eugenics and institutionalization; and discussions about
contributions of Tod Browning, Mat Fraser, Nabil Shaban, Lionel Barrymore, Lon
Chaney, and Herbert Marshall.
Catalogue concludes with valuable listings such as recommended readings, disability film
festivals, subject and film indexes, and a disability film timeline of landmarks from 1890
to 2004.
Screening Disability: essays on cinema and disability
Edited by Anthony Enns and Christopher Smit, published 2001 by University Press of
America, 4720 Boston Way, Lanham, Maryland 20706 USA and 12 Hid's Copse Rd,
Cumnor Hill, Oxford OX2 9JJ, UK.
A 193 page anthology of essays by professors, assistant professors and researchers
working on their dissertations, this volume is described by its publishers as: "... offering a
concise overview of the work that has already been done in the field...and includes essays
that mark a potentially new phase in the study of cinema and disability by incorporating
elements of film theory."
In their introduction, the editors state their approach to the topic began in 1999 when
scholars in both Film Studies and Disability Studies gathered at the University of Iowa
for the first conference on cinema and disability to visualize where the study (of this
topic) had come from and where it needed to go. Similarly, this book is intended to
capture the past and explore the future, which explains why some of the material is
reprinted from other sources (e.g., Longmore's 1985 seminal essay on "Screening
Stereotypes"), while others appear here for the first time. One fascinating contribution is
a reconsideration of his approach by Martin Norden, author of the now classic 1994
textbook, The Cinema of Isolation. Other essays include the requisite reflections on Tod
Browning's film, Freaks ( four contributions); an intensely personal consideration of the
suicidal state of mind, as exemplified by characters in the 1980 Academy Award winning
film, Ordinary People and actors associated with the film; and some genre-reflections (
about disability depicted in recent horror and science fiction films. This is an interesting
little volume with very diverse points of view: if only it were in a larger font.
Points of Contact: disability, art and culture
Edited by Susan Crutchfield and Marcy Epstein, first published in 2000 by the University
of Michigan Press, Ann Arbor. A 297 page collection of 28 contributions addressing the
intersections of disability, culture and identity. Only a few selections are expressly about
media, but many encompass mass media depictions and resulting complications of
disability imagery in contemporary culture. Recommended in this regard are: The
Dramaturgy of Disability by Victoria Ann Lewis, But Roosevelt Could Walk:
Envisioning Disability in Germany and the United States by Carol Poore, The Beauty and
the Freak by Rosemary Garland Thomson, Afterthoughts on the Making of the Disability
Documentary "Vital Signs - Crip Culture Talks Back," by David Mitchell and Sharon
Snyder, and Relatively Disabled by F.D. Reeve
Call for Papers: DSQ Theme Issue on Freakery
Disability Studies Quarterly announces a Call for Papers for a theme issue on "Freakery."
Since the 1996 publication of the anthology Freakery: Cultural Spectacles of the
Extraordinary Body, the freak no longer occupies the margins of interdisciplinary
scholarly discourse. Many scholars, following Leslie Fiedler's framing of the "Tyranny of
the Normal" paradigm, have commented on freakery's applicability to and usefulness in a
wide variety of academic, social, and political discourses. This special issue of DSQ
seeks to represent the current use of freak research by today's scholars.
Scholarly papers (up to 6,000 words) in this theme issue should demonstrate familiarity
with disability studies perspectives. The guest editor seeks papers from a wide variety of
disciplines and national cultures. These may include, but are certainly not limited to,
performance/film/literary theory and criticism, ethnography, anthropology, history,
culture studies, theatre studies, sociology, psychology, photography, and linguistics.
Topics might include:
• Theoretical approaches to freak performance
• The role of the freak show in representations of race and class "Otherness"
• The rifts between freakery and the performance of "normalcy"
• The influence of the medicalization of bodily difference on freakery (or vice versa)
• The effect of freak performance on disability rights activism (or vice versa)
• The effect of freak performance on the lived reality of disability (or vice versa)
• Reflections on the works of Freud, Foucault, Erving Goffman, Leslie Fiedler, Robert
Bogdan, Elizabeth Grosz, or others regarding abnormality, stigma, and the spectacle
of the extraordinary body.
All research papers will be peer-reviewed. In addition to full-length scholarly
manuscripts, the editor seeks the following:
• Commentary or essays relating to freaks (3,000 words)
• Freak-related book, film, video or DVD reviews (1,000 words)
• Short fiction, poetry, or other topical creative works (length may vary)
Questions regarding the suitability of a topic or any other concerns are welcome, and
should be addressed to Theme Issue Guest Editor Michael M. Chemers via email at
chemers@andrew.cmu.edu or at 412-268-9777.
All submissions should be of interest to the broad range of DSQ's multidisciplinary
scholarly readership. All submission should be written in standard U.S. English following
5th edition APA publication format. Deadline for submissions is MARCH 1, 2005.
Please send your submission by email to chemers@andrew.cmu.edu, or via hard copy
(with disk) to Michael M. Chemers, Theme Issue Editor, Disability Studies Quarterly,
217 Purnell Center, Carnegie Mellon University, Pittsburgh, PA 15213.
Ever Widening Circle showcases professional artists
with disabilities in San Francisco, September 29
Two-time Grammy award-winning jazz singer and pianist Diane Schuur will headline the
6 th annual Ever Widening Circle, an evening of entertainment celebrating art and
disability, at the Yerba Buena Center for the Arts Theater in San Francisco, California on
September 29, 2004. From music to poetry to dance to comedy to performance art, this
year's Ever Widening Circle program, will also feature teen slam poet Emiliano BorgoisChacon, comedian Fred Burns, humorist/performance artist C.J. Jones and integrative
dance troupe Light Motion. The disability culture event serves as an annual benefit for
the World Institute on Disability and the Corporation for Disabilities and
Telecommunication.
Ever Widening Circle showcases top-notch professional artists representing diverse
disabilities, performance arts and ethnicities and has been steadily attracting a growing
audience from both the disabled and nondisabled communities in the San Francisco Bay
Area. Past performances have included the highly acclaimed gospel group, the Blind
Boys of Alabama, and Geri Jewell of TV sitcom "Facts of Life" fame. The event also
provides performers the opportunity to gain visibility, to educate the public about the
contributions of disabled performers to the entertainment industry, to become role models
for youth with and without disabilities, and to reduce some popular misconceptions about
disabled people.
Ever Widening Circle is a model for presenting entertainment that is accessible to all
audiences and always provides sign language interpretation and ample seating for people
who use wheelchairs. Assistive listening devices, audio description and programs in
Braille are also available upon request. For more information about Ever Widening
Circle, please visit http://www.wid.org/performance.
Women
Factors in Violence Against Women
By Silvia Quan (silviaq@intelnet.net.gt)
Yakin Ertürk, Special Rapporteur of the United Nations on the Situation of Violence
Against Women, visited Guatemala from February 8 to 14. She was able to meet with the
organizations working against violence affecting women, and government and
nongovernmental human rights organizations, together with other government authorities.
The objective of these meetings was to present to the Special Rapporteur the serious
situation of violence against the female population in our country and to elaborate
recommendations for the Guatemalan State.
I was able to participate in the meetings of the National Movement for Human Rights
(Movimiento Nacional por los Derechos Humanos), accompanied by two other women
with disabilities. Our objective was to share with the representatives present in the
audience about the importance of including the needs and the opinions of women with
disabilities as with in the scope or the work being conducted by the United Nations
Special Rapporteur.
My participation, together with the other two women with disability was among those of
about 15 sectors of our society expressing their experience with violence from different
perspectives: women from autochthonous groups, women victims of abuse and sexual
harassment, children of the streets, women in art, assembly lines, and other situations
where they become particularly vulnerable to discrimination and exclusion.
The other topic of great concern is the invisibility of disability as a human characteristic:
this places the victims in a more vulnerable position.
Violence against women with disabilities is still erroneously considered a private matter
in most cases. This situation worsens with the often increased physical vulnerability,
coupled with less opportunity to communicate with other persons, and intensified by the
great dangers that arise when people do not pay attention to you or when they do not
believe you. This is particularly true with women with cognitive disabilities. In general,
girls and women with disabilities do not participate much in regular social activities; they
are devalued. That is why it is no surprise that violence against girls and women with
disabilities is not addressed and the victims remain invisible, perpetuating the belief that
this situation does not exist in our society. This situation describes a double negative
effect: so long as there is violence against us, women with disabilities, there will be
greater difficulties against the life of other persons with disabilities.
Legal barriers
As a whole, the Guatemalan State, with the weakness of its institutions and its
paternalistic structure, becomes an important limitation when trying to address violence
against women with disabilities as a violation of human rights. If such violations fail to
be recognized, it is very hard to exercise legal protections for the victims or to establish
legal procedures against suspects or perpetrators. We need to combat both, violence and
impunity. That is the only path to justice.
Women with disabilities are not fully recognized as being persons having rights,
consequently, they do not have an equal status under the law. There are legal barriers,
like the one found in the Civil Code, Article 13, declaring that blind and congenitally
deaf personas are legally incapable.
Now to such legal restriction, if we add factors such as we are dealing with a woman, a
minor, and someone having a mental disability, these aspects together make this a serious
situation. We would be considering a "person", treated as a useless, not "productive"
object by the society. Then the situation becomes that of a person forced into invisibility,
deprived of credibility and value.
Disability as a risk factor
The women's movement has identified diverse forms of violence: physical,
psychological, sexual, economic pressure and verbal expressions. Yet, besides these
forms of violence, women with disabilities also confront isolation, abandonment, often
manifested in forced institutionalization and its devastating consequences
Prejudice and stereotypes regarding women with disabilities reinforce the ideas that they
do not have feelings, that they are people who cannot completely understand the
situations they going through or are experiencing from their surroundings, that they are
the objects of medical assistance or that they can be used freely by others. These
conceptions have greatly contributed to disfranchising us as persons: That is why, and not
infrequently, we are abused and even raped, malignantly and with premeditation... while
impunity seems to be the norm.
So the conditions of being a women and having a disability contribute to vulnerability
and multiply the number of assaults and the magnitude of the violence inflicted upon us,
particularly those living in institutions or those with little opportunities to get away from
their homes. Sadly, members of thestaff of many institutions and even persons with close
family ties have been accused and proven responsible of repeated acts of violence against
women, and also men, with disabilities.
And the list of violations continues because society in general will always try to annul the
sexuality of women with disabilities, not just limiting opportunities for developing
relationships, but also by forcing sterilization, physically abusing these women, imposing
prohibitions so they cannot form their own families, and even trying to take their children
away from them. We have to denounce and correct the fact that the majority of women
with disabilities are not allowed to live independent lives or make their own choices.
They are denied personal autonomy and the right to decide about their own destiny.
The women's movement and independent life
The women's movement has focused its efforts at validating the rights to a life with
dignity, free from violence, with autonomy, respect for diversity, the full enjoyment of
sexuality, freedom from prejudice. Women demand justice and equal participation in
society. Such aspirations and vindications are the same as those demanded by women
with disabilities. These fair demands for action coincide with the position defended by
the women's movement, and also call for the independent living philosophy.
Therefore, the needs and demands of women with disabilities must be part of the
vindications of the feminist movement. The feminist movement must promote the
participation of women with disabilities. We call on all women because, in seeking
equality to counteract a male dominated world, we have to build up a world of fair and
diverse human relationships.
Women with disabilities unite in rejecting the violence which isolates, exploits, excludes
and forces us into invisibility. We are women and have the right to live free and with
dignity.
Book Review: Welner's Guide to the Care of Women
with Disabilities: A Comprehensive Guide to Care
Welner's Guide to the Care of Women with Disabilities: A Comprehensive Guide to Care.
Sandra L. Welner, M.D. and Florence Haseltine, M.D., Ph.D. (Eds.)
2003: Lippincott Williams & Wilkins Publishers, 396 pages, $59
Review by Corbett Joan O'Toole (Corbett@disabledwomen.net)
READ THE WELNER GUIDE:
• it is the most amazing, single resource on health for women with disabilities
• you and your health care providers will learn important information
• you can use it to "double-check" your health provider's recommendations
• even though it was written for a U.S. audience, the health care information is
important and useable around the world
Let me begin by saying: you NEED this book. Yes, I know that $59 USD is a lot of
money. And I know that you didn't wake up this morning telling yourself that you HAVE
to buy a medical textbook today.
But trust me when I tell you that this book has information never collected before.
Information that you never even knew existed. Information that you need to assist women
with disabilities to become healthy and stay healthy.
A few years ago, the Director of the U.S. Office on Women's Health, added a section on
disabled women to their health website. The thirst for information about health care
issues for women with disabilities is so great that:
"The Women with Disabilities section of the National Women's Health Information
Center ( www.4woman.gov ) receives more than 3,000 visitors a month, consistently
placing it among the top-ten pages (out of 3,500 [pages]) on the site." (pg. 3)
The Welner Guide was designed by Dr. Sandra Welner to be a comprehensive resource
on health care issues for women with disabilities. Unfortunately Dr. Welner died at age
41 before the book was finished, so Dr. Florence Haseltine stepped in to guide it to
completion.
Dr. Welner was an amazing woman. She was a disabled woman (stroke), a medical
doctor, a researcher, an author and, most of all, a friendly medical guide for thousands of
women with disabilities in the U.S. Her book reflects all aspects of her work.
The Welner Guide is thoroughly researched and very specific. It covers a range of topics
including infertility, substance abuse, incontinence, parenting and sexuality. Although it
was written for medical professionals, I was able to understand most of the book even
though I don't have any medical training (except as a patient). The sections that were too
medical-jargon for me, I brought to my doctor so we could go over it together to find
solutions for my health care.
A few weaknesses
Although Welner's Guide has many strengths, it does have a few weaknesses. It was
written by and for the U.S. audience. Some of the beginning chapters are on very specific
aspects of U.S. law (like employment and the Americans with Disabilities Act). Feel free
to skip these chapters if you don't live in the U.S. Also the book sometimes feels too
medical - like we, women with disabilities, are being discussed only as patients and not
people. Finally all of the medications and procedure names are the ones used in the U.S.
so you may need to translate these to their more generic names to match what is available
in your area.
Scope of the book
Some chapters focus almost exclusively on women with physical disabilities while others
explore a wide range of women's disabilities. If you are looking for excellent information
for women with physical disabilities or chronic conditions, this book is an amazing
resource. For women with sensory disabilities, this book maybe less useful. In part this is
due to the tendency of medicine to look at everything through a very narrow lens (i.e. one
medical problem at a time). So there is very little medical information that matches the
experiences of disabled women's bodies.
Welner's Guide is an amazing resource on all women's health. In most chapters, the
authors describe the "typical" procedures and treatment, and then discuss how the
"typical" ways might impact women with different disabilities. So even if you don't have
the disabilities mentioned, you will learn an amazing amount from the basic information
on women's health.
"'Providers are often not sure what to do with people with disabilities,' Welner told a
Washington Post interviewer last year. 'They're afraid to do the wrong thing so they do
nothing, which is also the wrong thing.'"
It's an ongoing problem that very few women with disabilities are involved in health care.
This means that disabled women are getting all their health care information from
nondisabled practitioners who may or may not know about the specific care of women
with disabilities. Carry this book with you and you can become an informed consumer on
your health care (and help a provider get educated too!).
I cannot do this informative book justice in one article so I've selected a range of topics to
highlight. They will give you a taste of the book.
IMPROVING HEALTH CARE FOR WOMEN WITH DISABILITIES
"[W]omen with disabilities experience all of the health concerns that nondisabled women
do in the areas of reproductive health, mental health, nutrition and weight management,
cancer screening, cardiac screening, and so on. These issues may interact with disability
issues in ways that are unique to each individual, but the disability does not take them
away. Viewing health care for women with disabilities in this context emphasizes
similarities between these individuals and other women without ignoring differences that
must be taken into account when delivering comprehensive services to women with
challenging medical conditions." (p. 95)
As Dr. Welner and Ms. Temple describe above, disabled women need a lot of different
types of health care. They need general as well as specialized health care. They need
health care practitioners who are open to designing an individualized health care program
since a disabled women will not easily fit into pre-defined health care strategies. As Dr.
Welner says, "there are no "roadmaps" to follow. Communication and involving the
disabled woman is the key."
In the U.S. there are 30 million women with disabilities (21% of the U.S. population). Of
these women, 65% (19.5 million) have "severe functional limitations" and 21% (6.3
million) use personal assistance. Yet, as the Welner Guide repeatedly documents, these
women do not receive regular or effective health care. As researchers from the Centers
for Disease Control and Prevention found:
"Research indicates that women with disabilities encounter many of the same problems
as women who are not disabled, yet they report overall poorer health. Many also face
substantial physical, economic, social and attitudinal barriers to accessing care and have
the extra responsibility of dealing with the health concerns related to their disability." (p.
373)
While there are many sources that document the problems facing disabled women in
health care, Welner's Guide is one of the only sources that presents information and
solutions to those problems. In the opening chapter, Wanda Jones, Director of the U.S.
Office on Women's Health, reminds medical professionals:
"Whether is it gynecologic exam, pap test, contraceptive or sexually transmitted disease
(STD) discussion, colon or breast cancer screening, or immunization, providers should
make NO assumptions about the woman's health needs based solely on the nature and
extent of her disability." (p. 1)
Welner's Guide adds to the limited information on diverse women with disabilities. Even
though the majority of health care information on women with disabilities was done on
European-American women with physical disabilities, particularly spinal cord injuries,
authors include little-known research on women with other disabilities and from other
racial and ethnic groups.
Disability has a disproportionate impact on women. Economics, racial barriers, age, and
even specific diseases create different pools of women with disabilities. In the U.S.
"indigenous women (21.8%) and African-American women (21.7%) have the highest
rates of disability among women with disabilities." (p. 271) Systemic Lupus
Erythematosus (often called 'lupus' or 'SLE') impacts women 12 times more than men (1
man for every 12 women with lupus). African-American women are diagnosed with SLE
3 to 4 times more frequently than European-American women and have increased
disability and death rates from it.
SPECIFIC HEALTH CARE SUGGESTIONS FOR MEDICAL PROFESSIONALS
Welner's Guide offers many specific suggestions for both health care workers and women
with disabilities. Dr. Welner's multiple points-of-view as disabled woman and doctor
infuse the book with details that are impossible to find in literature written by people who
are not connected to the disability community. For example, she urges practitioners to
avoid using latex (common in examination gloves) when seeing patients with spina bifida
as many people with spina bifida are allergic to latex.
Her expertise in gynecological care provides valuable information for positioning patients
and performing internal examinations. For example, she advises that t o open a woman's
spastic legs for an examination adjust her legs with slow, gentle movements because
moving quickly can trigger increased rigidity. Also make sure that whatever her naked
skin touches is warm and not cold. She suggests putting a towel or blanket over the metal
parts of a table and put an oven-mitt over the metal foot holders.
Before a pelvic exam, she recommends having women with neurogenic bladders and/or
bowel evacuate (i.e. empty their bowel and bladder) to avoid embarrassing accidents and
time-consuming clean-up.
She even has advice for managing patient loads in an office. In the U.S. it is common for
doctor's offices to refuse to see a patient who is more than 15 minutes late for their
appointment (even though it is common for patients to wait even longer than that for a
doctor to see them).
"Whenever possible, it is helpful to be more lenient with cancellation and late-arrival
policies to accommodate women with disabilities using public transportation because
they have no control over broken elevators, late buses, and broken lifts."
Welner's Guide also suggests that medical staff plan to provide assistance to patients who
have difficulty filling in forms and offer them a confidential way to get help. It also
suggests that doctors should assume that women with disabilities have not had access to
health education materials and provide them.
Dr. Margaret Turk advises physicians to expand their definition of their job. Working
with disabled patients, counsels Dr. Turk, means expanding their medical knowledge
base, learning the rules of health insurance companies (which in the U.S. tightly define
what people with disabilities receive), create accessible environments and know the
accessibility of the physicians they refer to, and create partnerships with patients to create
workable plans for obtaining and maintaining optimal health.
The charts in this book are a goldmine. You can find out how birth control methods
interact with different disabilities. Or evaluate the impact of pregnancy or medications on
women with disabling rheumatologic conditions (like arthritis or lupus). You can see
what percentage of disabled women are abusing drugs. Or see a list of foods most likely
to trigger bowel incontinence.
HEALTHY BODY, HEALTHY MIND
There is a strong emphasis in Welner's Guide on the importance of having both a healthy
body and health mind. Most research on disabled women's health focuses on specific
medical problems to the exclusion of other, often concomitant, problems. Dr. Welner and
Ms. Temple reminds us that the:
"Ultimate goal of health maintenance programs for women who are disabled is to
maximize independence and well-being while minimizing deterioration and intercurrent
illnesses." (p.95)
It is important to note that they neither state nor imply that the goal is to "heal" disabled
women nor to remove their disabilities. Instead, they tell us that health care needs to
focus on keeping women as healthy and independent as possible while limiting any
additional health problems. To accomplish this, Welner's Guide advocates for an
integrated, whole-body approach to health care for women with disabilities. They see
nutrition and physical activity as important as bladder care and pain management.
Numerous authors document the intimate interrelationship between physical and mental
states. Inability to be independent due to health problems creates depression and lack of
physical activity which, in turn, creates pain and increasing barriers to independence.
Disabled women have an increased risk for heart disease and osteoporosis because they
do not have enough weight bearing activities or aerobic exercise, which lead to, and are
reinforced by a sedentary lifestyle and obesity. Prior to reading Welner's Guide, I wasn't
too concerned about my heart's health until I read this statistic:
"Cardiovascular disease is the leading cause of mortality for women, claiming more than
500,000 lives annually, a twofold greater mortality than that attributed to all cancers." (p.
240)
Now, I am interested. Research shows that lack of exercise increases risk for heart
disease. Pain also limits women's ability to exercise and also causes depression, anger
and anxiety. Over time, most women with disabilities who do not exercise become
"deconditioned", or "couch potatoes". It quickly becomes a cycle: lack of exercise
increases fatigue and pain which increases lack of exercise. There are many reasons that
people with disabilities do not exercise more, including "pain, fatigue, experience of
stigma, uncertainty about disability progression, discrimination, prejudice, abuse and
oppression." But without regular movement most women will experience increased
disability and limitations. As Marya Santiago states:
"Only regular participation in moderate physical activity or exercise programs has the
potential to break the "vicious cycle" caused and promoted by high levels of fatigue and
physical deconditioning." (p.223)
IMPORTANT, AND OFTEN OVERLOOKED HEALTH CARE ISSUES
One of the best gifts of Welner's Guide is the amazing detail. It offers extensive thinking
and research (when available) on a wide variety of health conditions for women with
disabilities. Here is a brief taste of a few of them.
SEXUALITY
"A sense of humor can be the most valuable attribute in making flexible adjustments to
physical limitations [during sex]." P.351
The best part of the sexuality parts of this book is that the writers expect that women with
disabilities want to have a sex life. They do not expect any woman to look like a model or
move with the flexibility of a gymnast. So they provide lots of concrete information
about positions, exploration and contraception.
After a trauma, many disabled women go through a process of re-acquiring their
sexuality. It might begin with a shutting down of sexuality. Slowly a woman may begin
experimenting - perhaps during bathing. She will need to find her own way to pleasure
again. It will certainly not be the same as it was before. Many women who are not
disabled go through this also when they age. Their body is not reacting the same as when
they were younger. With creativity, this can be a wonderful time for exploring and
creating new pleasures for yourself. And, if she desires, she can share this new body with
a caring partner.
Luckily, page 351 of Welner's Guide provides drawings of "suggested coital positions for
people with a disability or chronic illness". These positions give readers lots of ideas for
comfortable positions for sexual intimacy. Even though these positions demonstrate
coital (i.e. male-to-female penetration) positions, they also give ideas for how to be
positioned for non-penetration sexual intimacy. Although the authors use the term
"partner," most of the information is written presuming heterosexual partnering. For
women who prefer sex with women, there is still lots of valuable information throughout
the sexuality sections.
Welner's Guide argues that for disabled women to feel comfortable about being sexual,
they must think about their needs and put it in place before having sex. This "planned
spontaneity" may include slippery sheets, medication management, incontinence
management, or having extra cushions. They suggest that even if a woman doesn't return
home with a partner, she can still "have a fun solo experience."
Dr. Beverly Whipple and Dr. Sandra Welner remind us that men and women's
physiological sexual responses are very different. A woman's sexual response is circular
and a man's is linear. A man's typical pattern is desire, arousal (erection), and orgasm. A
woman's typical pattern is seduction, sensation, surrender, and reflection. It has even
been documented that women can have orgasms from a fantasy - without being touched
at all or touching themselves.
A significant health concern for many disabled women is contraception. Welner's Guide
is full of facts, charts and opinions on contraceptive choices for women with disabilities and even some creative disagreements. While Drs. Elizabeth Drey and Philip Darney
strongly recommend a specific IUD (levonorgestrel intrauterine device or LNG IUD), Dr.
Sandra Welner doesn't even mention it as useful in her chapter. I like to think of this as
getting a second opinion for free.
The Drey/Darney chapter offers many useful charts on contraceptive choices for women
with various disabilities and even offer useful websites for further contraceptive
information.
In discussing genital infections, Dr. Sandra Welner points out that the most commonly
prescribed medications for yeast infections can have significant interactions with the
drugs that are often prescribed for women with disabilities including: antihistamines,
warfarin, cyclosporin, digoxin, lovastatin, methylprednisolone, phyenytoin, and
nortiptyline.
DEAF WOMEN
Dr. Welner was very concerned that Welner's Guide include as many women with
different disabilities as possible. She actively recruited deaf women to write a chapter on
health care for deaf women. The authors,
Dr. Teresa San Agustin, MD, Joy Atchison, M. Ed., and Bonnie Gracer, MSW are
respectively a doctor, a professor and a social worker, all of whom are deaf. Their chapter
is entitled Health Care and Deafness: Deaf Professionals Speak Out. It is written in a
wonderfully accessible style. They educate both deaf and disabled women as well as
health care professionals through specific real-life stories of deaf women in health care.
They are careful to provide a balance of positive and negative experiences. They also
provide important commentary after each example of what did and did not work. The
stories cover everything from using interpreters in an Emergency Room to keeping on
hearing aids until surgical sedation was completed to appropriate care during psychiatric
crises. They end the chapter with great resources (based in the U.S. but most having
websites).
INCONTINENCE
When I realized this book had two chapters on incontinence, I was less than thrilled. It's
not an issue that I deal with personally and I thought the chapters would be dense and
tedious. I was wrong. Much to my surprise, the chapter on bowel incontinence was
fascinating.
They grabbed my attention right at the beginning by stating that: "Bowel and/or bladder
incontinence is often single reason for institutionalization of women with disabilities."
Suddenly the topic of incontinence became important to me.
The authors, Dr. Kirsten Wilkins and Dr. Kirk Ludwig, present the information in an
easy-to-understand format. They, and the authors on bladder incontinence, offer specific
medical and behavioral suggestions including dietary interactions, identifying
medications that increase incontinence and if needed, surgical techniques. They note that
alcohol, and liquids with caffeine such as coffee, tea and colas act as diuretics and cause
the body to actually lose more water.
WOMEN WITH COGNITIVE IMPAIRMENTS
Women with cognitive impairments are rarely included in texts about women with
disabilities. Yet Dr. Welner sought out specific information on gynecological care for
women with cognitive disabilities. The chapter by Dr. Elisabeth Quint gives good,
specific descriptions of what constitutes compassionate and effective care.
Unlike nearly everything else written about women with cognitive impairments. Dr.
Quint argues for the need for physicians to assist the woman in keeping her physical
integrity. She specifically challenges the needs of families to advocate medications or
sterilizations to control a woman's menstruation. Instead, she argues, physicians should
be assisting families to find solutions that maintain a woman's physical integrity and
dignity.
In one small example of the value of this chapter, she recommends a long but narrow
speculum (like the Huffman-Graves) for examining adult women, stating that the
pediatric speculum is narrow but not long enough to examine an adult woman.
PROBLEMS WITH MEDICATION INTERACTIONS
Throughout Welner's Guide authors identify how medications commonly prescribed for
disability conditions interact negatively with medicines commonly prescribed for
women's health problems (like yeast infections, etc).
The chapter on the interactions between commonly used psychiatric medications and
commonly prescribed medications for disability conditions is outstanding in its
thoroughness. Although most publications on disability and health routinely ignore the
issues of mental health, there are numerous documented studies that show that people
with disabilities have a high incidence of mental health challenges often due to living
under the stress of being a marginalized and underserved population.
Before you take any medications you should read this chapter. It documents the many
negative interactions between commonly prescribed psychiatric medications and
commonly prescribed disability medications which could "1) exacerbate a patient's
medical symptoms; 2) mimic or worsen the side effects of other drugs, and 3) interact
with other (disability) meds with untoward consequences." (p.301)
SEXUALLY TRANSMITTED DISEASES
Unlike societal stereotypes, disabled women do have sex and sometimes do get sexually
transmitted diseases. Dr. Welner wrote an entire chapter on genital infections and
sexually transmitted diseases (STDs).
Dr. Welner's writing offers the specific "insider" advice that comes from treating
hundreds of women with disabilities. For example, in discussing the treatment of herpes
simplex complex, she notes that many women and their physicians may misdiagnose a
herpes ulcer for a decubitus ulcer (pressure sore), preventing the woman from getting
appropriate treatment. She suggests that since healing the herpes ulcer in a genital area
would require a wheelchair-riding woman to lay down for an extended period of time, a
more efficient strategy would be to use heat lamps and other approaches to accelerate the
ulcer's healing.
DRUG AND ALCOHOL ABUSE
Professionals in the field of substance abuse are concerned that people with disabilities
are not identified as potential abusers even though studies show that they have
significantly higher numbers than nondisabled people. In the United States problems
related to alcohol and other drugs are considered to be the number one public health
problem. Disabled women may abuse illegal (street) drugs, alcohol, prescription
medications or a combination of these.
The authors suggest that all new rehabilitation patients are checked for substance abuse
and hepatitis. They are concerned that family, friends or professionals of women with
disabilities do not see them as having a substance abuse problem. Too often, problems
related to substance abuse are incorrectly attributed to disability, inaccessibility or
medications. So even though a woman is acting outrageously, it will be attributed to a
"natural frustration" at not being able to participate in an event instead of the drugs that
she took.
ABUSE
Numerous studies have documented that people with disabilities are at a higher risk for
physical, sexual and emotional abuse. The statistics most frequently used in Welner's
Guide are from a CROWD study that found that the overall level of abuse was the same
between disabled and nondisabled women (62% for all kinds of abuse and 30% for sexual
abuse, for both groups). One important notation on this research is that it was conducted
on white (i.e. dominant culture), college-educated women - a group that is not
representative of disabled women in the U.S. Other researchers have found significant
differences between the abuse rates for disabled and nondisabled women.
But even in the CROWD study, disabled women were victims of violence by more
perpetrators, for a much longer duration, and abused by intimate partners, family
members, personal care attendants, and health care providers. Comparing disabled
women to nondisabled women using only types of abuse that nondisabled women
experience masks the types of abuse experienced only by women with disabilities such
as, removal of mobility devices, refusal to administer medications, refusal to provide
basic access, etc.
The authors note that when screening for abuse, it is important for health care providers
to realize that the disabled women may not feel safe disclosing abuse with a family
member or attendant in the room, because the majority of women with disabilities are
abused by people in their everyday life. One positive change is that many U.S.
professional health care organizations, particularly those for Obstetricians and
Gynecologists, encourage their members to screen for domestic violence.
DISABLED MOTHERS
The chapter on "Baby Care Preparation: Pregnancy and Postpartum" by Judith Rogers
and other Occupational Therapists from Through the Looking Glass in Berkeley,
California, USA is wonderfully informative. As they state the problem:
"some women are pressured to terminate their pregnancies or relinquish their children by
uninformed individuals unable to imagine how women with disabilities can care for their
babies." (p. 169)
How refreshing to read health care professionals identifying the barriers to raising
children as based in the lack of imagination of health care and social worker professionals
and not in a disabled women's lack of parenting skills.
Their chapter continues by offering multiple strategies for professionals, disabled
mothers, their partners and families. They begin by discussing what has come to be the
most radical theory of their work: "Visual History". As they describe it, "visual history is
the accumulation of images of the various ways in which mothers with physical
disabilities successfully perform baby care activities." Nondisabled people provide a
visual history of how they perform babycare activities every day. All women can describe
how a nondisabled woman holds a baby to feed, or to bathe.
Yet almost no woman has seen a woman with a disability performing the same tasks. So
when a disabled woman wants to have a baby, she is blocked by her own, and others, lack
of any images of how a woman with a similar movement pattern would accomplish basic
baby care activities such as feeding, changing, carrying and bathing.
Through the Looking Glass has created numerous ways for people to get strategies and
ideas: they videotape parents with disabilities performing baby care activities; they have
written numerous professional articles; they host international conferences on parenting
with a disability; and they publish Idea Books for adaptive parenting equipment.
SUMMARY
As I've said often in this review, you need to own this book. It has information you won't
find anywhere else. It's a great way to be informed about your own health care and to
help women with disabilities become informed about theirs. This book is so packed with
information that it took me 15 hours to read through the 382 pages. Luckily for you, it
has a great index so you can find specific information quickly.
Tribute to Dr. Welner
The problem with great women is that when they are gone, the world has a great, big hole
in it. Dr. Sandra Welner, who died at age 41, was a great woman, a great physician and a
great teacher. She wasn't planning on being any of those things when she went to medical
school. She was just going to be a doctor like her father and brothers. But she had a
stroke before she finished her medical training.
When Dr. Welner saw medicine from the patient side of the exam table, that changed
everything. She watched as her status as a competent person was constantly questioned
after she became disabled. She became determined to change medical care for women
with disabilities for the better.
One of the amazing things about Dr. Welner was her commitment to changing all the
aspects of medicine. She was a primary care physician who specialized in gynecological
care for women with disabilities. [Primary Care Women's Health Physician in her own
medical offices]
She was a professor of medicine who trained new medical students. [Assistant Professor
of Obstetrics and Gynecology at both Georgetown University Medical Center and
University of Maryland School of Medicine]
She wrote numerous articles in professional journals to educate doctors and nurses. [see
Resources] And just because the world needed it, she invented an examination table that
was accessible to both disabled patients and disabled health care providers. [Welner's
Universally Accessible Examination Table]
She saw herself as an important bridge between medical patients and health care
providers. She worked on just as many community-based disability health projects as she
did on professional medical projects. She was the kind of doctor that you could call up
(even if she didn't know you) and ask her a question.
She helped start primary care programs for women with disabilities at Washington
Hospital Center and the National Rehabilitation Hospital.
She was a soprano in the Keshet Chorale of the Washington, D.C., Jewish Community
Chorus.
Dr. Welner was also a consultant to state public health departments, the Centers for
Disease Control and Prevention and the Department of Health and Human Services. As
Georgetown University wrote in her obituary:
"Welner, above all, wanted patients to feel more independent in seeking medical care.
She invented an adjustable pelvic-examination table that could be lowered to 20 inches
above the floor, easing a patient's access to and from a wheelchair. According to The
Washington Post, she called the device, now used nationwide, the Universally Accessible
Examination Table." http://www.thehoya.com/news/103001/news3.cfm
She knew that one person could only do so much. So she decided to gather the best minds
in the U.S. on health care for women and people with disabilities and put it all in one
book. Her book, " Welner's Guide to the Care of Women with Disabilities: A
Comprehensive Guide to Care" is a powerful tool for women with disabilities around the
world.
Dr. Welner died in an accident in 2001. When I first heard the news, I was bereft. In the
U.S. there is no one else who can do even half of what Dr. Welner was doing. She was a
once-in-a-generation gift to us. Thanks to her ongoing dedication to writing down critical
health care information on women with disabilities, she left a library of articles and a
significant book behind.
Take her book and change the world of health care for the women with disabilities in
your part of the world. When people ask how you learned so much, tell them that you are
now part of Dr. Sandra Welner's legacy.
Contents of the Welner Guide:
• Health care challenges for clinicians and clinical researchers
• Employment issues for women with disabilities: opportunities, programs and
outreach efforts
• Americans with Disabilities Act and the women's health provider: what the women's
health provider needs to know about the ADA, case law ramification of
noncompliance, and the like
• The blind or visually impaired patient seeking health care
• Health care and deafness: deaf professionals speak out
• Disabling rheumatological conditions affecting women
• Management of urinary incontinence in women with disabling conditions
• Management of fecal incontinence
• General health concerns and the physical examination
• Contraceptive choices for women with disabilities
• Genital infections - diagnostic and therapeutic challenges
• Chronic neurological diseases and disabling conditions in pregnancy
• Obstetric anesthesia
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Baby care preparation: pregnancy and postpartum
Infertility diagnosis and treatment for the disabled woman
Osteoporosis: unique aspects of pathophysiology, evaluation and treatment
Exercise and physical activity options
Nutritional considerations
New perspectives on hormonal management of the menopausal woman with
disabilities or chronic disease states
Gynecological health care for developmentally disabled women
Secondary conditions: physical deconditioning, fatigue and spasticity
Disability and depression
Special considerations for using psychiatric medications
Substance abuse and women with disabilities
Violence against women with disabilities: the role of physicians in filling the
treatment gap
Sexuality issues
Pain: gender differences, psychosocial factors and medical management
Additional Resources on Health & Women with Disabilities
Aging with a Developmental Disability by Allison Brown and Leone Murphy
http://www.thearc.org/faqs/whealth.html
Aging/DD Listserve: WOMHLTHAGING-DD@LISTSERV.UIC.EDU (Women, health
and aging with a developmental disability)
To join: http://listserv.uic.edu/htbin/wa
American Association on Health and Disability
http://www.aahd.us/aahd_cdc.htm
Breast Health Access for Women with Disabilities
www.bhawd.org
Breast Self-Exams: Modified for Women with Physical and Sensory Disabilities
http://www.bhawd.org/sitefiles/bse/bse_broc.html
Informative guidebook with pictures and very detailed instructions.
Center for Research on Women with Disabilities
http://www.bcm.tmc.edu/crowd/index.htm
Multiple publications on health, abuse, wellness and community and women with
disabilities.
DisAbled Women's Network Ontario, Canada
http://dawn.thot.net/
Thousands of webpages of resources on women with disabilities.
June Isaacson Kailes' resource page on Health, Wellness and Women with Disabilities:
http://www.jik.com/hwawd.html#Women%27s
Magee Comprehensive Healthcare Center for Women with Physical Disabilities at
Magee-Womens Hospital of UPMC Health System
http://www.magee.edu/ClinicalServices/wwpd/wwpd1.html
North Carolina Office on Health and Disability
http://www.fpg.unc.edu/~ncodh/pubs.htm
Many publications are free online (in pdf format or html) from their website including:
Removing Barriers to Health Care: A Guide for Health Professionals; Partners in Health
Care:
Women with Disabilities & Their Health Care Providers
IF YOU CANNOT WAIT TO GET THE BOOK, THEN READ THIS EARLIER (AND
SHORTER) WORK BY Dr. Welner: A Provider's Guide for the Care of Women with
Physical Disabilities & Chronic Medical Conditions
http://www.fpg.unc.edu/~ncodh/Providerhtml.html
Parents with Disabilities Online http://www.disabledparents.net/index.html
Great Resources including medical information, adaptive equipment for carrying a baby,
as well as networking resources.
Table Manners and Beyond
http://www.bhawd.org/sitefiles/TblMrs/cover.html
"The Gynecological Exam for Women with Developmental Disabilities and Other
Functional Limitations", by Katherine Simpson (Ed) and Kathleen Lankasky (Producer)
State Projects on Disability and Health
http://www.aahd.us/sindex.htm#slinks
15 states are partnered with the national government to identify barriers to health care for
people with disabilities and to make improvements. See this webpage to find research and
resources from these projects.
Sexual Health website
www.sexualhealth.com
Susan's Sex Support Site: Resources on Women, Disability and Sexuality
http://sexsupport.org/WomensResources.html
Welner, Sandra; Simon, James & Welner, Barbara
"Maximizing Health in Menopausal Women with Disabilities," Sandra Welner, MD, was
published in the May-June 2002 edition of Menopause , the Journal of the North
American Menopause Society
http://www.menopause.org/abstract/93208.html
Women with Disabilities: Access to Health Care website
http://www.4women.gov/wwd/wwd.cfm?page=25
Women with Disabilities Australia
http://www.wwda.org.au/contents.htm
Fabulous links and information for women around the world
Loud, Proud & Prosperous: New Video Features Microcredit Projects of Women with Disabilities in Southern
Africa
"Loud, Proud and Prosperous®" is a documentary about women with disabilities in
Zambia and Zimbabwe who are participating in cutting-edge micro-credit programs.
Through interviews with disabled businesswomen at their places of enterprise, the video
promotes new, more accurate images of women with disabilities in developing countries
as micro-entrepreneurs supporting themselves and their families and as agents of
economic development.
Produced by Mobility International USA and Dana E. Vion, The Sky's the Limit
Productions, the 16-minute video is aimed at micro-finance organizations, international
development agencies, women's and disability organizations, and international studies
and disability studies programs. For international development organizations, the video
provides insights and practical recommendations to more effectively tap the potential of
women with disabilities as clients, businesswomen and economic contributors. For
people with disabilities, the video offers international perspectives on the economic
challenges and strategies of women with disabilities especially in southern countries. The
video is open captioned. For more information about Loud, Proud and Prosperous®,
please visit http://www.miusa.org/pr/videopr.htm.
New Book: Women, Disability and Identity
Edited By: Asha Hans: Utkal University, Bhubaneshwar & Annie Patri: Shanta Memorial
Rehabilitation Centre, Bhubaneshwar
Pages: 288 Cloth
(0761997008)
January 2003, Published by Sage Publications ($59.95/£29.99)
information: www.sagepub.com.aspx?pid=9241
This volume consists of critical and theoretical articles about women with disabilities in
both developed and developing countries. Disabled women and their place in these
societies has been a subject that has been neglected in the past, therefore these essays will
fill a gap in the evolving literature on disability studies.
The nature of the problems faced by disabled women are such that they need to be
addressed by both the feminist and disability movements. But the fact is that they remain
invisible within the women's movement at large. This volume, therefore, attempts to
provide a space to women with disabilities in the global feminist literature and
movement.
PART ONE: IMAGES AND VALUES
Michelle La Fontaine Perfect? An Analysis of the Global Human Genetics Fix
Madeleine A Cahill and Martin F Norden Hollywood's Portrayals of Disabled Women
Meenu Bhambani Societal Responses to Women with Disabilities
Sandhya Limaye Sexuality and Women with Sensory Disabilities
PART TWO: MIRRORING A REALITY
Renate Reymann Lifelines: Learning to Live with Partial Sight
Stephanie K Takemoto Young Women with Disabilities in Post-Secondary Education: A
Personal Story
Vanda Dignani Women, Affectivity, Handicaps
Lina Pane-Hawkins Women with Disabilities from a Non-English-Speaking Background
PART THREE: LOCATING WOMEN'S AGENCIES IN DIFFERING SPHERES
Ann Darnborough Disabled Women in Society: A Personal Overview
Cindy Lewis Loud, Proud and Passionate: Including Women with Disabilities in
International Development Programmes
Elizabeth Depoy Understanding the Experiences of and Advocating for the Service and
Resource Needs of Abused, Disabled Women
Salma Maqbool Situation of Disabled Women in South Asia
PART FOUR: FACILITATING STRATEGIES AND ENTITLEMENTS
Jacqueline Huggins The Status of Women with Disabilities in Trinidad and Tobago
José Azoh Barry Challenges to Empowerment and Independent Living: A Case Study of
Young Adult Mexican Women with Disabilities
Shoba Raja, Emily Boyce and William Boyce Standing on Our Own Feet
Catherine A Marshall AMUDO and the Vecinos Project: Striving Together to Meet the
Needs of Indigenous Women with Disabilities in Oaxaco, Mexico
Children & Youth
Ecuador: Only two of every 100 children with visual
disabilities in poor countries attend school, says World
Blind Union at Quito conference
By Luis Fernando Astorga Gatjens (lferag@racsa.co.cr), with information from Disnnet
and INCIdencias
Delegations from the 19 countries constituting the Latin American Union of the Blind
(Unión Latinoamericana de Ciegos), meet last April 19 through 23 in Quito, held their V
International Congress and VI General Assembly.
They had also organized a Technical Congress (April 19 to 21) on technology and access
to information for persons with visual disabilities. The General Assembly of the Union
was held on April 22 and 23 in order to present the reports of the Board of Directors and
the appointed commissions and also to elect the new official for the 2004-2008 period.
The Latin American Union of the Blind is a branch of the World Union of the Blind. The
World Union is presided by Kicki Nordström of Sweden, who participated in the
productive activities organized by the Latin American Union in Ecuador.
Persistent exclusion
Kicki told the delegates: "An estimated 98% of the children with visual disabilities,
particularly in the Third Word, lack access to school. Under these circumstances, only the
educated blind would have opportunities at the job market. " The 200 participants (150
from Ecuador and 50 from other countries) welcomed her words, including Gloria
Gutiérrez, a 43 year old Nicaraguan activist who is blind. Her attention was not directed
to the front where the Conference table was, but to the loud speakers from which she was
taping every word she was to take to the 150 members of her association in Matagalpa,
Nicaragua
Gloria said: "The Nicaraguan State does not assume its obligation of rehabilitating
persons who are blind. Our association provides its members with craft training so they
can contribute to the family income. We teach them how to make hammocks, baskets,
and we make artifacts to sell at fairs."
No jobs
The fact that 75% of persons with visual disabilities are unemployed, was part of the
alarming information shared at the International Conference of the Latin American Union
of the Blind. This serious situation was commented on by Luis Narváez, Director of the
National Federation of the Blind of Ecuador, the host organization of the event: "Persons
who are blind lack opportunities to find a job and even their families exclude them. We
are working to gain our space in society, we are not something that is bad. There are
many blind professionals in our country."
Luis Narváez is also in charge of the Department of Kioscos and Telephone Services
(Departamento de Kioscos y Servicio Telefónico). This Department, supported by
international cooperation, offers jobs to 360 blind workers in Ecuador.
The proposal of the National Institute of the Blind
The National Institute for the Blind (Instituto Nacional para Ciegos), proposed to the
delegations of the V Technical Congress, the creation of a network of technological
materials for blind persons, including the development of accessible software. This
network could become an important link and exchange opportunity, in Spanish, for Open
Source software developers, using the World Wide Web and the existing resources of
several universities, research centers and the organizations of blind people in Latin
America.
This proposal of the National Institute for the Blind emphasizes the concept of fostering
the access of blind persons to digital information, by developing country based software,
as a way of eliminating communication barriers. The Network will also contribute to
creating educational and job opportunities for persons with visual disabilities. There is
also the need for developing Open End Interfaces to foster the development of more
accessible software by the industry, without additional cost and using any technological
platform.
The Internet is the most efficient and economical tool for advancing this proposal. It
would allow immediate information exchange in and from anyplace in the world. This
type of accessibility oriented initiative will become an excellent form of interaction and
cooperation towards improving the communication possibilities of persons with visual
disabilities of Latin America.
At the end of the activities of the V Technical Congress and the VI General Assembly
there was an exhibit of technological products developed by the Technical Assistance and
Development Group of the National Institute, including materials in Braille and large
type.
Towards Greater Educational Access for Disabled
Russians: Presentation to the "Inclusive Education:
Problems and Perspectives" Conference
By Alexander Vershbow, U.S. Ambassador to the Russian Federation, June 24, 2004
I would like to thank everyone for coming here today to participate in this conference,
which seeks to promote greater awareness of the barriers disabled young people face in
obtaining equal access to education. This is a topic that has received far too little
attention, and I am pleased that my government, through USAID's support of the NGO
Perspektiva and its regional partners, is able to contribute to a greater awareness of the
issue. Former U.S. Vice President Hubert Humphrey once said that "the moral test of
government is how that government treats those who are in the dawn of life, the children;
those who are in the twilight of life, the elderly; and those who are in the shadows of life,
the sick, the needy and the handicapped." In my brief remarks today, I would like to offer
some thoughts as to how the institutions of government -- and in particular the legislative
process -- can be used to lift the shadow that Vice President Humphrey referred to and
guarantee that the educational needs of the disabled are met.
More than a decade ago, the United Nations High Commission on Human Rights
concluded that "In most countries, human rights violations against disabled people take
the form of unconscious discrimination, including creation and maintenance of manmade barriers preventing disabled people from enjoying full social, economic and
political participation in their countries. Most governments have a narrow understanding
of human rights vis-à-vis disabled people and believe they need only abstain from taking
measures which have a negative impact on them." Although many countries, including
Russia, have made significant progress in the past few decades, people with disabilities
still face numerous barriers that prevent them from realizing their potential and fully
participating in society.
Indeed, many experts believe the greatest obstacle preventing disabled Russian children
and young adults from fully integrating into society is discrimination in equal access to
education. The 2002 State Report on Children in the Russian Federation estimates the
total number of disabled children in Russia at more than 650,000. Yet only about 185,000
disabled children receive education in the system of general and special education and
only 20 of Russia's 89 administrative divisions have special, remedial educational
institutions for the disabled. Over 70 percent of disabled Russian children receive little or
no formal education, relegating them to a lifetime of dependence.
Disabled children and young adults face significant bureaucratic and social barriers to
education: children with developmental disabilities are often marked as "uneducable;" the
majority of teachers and administrators have little or no understanding of disability issues
or training to deal with them; there is very little accessible transportation and very few
accessible school buildings; and parents of non-disabled children object to having their
children study with disabled children. The few existing laws promoting the integration of
disabled people into Russian society are predominantly declaratory, lacking
implementation mechanisms. Disabled students and their families do not want to be shut
away from the rest of society or given a watered-down curriculum that leaves them
unprepared to compete for jobs; they want, deserve and need the opportunity to receive a
decent education and to work so that they can maintain themselves with dignity and
contribute to society.
The experience of my country may offer a useful example of how progress on social
issues such as this can be made through well-conceived legislation. Until the 1970s, the
United States faced a situation similar to that prevailing in the Russian Federation.
According to the U.S. Department of Education, in the 1970's, more than one million
children with disabilities were not receiving any public education, and another 3.5 million
did not receive appropriate programs within public schools. Many of these young
disabled Americans were placed in state institutions for the mentally retarded. The first
American federal law mandating equal access to education for disabled children, the
Individuals with Disabilities Education Act (IDEA), was signed into law in 1975. This
federal law guarantees disabled students equal access to free, public education in the least
restrictive environment appropriate to their individual needs. The statute requires school
districts to develop individualized educational programs tailored to the needs of each
disabled child. And the statute accords parents the right to appeal to a state educational
agency, and even to state or federal court, when they disagree with the school's
individualized program.
For almost 30 years, this law has played a major role in transforming American
communities. Through IDEA-mandated school programs, millions of students with
disabilities have received the education they need to become fully participating members
of society. Today, infants and toddlers with disabilities receive early intervention services
that help get them on the right developmental track from the beginning. Children with
disabilities go to preschools and schools in their communities with their brothers and
sisters. They have the opportunity to play sports and participate i n extracurricular clubs
and activities. And, when they finish school, they often are able to work, pay taxes and
contribute to society.
IDEA has fundamentally changed the role of government. Instead as serving as a
caretaker of dependent individuals, the government now guarantees their access to
education, empowering the disabled to participate fully in their community and to gain
the education and skills necessary to support themselves. As Russia faces such important
questions as how to improve educational access for the disabled, you should know that
you are not alone. Although the United States still has much work to do in this area, we
have been working on educational system improvements for three decades. We are more
than willing to share our experiences wherever possible.
In closing, Russian and American partnerships like those between the World Institute on
Disability and Perspektiva is a good example of how we can share our experiences and
mobilize resources to solve social problems. Let us continue to work together to build a
better educational future for all.
I thank you for your attention and most of all for your commitment to this vital - and
often overlooked -- issue.
Madagascar Launches Social Integration for Mentally
Disabled Children
By Fela Razafinjato (fela.csm@netclub.mg)
Everywhere in the world, it is difficult to be "different". The impairments of people with
disabilities makes them different from others, they carry the gaze of the other.
Nonetheless, their rights and their dignity must be recognized, as they must for everyone
who lives in this world.
Madagascar makes no exception to the rule which says that all differences must be
perceived as an attack on normality, and that everything which is not within the norm
must be rejected.
People with disabilities in Madagascar live separate from others, and each day is a
struggle to live through. Two major obstacles challenge them on a daily basis:
• Prejudice and discrimination: they are not quite overt, but the simple gesture, the
look, the indifference of others are expressive signs. It is not surprising that many
people with disabilities become frustrated, lack self-confidence and lose the desire to
be seen.
• Inaccessibility of many types: lack of financial and geographical access to services
and care related to their disability, lack of physical access to buildings and public
places, lack of access to information for deaf and blind people.
One cannot help noticing that among people with disabilities, the mentally disabled are
the most excluded because sometimes they scare others (they are often confused with
mental patients). They are an estimated 3% of the population of Madagascar, or 450,000
people averaging 12 to 16 years of age.
Since the year 2000, Handicap International has focused to a large extent on the
recognition of the rights of mentally handicapped children, and has put in place
sensitivity programs both for the parents of mentally handicapped children and for the
general public. These efforts have led to:
• An increase in the number of organizations that provide care to children with mental
impairments. Today, there are 17 special education centers (day centers) half of which
are in Tananarivo city.
• The opening of an integrated class in some private schools.
The integrated class is a class made up exclusively of mentally handicapped children, and
placed among the various classes of the school. The goal is to familiarize the nonhandicapped students with the world of disability and vice-versa, so that both parties may
understand each other, communicate with each other, and even help each other.
One hardly needs to point out that many people have voiced their hesitations and their
skepticism at the idea that mentally handicapped children should come out of the
shadows and live among other children. In addition, disability is perceived as a curse in
Malagasy society, especially in the rural areas. Dissuading people from their orthodox
practice seems no small task, but since the associations of parents are determined to
mobilize to advocate for the rights of their mentally handicapped children, things are
slowly evolving in the right direction.
Today, there are 8 private denominational schools with an integrated class: 2 in
Ambositra, 1 in Manakara, 1 in Monrondava, 2 in Antsirabe, 1 in Antsiranana and 1 in
Tananarivo city. Supposing that a class has 10 students on average, 80 children with a
mental handicap out of the 450,000 are now in contact with the ordinary school
environment, and they are happy to be making friends.
It is also encouraging that the financial backers have embraced the cause of people with
disabilities, and are supporting efforts to better include them in society.
One recent example is the collaboration between the association "La Source" and the
Japanese embassy. The latter granted a 323-million Malagasy Franc ($45,000) subsidy to
open a multi-purpose integration center. "La Source" then built an 8-room building
housing:
• preschool classes for non-handicapped children
• integrated classes for mentally handicapped children
• a computer workshop for youth
The inauguration of the center took place on March 19, 2004, and the association "La
Source" as well as the other associations in attendance called for the state, the political
decision-makers, the economic decision-makers, and members of civil society to work
together to implement article 6 of decree n?2001-162:
"Persons with disabilities shall fully enjoy their citizen's rights in their relations with
other members of society."
The present reality is certainly far from satisfying, but it is the first step that counts. Much
remains to be done with regard to the social inclusion of mentally handicapped persons,
and the associations are conscious of this fact. This is why they are coming together in a
federation called FEPAPHAM-Madagascar (Pan-African Federation of Mentally
Handicapped People), which is very active in advocating and sensitizing, because in our
numbers lies our strength.
International Conference Held on "Inclusive
Education: Perspectives for Development in Russia"
By Perspektiva (http://perspektiva-inva.ru/index-eng.shtml)
Despite Russia's acceptance of the principles laid out in international documents
demanding assisted access to education for children with disabilities, in practice assisted
access to education is currently not a priority for the government. At present, of the
estimated 659,000 disabled school-aged children in Russia, only 280,000 attend various
educational institutions, mainly specialized institutions, or are taught at home. The rest of
the children with disabilities are cut off from educational opportunities and deprived of
their constitutional right to an education.
Questions of how to promote the practice of inclusive education in Russia, how to
provide assisted access for the disabled to education, and how to create a supportive
coalition were discussed at the international conference on "Inclusive Education:
Perspectives for Development in Russia," held June 14-15 at Golitsyno, an education
center outside of Moscow.
Conference organizers included Perspektiva, a Russian regional organization for the
disabled, and the World Institute on Disability (USA). Financial support for the
conference was provided by USAID. Russia's Ministry of Specialized Education and
Science also supported the conference.
More than 150 representatives from 22 Russian regions from western Russia to the Far
East participated in the conference. Representatives from Armenia, Georgia, Lithuania,
Uzbekistan, Azerbaijan, Britain and the United States also attended and among them
were specialists, educational organizers, parents of disabled children, and young people
with disabilities. Representatives from social change organizations also attended.
Examples of international experiences in gaining support for inclusive education and
successful models of inclusive education were presented during the conference sessions
as well as the positioning of government structures, educational institutions and social
organizations toward the backing and development of inclusive education. Young
lawyers and parents also discussed the legal rights of persons with disabilities to
accessible education and talked about their efforts to successfully defend their children's
right to education in Russian courts.
As Alexander Vershbow, U.S. Ambassador to the Russian Federation, noted in his
opening speech, "...many experts believe the greatest obstacle preventing disabled
Russian children and young adults from fully integrating into society is discrimination in
equal access to education." [Ambassador Vershbow's entire speech is reprinted in this
issue.]
Conference participants drew up a number of recommendations to ensure a more
effective introduction of inclusive education in Russia, and proposals for governing and
structural bodies that make decisions regarding education for persons with disabilities
included:
 passing normative bills/acts allowing for the realization of inclusive educational
models among the already existing educational institutions, (i.e. kindergartens and
schools);
 persuading those persons with experience in inclusive education, including
representatives of social organizations, parents committees, and educational
institutions, to put these acts into action;
 calculating the expenses associated with educating a disabled child at a local, nonspecialized school and presenting this information to social organizations;
 specifying to federal and regional educational bodies how the organization and control
of access for the disabled to inclusive education will be handled;
 organizing training and continued training in inclusive education for educators,
including the creation of a resource center with consultants to provide teachers from
non-specialized schools with assistance and advice. Also needed is the creation of
internship/work experience/training opportunities in those education institutions
which have successfully implemented inclusive education;
 creating a system of special educational assistants for teachers and educational
personnel; and
 implementing a system of standards for evaluating children who are excluded early on
from the educational system, i.e. how to effectively provide education to those
children with severe or multiple disabilities and who require individual educational
plans.
Proposals for social organizations interested in securing the rights of disabled persons to
a quality education included:
 consolidating the efforts of those social organizations that are interested in introducing
inclusive education by forming a national coalition called "For Inclusive Education;"
 promoting active inclusion of children and young people with disabilities in all
spheres of the educational system: preschool, grades K-11, institutions of higher
learning and in process of attaining job-related skills and training;
 promoting effective models for inclusive education using unified informational
resources and effective exchanges of information; and
 strengthening parental participation and influence in securing education for their child
with a disability.
Denise Roza, Director of Perspektiva, summarized that "the recommendations developed
by administrators, parents, teachers, disability advocates and NGOs attending this
conference gives everyone hope that this critical issue for children with disabilities will
gain additional public support and that the introduction of inclusive education in
secondary schools will receive backing from both regional and federal authorities in the
near future."
A Father's Journey with Autism: Book Review
By Barbara Kolucki (bakoluck@aol.com)
I had numerous professional and personal distractions while reading A Different Kind of
Boy. Some days I thought I would not get back to the books for months. Yet, in spite of a
tough summer, I kept coming back to the book because I was hooked. Because it was so
good.
A Different Kind of Boy: A Father's Memoir about Raising a Gifted Child with Autism
was written by Daniel Mont, an economist who specializes in disability and welfare
issues and who worked as an Assistant Professor at Cornell University, for the U.S.
Government and the World Bank. He is the father of Alex, who is autistic and Simon,
who is Neurologically Typical, or NT. He is the husband of Nannette Goodman.
Alex was born in 1987 and his delivery was atypical. How much this has to do with his
autism, no one will ever really know. But it was the beginning of a plethora of atypical
developmental milestones, from keen observation skills at a very early age, a high I.Q, a
love of spinning objects, difficulties showing emotions to being a math whiz.
Some of these are symptoms of autism, which, according to the Autism Network
International (ANI), typically appear during the first three years of life. ANI, in its
definition of autism also states that "it occurs in approximately 15 out of every 10,000
births and is four times more common in boys than girls. It has been found throughout the
world in families of all racial, ethnic and social backgrounds."
And so, Daniel and Nannette loved, played with and observed their first child, Alex. They
saw his precocity with books and numbers, something that any parent would be proud of.
They tired of his perseveration with Dr. Seuss and rhymes. They worried about his lack
of interest in other children, including his new baby brother, born when Alex was two
years old. They feared even routine journeys through their hometown of Ithaca, where
Alex would scream if anyone attempted to open a door for them - a task he relished as his
everyplace, at all times. And they would die inside when neighbors and strangers gave
them disapproving or strange looks when they were out and about with Alex.
The book details all of these experiences, feelings and the journey of discovery that their
son is autistic. It is so very readable and filled with "ah-ha" moments for other parents of
autistic children and for every lay person or professional reading the book. It should be
required reading for any teacher in training, not only in special education studies, but for
all in education and early child development. And of course it is a gift to all parents of an
autistic child.
Learning the ropes
Dr. Mont intersperses anecdotes from the family's journeys with some of the best
practical parenting lessons for all children, including those with autism. For example, he
talks about teaching rules to Alex, and how life continuously requires adaptation and
exceptions to these rules. But nonetheless, it is important for children to learn these, and
it is absolutely critical for autistic children to learn them as early as possible.
One example is when they were trying to teach Alex how to tell if someone is speaking to
him. They first taught him to look for people looking at him and talking. O.K., that
worked until Alex came back with the observation that if his dad was driving and talking
to him, he was not looking at him. Or, that you can seat yourself and wait to place an
order in a restaurant, unless there is a sign to wait for seating, or unless in a fast food
restaurant where orders are placed at a counter. And when his younger brother Simon
used imaginary play to try to go to the moon - it took a great deal to persuade Alex that
this was not a lie. Alex might miss inferences and body language cues, but he was so
bright that he could always pick out exceptions to the rules, whether concerning math
problems or daily life.
Or, we read about how the family used flow charts and lists to help Alex cope with
emotional situations and his atypical responses to sounds and other sensations. They
learned that logic was often their salvation - except when there was an exception! Alex
was very typical of so many with autism who perceive the world as overwhelming and
confusing, but can learn to adapt and even thrive when structure and certainty can ground
their lives.
It took a few years for the Monts to get the diagnosis of autism. When he was in nursery
school, his teachers called for a conference to discuss his problems and this, together with
gentle pushing from colleagues, persuaded the Monts to have Alex evaluated. When the
diagnosis of autism came back, in part the Monts were relieved, a feeling often echoed by
parents who know something is needed for their child but they are not sure yet what it is.
They then proceeded to advocate for the best education and special services while they
continued to love him as the same son he was before the diagnosis. But, as all parents
know, especially those with children having unique requirements - life can be exhausting.
Learning from peers and role models
Alex attended an integrated school with additional support. They founded an organization
called HiFAN (High Function Autistic Network) to be in touch with and support parents
of autistic children like Alex. They learned all they could about autism, getting in touch
with the Autism Network International (NSI) and every other professional organization
they could locate. But their greatest gift came from hearing the voices of autistic adults who served both as positive role models of a life possible for Alex and taught them more
than anyone else could about life with autism. Following this article you will find a
reprint of "Don't Mourn for Us" by Jim Sinclair, reprinted with permission from Mr.
Sinclair and ANI. Reading it, the Monts learned what people with a variety of disabilities
tell us over and over and over again - that their life has value, adventure, capability and a
future. And, that often, it is society and those without autism (or other disabilities) than
limit one's capacity and potential. And often there is an advantage in living life in this
way. As Nannette Mont says "He thinks outside the box because he doesn't realize there
is a box". This is what many of us working in the disability field say all the time - people
with disability have much to teach the rest of the world about daily adaptations,
flexibility, creativity, etc.
So we watch the Monts breathe a sigh of relief, somewhat at least, about what was
possible for Alex in the future. They attended their first conference for autistic people
where Alex was the one making decisions about the amount of stimulation and
interaction he would have. What a gift to Alex and his family.
Schools and rules
When the family moved from Ithaca, N.Y. to the Washington, D.C. area, they had to find
at least the same level of support for Alex in his second grade classroom and beyond.
Plus, his new school and classroom had to learn about Alex, everything from his telling
the teacher that she was two minutes off schedule when she began a lesson to how Alex
helped his class win the Math Olympiad. The family had their first article written about
them - and here they learned a lesson often shared by parents who have children other
than one who is disabled - that sometimes it is the "other" child who is forgotten, as was
the case in their first article. The family was famous - but it was Alex who called the
shots and decided they would not interview for other articles or TV programs.
The book ends with Alex still in elementary school. Today he is in high school and had
his first summer job at a physics lab at the National Institute of Standards and
Technology. We are told that he continues to be more self-aware about his difference.
Daniel and Nannette Mont still worry about Alex's acceptance in the real world.
Now 17 and quite articulate at expressing himself, especially in writing, Alex has mixed
feelings about his involvement with the non-autistic world. He believes that the emphasis
that non-autistic people put on social interaction and relationships can be a liability
because it fosters a dependence on others for happiness, interferes with decision making,
and leads people to engage in self-destructive behaviors in order to gain acceptance.
Because of this, Alex does not believe "that the lack of social acceptance will hinder my
ability to operate in the real world. I may not make as many friends or chat on the phone
as much as non-autistic people, but I don't believe I will be any less happy for it."
At the end of the book, we learn that Alex has counted 6562 rules he has been given; we
learn from Dan that the maximum amount that a young man like Alex should be given at
one time is three; and that father and son continue to learn from each other...
A Different Kind of Boy: A Father's Memoir about Raising a Gifted Child with Autism
Jessica Kingsley Publishers
116 Pentonville Road
London N1 9JB, U.K.
www.jkp.com
For more information:
www.ani.autistics.us
Follows is a reprint of "Don't' Mourn for Us" by Jim Sinclair
DON'T MOURN FOR US
by Jim Sinclair
[This article was published in the "Our Voice," the newsletter of Autism Network
International , Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the
1993 International Conference on Autism in Toronto, and is addressed primarily to
parents.]
Parents often report that learning their child is autistic was the most traumatic thing that
ever happened to them. Non-autistic people see autism as a great tragedy, and parents
experience continuing disappointment and grief at all stages of the child's and family's
life cycle.
But this grief does not stem from the child's autism in itself. It is grief over the loss of the
normal child the parents had hoped and expected to have. Parents' attitudes and
expectations, and the discrepancies between what parents expect of children at a
particular age and their own child's actual development, cause more stress and anguish
than the practical complexities of life with an autistic person.
Some amount of grief is natural as parents adjust to the fact that an event and a
relationship they've been looking forward to isn't going to materialize. But this grief over
a fantasized normal child needs to be separated from the parents' perceptions of the child
they do have: the autistic child who needs the support of adult caretakers and who can
form very meaningful relationships with those caretakers if given the opportunity.
Continuing focus on the child's autism as a source of grief is damaging for both the
parents and the child, and precludes the development of an accepting and authentic
relationship between them. For their own sake and for the sake of their children, I urge
parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's
no normal child hidden behind the autism. Autism is a way of being. It is pervasive ; it
colors every experience, every sensation, perception, thought, emotion, and encounter,
every aspect of existence. It is not possible to separate the autism from the person--and if
it were possible, the person you'd have left would not be the same person you started
with.
This is important, so take a moment to consider it: Autism is a way of being. It is not
possible to separate the person from the autism.
Therefore, when parents say,
"I wish my child did not have autism,"
what they're really saying is,
"I wish the autistic child I have did not exist, and I had a different (non-autistic) child
instead."
Read that again. This is what we hear when you mourn over our existence. This is what
we hear when you pray for a cure. This is what we know, when you tell us of your
fondest hopes and dreams for us: that your greatest wish is that one day we will cease to
be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you;
you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't
it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of
normal children, your own feelings about parenthood, your own experiences and
intuitions about relationships. And the child doesn't respond in any way you can
recognize as being part of that system.
That does not mean the child is incapable of relating at all . It only means you're
assuming a shared system, a shared understanding of signals and meanings, that the child
in fact does not share. It's as if you tried to have an intimate conversation with someone
who has no comprehension of your language. Of course the person won't understand
what you're talking about, won't respond in the way you expect, and may well find the
whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn't the same
as yours. And autism goes deeper than language and culture; autistic people are
"foreigners" in any society. You're going to have to give up your assumptions about
shared meanings. You're going to have to learn to back up to levels more basic than
you've probably thought about before, to translate, and to check to make sure your
translations are understood. You're going to have to give up the certainty that comes of
being on your own familiar territory, of knowing you're in charge, and let your child
teach you a little of her language, guide you a little way into his world.
And the outcome, if you succeed, still will not be a normal parent-child relationship.
Your autistic child may learn to talk, may attend regular classes in school, may go to
college, drive a car, live independently, have a career--but will never relate to you as
other children relate to their parents. Or your autistic child may never speak, may
graduate from a self-contained special education classroom to a sheltered activity
program or a residential facility, may need lifelong full-time care and supervision--but is
not completely beyond your reach. The ways we relate are different . Push for the things
your expectations tell you are normal, and you'll find frustration, disappointment,
resentment, maybe even rage and hatred. Approach respectfully, without preconceptions,
and with openness to learning new things, and you'll find a world you could never have
imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done-unless non-autistic people are far more limited than we are in their capacity to relate. We
spend our entire lives doing it. Each of us who does learn to talk to you, each of us who
manages to function at all in your society, each of us who manages to reach out and make
a connection with you, is operating in alien territory, making contact with alien beings.
We spend our entire lives doing this. And then you tell us that we can't relate.
Autism is not death
Granted, autism isn't what most parents expect or look forward to when they anticipate
the arrival of a child. What they expect is a child who will be like them, who will share
their world and relate to them without requiring intensive on-the-job training in alien
contact. Even if their child has some disability other than autism, parents expect to be
able to relate to that child on the terms that seem normal to them; and in most cases, even
allowing for the limitations of various disabilities, it is possible to form the kind of bond
the parents had been looking forward to.
But not when the child is autistic. Much of the grieving parents do is over the nonoccurrence of the expected relationship with an expected normal child. This grief is very
real, and it needs to be expected and worked through so people can get on with their
lives--but it has nothing to do with autism.
What it comes down to is that you expected something that was tremendously important
to you, and you looked forward to it with great joy and excitement, and maybe for a
while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you
had to recognize that the thing you looked forward to hasn't happened. It isn't going to
happen. No matter how many other, normal children you have, nothing will change the
fact that this time, the child you waited and hoped and planned and dreamed for didn't
arrive.
This is the same thing that parents experience when a child is stillborn, or when they have
their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's
about shattered expectations. I suggest that the best place to address these issues is not in
organizations devoted to autism, but in parental bereavement counseling and support
groups. In those settings parents learn to come to terms with their loss--not to forget
about it, but to let it be in the past, where the grief doesn't hit them in the face every
waking moment of their lives. They learn to accept that their child is gone, forever, and
won't be coming back. Most importantly, they learn not to take out their grief for the lost
child on their surviving children. This is of critical importance when one of those
surviving children arrived at the same time the child being mourned for died.
You didn't lose a child to autism. You lost a child because the child you waited for never
came into existence. That isn't the fault of the autistic child who does exist, and it
shouldn't be our burden. We need and deserve families who can see us and value us for
ourselves, not families whose vision of us is obscured by the ghosts of children who
never lived. Grieve if you must, for your own lost dreams. But don't mourn for us . We
are alive. We are real. And we're here waiting for you.
This is what I think autism societies should be about: not mourning for what never was,
but exploration of what is. We need you. We need your help and your understanding.
Your world is not very open to us, and we won't make it without your strong support.
Yes, there is tragedy that comes with autism: not because of what we are, but because of
the things that happen to us. Be sad about that, if you want to be sad about something.
Better than being sad about it, though, get mad about it--and then do something about it.
The tragedy is not that we're here, but that your world has no place for us to be. How can
it be otherwise, as long as our own parents are still grieving over having brought us into
the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that
child is not. Think to yourself: "This is not my child that I expected and planned for. This
is not the child I waited for through all those months of pregnancy and all those hours of
labor. This is not the child I made all those plans to share all those experiences with. That
child never came. This is not that child." Then go do whatever grieving you have to do-away from the autistic child--and start learning to let go.
After you've started that letting go, come back and look at your autistic child again, and
say to yourself: "This is not my child that I expected and planned for. This is an alien
child who landed in my life by accident. I don't know who this child is or what it will
become. But I know it's a child, stranded in an alien world, without parents of its own
kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate
for it. And because this alien child happened to drop into my life, that job is mine if I
want it."
If that prospect excites you, then come join us, in strength and determination, in hope and
in joy. The adventure of a lifetime is ahead of you.
Reprint permission: All articles published in "Our Voice" may be freely copied and
shared for personal use, and reprinted in other publications, provided the original author
and publication credits are included in all copies or reprints. If you reprint any of my
articles, I would appreciate being sent a copy of the publication containing my article. My
mailing address is:
Jim Sinclair
P.O. Box 35448
Syracuse, NY 13235
Resources & Book Reviews
EQUITY e-newsletter, Summer 2004: Disability and
Asset Building Communities Working Together
Reprinted from http://www.wid.org/equity
Unfamiliar with asset building? EQUITY brings you articles that educate and inspire. For
the seasoned asset building community member, EQUITY advises on how to better serve
participants with disabilities.
Every month, articles from leaders in the field, program administrators, and actual
participants with disabilities challenge us to narrow the divide, mutually benefiting both
communities. Also included: helpful tips, answers to your questions about disability
issues, periodic federal policy updates, and valuable resources.
In the Summer (July/August) EQUITY: Connecting the Dots: Corporate Finance, Asset
Building, and Disability Communities Working Together
http://www.wid.org/publications/?page=equity
FEATURE ARTICLE
Benefits to Inclusion: A New Market in People with Disabilities
http://www.wid.org/publications/?page=equity&sub=200407&topic=fa
Megan O'Neil, Access to Assets Project Coordinator, summarizes a roundtable discussion
that focused on the stereotypes, barriers, as well as the financial incentives of including
people with disabilities in asset building programs. The roundtable was coordinated by
the World Institute on Disability and included Jeanne Argoff, Disability Funders
Network; Steve Mendelsohn, Law, Health Policy & Disability Center, University of Iowa
College of Law; and Deborah Kaplan, Kathy Martinez, Kevin Dalcamo, and Megan
O'Neil, World Institute on Disability.
PROGRAM OF THE MONTH
Corporate Financial Institutions, Asset Building, and Disability: Making the Connections
http://www.wid.org/publications/?page=equity&sub=200407&topic=pm
National Federation of Community Development Credit Unions (NFCDCU), ShoreBank,
and Washington Mutual have a common characteristic: they all sponsor asset building
programs and have incorporated accessibility features to best serve their customers with
disabilities.
PROFILE OF THE MONTH
Diversity, Disability, and Deb Dagit: Working for an Inclusive Corporate America
http://www.wid.org/publications/?page=equity&sub=200407&topic=profile
Deb Dagit, Executive Director of Diversity & Work Environment for Merck & Co., Inc.one of the world's largest pharmaceutical corporations, insists that disability be included
in the diversity discussion. As one of the country's most well-respected lecturers on
diversity in the workplace, Dagit, a woman with a disability, embodies diversity.
TIP OF THE MONTH
Savings for Working Families Act (SWFA)
http://www.wid.org/publications/?page=equity&sub=200407&topic=tm
In order for Individual Development Accounts to be truly effective, expansion of
program availability is necessary. SWFA would allocate $450 million in IDA Tax Credits
to match the savings of working families and would allow for up to 300,000 IDAs to be
created.
EQUITY RESPONDS
WID Answers Your Questions. Our credit union wants to do more extensive disability
outreach and learn how to serve the disability population better. Any advice?
http://www.wid.org/publications/?page=equity&sub=200407&topic=responds
LEARNING & NETWORKING RESOURCES
Informative websites of interest to both communities
http://www.wid.org/publications/?page=equity-resource
CONFERENCES & EVENTS
http://www.wid.org/publications/?page=conf
CFED'S Individual Development Account (IDA) LEARNING CONFERENCE!
http://www.idaconference.org
Register today for the 2004 IDA Learning Conference: Sharing Our Visions, Forging Our
Paths New Orleans, Louisiana September 21-23!
World Institute on Disability (WID) is a non-profit public policy center dedicated to the
promotion of independence and full inclusion in society of people with disabilities.
WID's Access to Assets (ATA) program provides training and technical assistance to
asset building and disability organizations seeking to improve the inclusion of people
with disabilities in poverty reduction programs. In addition, ATA provides information
and referral services to individuals with disabilities and conducts federal and state policy
analysis on related issues.
NEW! Toll-Free Technical Assistance Hotline: 1-866-723-1201
Do you have questions about asset building strategies or serving people with disabilities?
Please contact:
Megan O'Neil
World Institute on Disability
Access to Asset Project Coordinator
megan@wid.org
Manual on How to Involve Disabled People in
Development Programs
Building an Inclusive Development Community : a new manual on including people
with disabilities in international development programs by MIUSA
Building an Inclusive Development Community: A Manual on Including People with
Disabilities in International Development Programs is a Mobility International USA
(MIUSA) publication sponsored by the United States Agency for International
Development (USAID) and edited by Karen Heinicke-Motsch and Susan Sygall. It is a
toolkit for development agencies and others concerned with the inclusion of people with
disabilities in all areas of the international development process. The manual includes
expert opinions, techniques and guidelines, resource lists, and examples of best practices
and lessons learned from around the world to assist programs in bringing people with
disabilities at all levels into the international development arena.
The opening section of the manual invites readers to conduct an Organizational Self-
Assessment: Checklist for Inclusion, so that organizations and programs can measure
their own level of inclusion, identify areas that need improvement and most efficiently
use the rest of the manual and incorporate its recommendations.
Subsequent sections cover Management Practices and Human Resource Development,
Legal Policy Issues, and Governance as well as Accessibility, Inclusion of Disability in
Delivery of Programs/Services, and International and Regional Responses. Sections
include information as well as examples of best practices and topic specific resources.
An extensive section on Development Topics and Disability includes chapters on Gender
and Disability, Civil Society, Micro Finance, Disaster and Emergency Relief, Refugees
and Disability, Domestic Violence, Women with Disabilities and Health Care, Parenting
with a Disability, Community Based Rehabilitation, Inclusive Education, Agriculture,
and Mental Disabilities and Development. The manual also includes appendices with
supplemental information and resources.
Combining expert opinion, practical strategies, examples of best practice and useful
resources, Building an Inclusive Development Community is a new tool for development
agencies, donors and national and international NGO's to ensure the participation of
people with disabilities in the development agenda and that organizations working to
alleviate poverty and to advance social justice reach people with disabilities, many of
whom are among the poorest of the poor.
For more information about Building an Inclusive Development Community: A Manual
on Including People with Disabilities in International Development Programs, please
visit http://www.miusa.org/publications/manualpr.htm.
Center for Personal Assistance Services Bulletin
June 2004--Volume 1, Issue 2
The Center for Personal Assistance Services provides research, training, dissemination
and technical assistance on issues of personal assistance services (PAS) in the United
States. Personal assistance services (PAS) refer to help provided to people with
disabilities to assist them with tasks essential for daily living. These tasks include
bathing, dressing, getting around, toileting, eating, shopping, remembering things, and
other activities. PAS, along with assistive technology such as wheelchairs, text readers,
and hearing aides, help people with disabilities to participate in activities at home, at
work, and in the community.
The purpose of this newsletter is to provide the latest news on issues relating to formal
and informal PAS, home & community-based services, the PAS workforce, and
workplace PAS within and outside of the Center.
Further detail about the Center staff and advisors can be found at
http://www.pascenter.org/about/
1) CENTER NEWS: PAS Center website
The Center for Personal Assistance Services website now has state-by-state data from the
American Community Survey (ACS) from the U.S. Bureau of the Census. For each state,
there is the number of people with a disability, by type of disability, by self-cafe
difficulty (a measure of personal assistance need), and by demographic variables. In
addition, the Center has also posted the number of PAS workers by state as measured in
the ACS. The state pages also list each state's Olmstead plan and any finished or ongoing
Olmstead-related legal cases.
The website is located at http://www.pascenter.org.
For more information on the state pages, go to:
http://www.pascenter.org/state_based_stats/statshome.php
2) New paper published on Nursing Home Transition
The paper "Nursing home transition: Implementing the Program Providing Assistance to
Caregivers in Transition (PACT)" is now available. This is a report on the first 24-months
experience and accomplishments of an Administration on Aging funded project dealing
with the transition of patients from nursing homes. While there is a substantial literature
on case management interventions attempting to prevent or delay nursing home
placement among those living in the community, and studies of post hospital discharge
planning, there is much less experience with case management interventions targeted to
those in nursing homes with the
goal of helping these residents return to the community.
For more information, go to:
http://pascenter.org/publications/publication_home.php?id=66
3) In-Home Support Services Update
In the May Revision to the Governor's 2004-05 Budget Bill, Governor Schwarzenegger
rescinded the elimination of California's In-Home Support Services (IHSS) Residual
Program that was proposed earlier this year. In lieu of the proposal to eliminate the IHSS
Residual Program, the Administration is pursuing a Federal Independence Plus Waiver to
allow the federal government to pay a share-of-cost for the Residual portion of the
program. If the waiver is not granted, the next option is to amend the State's Medicaid
Plan. Negotiations are underway between the state and the Medicaid program. The May
Revision also proposes implementation of an IHSS Quality Assurance Initiative to more
closely structure and monitor needs assessments and the authorization of service hours.
The purpose of this is to reduce the variability among counties. Language on these
regulations have been drafted. A report prepared for the California HealthCare
Foundation on the budgetary impact of eliminating the IHSS Residual Program will be
released by the Center for Personal Assistance Services by mid summer.
For the preliminary information, go to: http://pascenter.org/news/calongtermcare.php
4) New online report tracks State Systems Change activity
As a consequence of the Supreme Court Olmstead ruling and the move towards the
deinstitutionalization of people with disabilities, most states are now involved in
reforming their long-term care system. The HCBS project of the PAS Center is working
to collate a series of reports describing what changes are occurring in the provision of
home and community-based services. A key influence on state activity in this area is the
Federal 'New Freedom Initiative' (NFI). A new report, just published on the PAS Center
website, describes the NFI and the Federal Systems Change Grant initiative which aims
to help states reform their long-term care systems.
The report 'Federal Systems Change Grants to States and Territories: 2001-2004' provides
state-by-state information on Federal Systems Change Grants (SCGs) for the period
2001-2004. It provides summary information accessible to the public, consumers,
advocates, researchers and professionals. A table shows for each state, the dollar value of
SCG awards by year. The accompanying text introduces the SCG initiative and then
provides for each of the 11 types of SCG, comparative information concerning 7 issues:
(1) financial years awarded, (2) total value of grants awarded by year, (3) duration of
grant, (4) conditions of the grant (purpose, eligibility); (5) state recipients by year, (6)
additional information, and (7) typical activities undertaken by states using this grant.
You can view the report at http://www.pascenter.org/systemschange/
Coming soon!
Continuing the series describing how states are reforming long-term care, the HCBS
project will soon be publishing a paper providing state-by-state information on two other
sources of funding; (1) other Federal grants made to States and, (2) Research and
Demonstration waivers (including the Independence Plus initiative).
5) Expanding Workplace PAS in Iowa
On May 7, the Employment Policy Group, Center for Disabilities and Development at the
University of Iowa convened a Blue Ribbon Panel to assist Iowa in developing long-term
solutions for expanded access to workplace Personal Assistance Services as part of
Medicaid Infrastructure Grant activity. Dr. Susan Stoddard of InfoUse participated in the
Panel, which included representatives from state government, employers, insurers,
employment services providers, researchers, PAS users, PAS providers and the disability
community leaders. After reviewing existing Medicaid policy, waivers and other
resources available in Iowa, the Panel identified a number of barriers to expansion of
workplace PAS, and developed a series of recommendations for expanding availability of
PAS, encouraging employers to incorporate workplace PAS into the fabric of the work
culture, and recruiting more Personal Assistants for the workplace and business world.
The Panel's report as well as related Iowa materials will be available from the
Employment Policy Group and from the PAS Center website. The Workplace team
continues to work with the Policy Group as recommendations are refined and
implemented.
6) PAS Center partner JAN to host 2004 Symposium in September
The Job Accommodation Network (JAN), a Center for Personal Assistance Services
partner, will host their 2004 Symposium in Orlando Florida on September 20-21. Entitled
"Charting the Course: Accommodating and Employing People with Disabilities, the
Symposium will feature separate Accommodation, Best Practices, and ADA/Legal tracks.
For more information, go to: http://symposium.jan.wvu.edu/
7) PAS focus groups
Consumer perspectives on paid Personal Assistance Services (PAS) are being collected in
focus groups with working-age users who are people of color and/or living in rural areas.
Run at Independent Living Centers in Hayward and Oakland, California, Washington,
DC, and Farmington, New Mexico, the focus groups have been composed of African
Americans, Cantonese speaking Chinese Americans, and members of the Navajo nation.
Focus groups will be held with Latino and rural populations in the upcoming weeks. The
results of the focus groups will be posted on the Center website soon.
8) PAS Center will have strong presence at American Public Health Association
Meetings
Researchers at the Center for Personal Assistance Services will present seven papers at
the annual American Public Health Association Meeting in Washington, DC in
November. Presentations will be on a variety of topics including personal assistance
services in Medicaid 1915(c) waiver services, waiver services for the elderly during fiscal
crisis, and personal assistance services in the workplace: voices from the field.
9) Welcome to Valerie Cintron Flores
The Center is also delighted to welcome Valerie Cintron Flores, 3rd year Psychology
student at the University of Puerto Rico. She is participating in the annual COR (Career,
Opportunity Research and Training Program) summer internship program and will be
conducting research on cost neutrality policies for the Medicaid 1915(c) HCBS waiver
programs.
10) SELECTED CONFERENCES DURING JULY, AUGUST, and SEPTEMBER
2004
For more detail about these conferences, go to:
http://pascenter.org/conferences/index.php
July
July 06 - July 08, 2004
2004 Annual Research Meeting - The Premier Forum for Health Services Research
Hosted By: AcademyHealth
Location: San Diego, CA
July 17 - July 22, 2004
The 9th International Conference on Alzheimer's Disease and Related Disorders
Hosted By: Alzheimer's Association
Location: Philadelphia, Pennsylvania
July 18 - July 21, 2004
2004 DMEC Annual Conference
Hosted By: Disability Management Employer Coalition (DMEC)
Location: San Francisco, CA
August
August 01 - August 03, 2004
17h Annual State Health Policy Conference
Hosted By: National Academy for State Health Policy (NASHP)
Location: St Louis, MO
August 13, 2004
Fourth Carework Conference: Bridging Carework Research, Advocacy, and Policy
Hosted By: Carework Network
Location: San Francisco, CA
September
September 08 - September 10, 2004
DPI World Summit 2004: Diversity Within
Hosted By: Disabled Peoples' International (DPI)
Location: Winnipeg, Manitoba - Canada
September 18 - September 20, 2004
2004 National Conference
Hosted By: Direct Care Alliance
Location: Washington, DC
September 20 - September 21, 2004
Charting the Course: Accommodating and Employing People with Disabilities
Hosted By: Job Accommodation Network (JAN)
Location: Orlando, FL
September 29 - October 01, 2004
2004 Annual Southwest Conference on Disability: Creating Common Ground
Hosted By: VSA Arts of New Mexico
Location: Wyndham Sunport Hotel, Albuquerque, New Mexico
Center for Personal Assistance Services
Department of Social & Behavioral Sciences
University of California San Francisco
3333 California Street, Suite 455
San Francisco, D.C. 94118
Telephone: 866-PAS-9577 (866-727-9577)
or 415-502-7190
TDD/TTY: 415-502-5216
E-mail: PAS@itsa.ucsf.edu
Website: http://www.pascenter.org
Newsletter on Americans with Disabilities Act
Reprinted from ADA Watch newsletter (www.adawatch.org)
Opinion:
ADA Myths 14 Years Later
"We cannot afford to take the ADA for granted. Although attitudes about people with
disabilities are generally improving, myths and ignorance linger -- and often influence the
judges, policymakers, employers and others who impact our lives. Fourteen years ago, we
changed the law. Now, we must continue to change hearts and minds."
Headlines:
Soldiers Speak Out: Disability System Criticized
The military's system for compensating soldiers who become sick, injured or wounded
can be as unforgiving as the battlefield: Fewer than one in 10 applicants receives the
long-term disability payments they request.
Fewer Federal Employees with Disabilities
The number of federal employees with severe disabilities has declined by nearly 20
percent over the last decade.
Report: Mentally ill teens 'warehoused' in jails
Thousands of mentally ill youths in the U.S. are unnecessarily put in juvenile detention
centers to await mental health treatment.
Integration Delayed for People with Disabilities
Despite the Supreme Court limits on segregating individuals disabilities, the effort to
move people out of large institutions and into small community homes had been sluggish
and uneven.
Disability Law News:
Court Denies Minister's Disability Discrimination Claim
The Ninth U.S. Circuit Court of Appeals ruled that the First Amendment bars an Arizona
Methodist minister's claim that his church illegally refused to accommodate his attention
deficit disorder and other disabilities.
Judge Orders N.Y. Police to Review AIDS Policy
A Manhattan judge has ordered the police department's medical board to rethink its
"irrational" and "perplexing" decision to deny disability benefits to a police officer who
says she contracted the AIDS virus on the job.
Lawyers with Disabilities Face Employment Discrimination
A California State Bar survey, conducted in a six-month period last year, found that
lawyers with disabilities face high unemployment, a shortage of services, resistance to
reasonable accommodations and "a surplus of skepticism."
Action Alert:
Texas GOP Calls for Dismantling of the ADA
Action is urgently needed to contact President Bush and the Texas Republican Party and
tell them to reverse their call for an amendment to the Americans with Disabilities Act
(ADA) which would eliminate protections for millions of citizens with disabilities.
People in the News:
Marca Bristo Delivers Convention Speech
On the 14th anniversary of the ADA, Marca Bristo spoke at the Democratic National
Convention in Boston. "We have made great strides, yet the real promise of the ADA -inclusion, independence and equality of opportunity -- eludes many of us."
Hugh Gallagher, Disability Crusader Dies
Hugh G. Gallagher wrote an early civil rights law affecting people with disabilities. He
made disability rights not only his agenda but the agenda of America.
William Brown, Lane Attorney, on the ADA
"Much remains to be done," was the message of a keynote address at the FDR estate by
William Brown, the attorney who successfully argued a landmark Supreme Court
Decision, Tennessee v. Lane.
Juliette Rizzo is new Ms. Wheelchair America
Juliette Rizzo of Maryland was crowned Ms. Wheelchair America 2005. She will travel
the country for the next year to speak and advocate on behalf of the more than 50
millions Americans with disabilities.
Events and Organizations:
ADAPT at National Governors Meeting in Seattle
ADAPT blocked intersections around the Westin Hotel headquarters of the National
Governors Association (NGA) summer meeting in Seattle for five hours before
Pennsylvania Governor Edward Rendell agreed to introduce ADAPT's long term care
resolution to the NGA membership.
Inaugural Disability Pride Parade in Chicago
The first International Disability Pride Parade was launched in Chicago on Sunday, July
18. Disabled peoples, their floats, their cars, their wheelchairs, their service dogs, and
their friends all marched, rolled, and danced in a united show of pride.
Welcome to e-bility.com News Update Number 28 June/July 2004
New Spam Regulations
Spam Act 2003: http://www2.dcita.gov.au/ie/trust/improving/spam_home
Under new provisions of the Spam Act 2003 (Commonwealth), which is in effect from
11 April 2004, we want to ensure that you would like to continue receiving e-bility's
newsletter by email.
If you wish to discontinue this service please email S.Vassallo@e-bility.com and put
"unsubscribe e-bility News" in the subject line, or if you would like to use a different
email address, please subscribe online using your preferred email contact.
What's New on e-bility.com?
Brochure Stand: www.e-bility.com/brochure.php
Australian Braille Authority: www.e-bility.com/roundtable/aba.php
The Australian Braille Authority (ABA) is a sub-committee of the Round Table on
Information Access for People with Print Disabilities Inc. The ABA oversees the
development and maintenance of Braille codes and specifications used in Australia.
Braille is the tactile system of reading and writing used by blind people. There are Braille
codes for literary material, mathematics and science, computer notation and music. Since
the literary codes are language dependent they and their dependants such as the
mathematics codes differ between languages. Only for music is there a worldwide Braille
code.
Production of materials in alternate formats: www.ebility.com/roundtable/productionguidelines.php
The Round Table on Information Access for People with Print Disabilities has produced
a number of guidelines and standards on the production of materials in various alternate
formats. These guidelines should be used by anyone producing alternate formats to
ensure quality and usability for those for whom the material is intended. The guidelines
are available for a small charge.
Super lightweight titanium wheelchairs: www.ebility.com/gtkrehab/products/invacare_tilite.php
GTK Rehab have just launched a new range of TiLITE titanium wheelchairs that are
super lightweight and designed for an active lifestyle. The range includes folding and
rigid models with exciting features that make them the next generation Ultimate Ride.
Titanium is light, strong, absorbs vibration, doesn't rust and its satin or polish finish stays
looking new and fresh for longer than enamel. To arrange a demonstration or seating
assessment contact GTK Rehab.
Article of the Month: www.e-bility.com/articles
Short, informative articles to be published in this section are always welcome. If you
have a story you would like to share please drop us a line. Articles recently published
include:
Stone Sculpting: www.e-bility.com/articles/sculptors.shtml
Alistair Green and Garry Curry, are quadriplegic stone sculptors. The two have won
awards for their work and have a dream to establish an arts centre for people with
disabilities. They have set up the Society of Disabled Artists (SODA) and together have
designed many different types of tools to allow people with disabilities to created more
complex sculptures.
Nursing students with disabilities: www.e-bility.com/articles/nursing.shtml
In December of her junior year of nursing school, Christine was in a car accident that left
her a T-four paraplegic. When she got out of the hospital she returned to her nursing
school, one year later, to complete her last semester. In this article she talks about her
experiences as a student nurse with disabilities and what it was like working with
patients.
Going where there are No Limits! www.e-bility.com/articles/nolimits.shtml
No-Limits is an award winning Australian television show on Melbourne's Channel 31 - a
show presented by people with disabilities for people with disabilities. Being on
Community TV, it could be considered somewhat irreverant at times, by some. However,
the regular and guest panelists have a lot of fun and it is a very informative show that
raises awareness about disability issues and rights. Peter Anderson was recently a guest
panelist on the show and this article presents a transcipt from his interview with hosts
Stella Young and Sara McQueenie.
Of wheelchairs and whale watching in Monterey Bay, California, USA: www.ebility.com/articles/whales.shtml
Scott Rains is a Resident Scholar at the Center for Cultural Studies, specialising in
inclusive travel at the University of California in Santa Cruz, USA. His recent article on
whale watching discusses accessibility onboard the cruise boat and local surrounds. He
concludes "all in all, for a dose of outdoor inspiration, I recommend whale watching ...
although it is not for the faint hearted". Scott will be visiting Australia later this year on a
FAMIL grant to research accessible travel in Australia and is a key note speaker at the
upcoming NICAN conference (see Coming Events).
Search engine optimisation and accessibility: www.ebility.com/articles/accessibility_optimisation.shtml
Many of the W3C Web Content Accessibility guidelines, if applied correctly, can have
major benefits in search engine optimisation and internet marketing. This article by Big
Mouth Media shows how search engines, through their algorithms, and search engine
optimisation, have led to a growing interest in making web content more accessible.
What my brother taught me... www.e-bility.com/articles/tiesthatbind.shtml
"What my brother taught me" is a story by Geoff Jordan about growing up with his
brother Chris, who has multiple disabilities. Geoff raises issues around independent
living and people with disabilities, as well as topics such as choice, community,
citizenship, belonging, and making a difference. Geoff's story is part of the The Ties That
Bind Community Engagement Project conceived by The National Film Board of Canada
to inspire people to become more involved as a community.
New technological options for people with physical disabilities: www.ebility.com/articles/telecommunications.shtml
Accessing telecommunication technology has been an ongoing challenge for people with
disabilities. With technology continually changing and mobile phones shrinking in size,
the gap between people with disabilities and telecommunication technology has grown.
Regency Park Rehabilitation Engineering recently trialled and evaluated new
configurable 'off-the-shelf' telecommunication options and network features that can
improve the lifestyle, independence, security and social interaction of people with
physical disabilities. Although mobile phone technologies were the focus of these trials,
personal digital assistant (PDA) and a home phone were also trialled.
What's New on the WWW?
General
Launch of SANE Helpline: www.sane.org
The SANE Helpline provides information about mental illness and referral to support
services. Freecall Australia-wide 1800 688 382 (9-5 EST).
Y-Connection: www.yconnection.org.au
Y Connection is a new web site set up to develop and strengthen connections between
Australians 17-30 years with a disability, who want to live a life outside the stereotypes
sometimes attached to having a disability. It is packed with informative and useful
resources on a wide range of topics, written by young people.
NSW Health Records and Information Privacy Act 2002:
www.lawlink.nsw.gov.au/lawlink/privacynsw/ll_pnsw.nsf/pages/PNSW_index and
www.lawlink.nsw.gov.au/pc.nsf/pages/privhriptrain
The HRIP Act commences on 1 July 2004 and applies to every organisation that is a
health service provider or that collects, holds or uses health information. More
information and free training is available from Privacy NSW.
Technology
The Independent Living Centre NSW has moved! www.ilcnsw.asn.au/
The ILC displays a comprehensive range of products and equipment to assist with day to
day living and can provide information about supplier details and approximate prices, as
well as assistance in selecting items that best suit your needs. Their new address is: 1
Fennell Street North Parramatta NSW 2151. Telephone enquiries: 1300 885 886. All
other calls to 02 9890 0940.
Seniors Computing: www.seniorcomputing.org
The Australian Seniors Computer Clubs Association is the national peak body for seniors
and technology, providing barrier-free access for members with a disability.
Coming Events
Inclusive Learning Technologies Summer School 2004
About: Technologies designed to support students with disabilities and/or learning
difficulties.
When: 9 - 11 November 2004.
Where: Surfers Paradise, Queensland.
Web: www.spectronicsinoz.com/info.asp?info=summer_school
Out of the Blue - NICAN's 5th National Conference:
About: Valuing the Disability Market in Tourism.
When: 20-22 September 2004.
Where: Perth Australia.
Web: www.nican.com.au/education/conference.asp
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Access Currents, Volume 10, No.3 May/ June 2004
New ADA Accessibility Guidelines Cleared for July Publication
On June 25, the Board cleared its last hurdle before moving to publish updated
accessibility guidelines for facilities covered by the Americans with Disabilities Act
(ADA). The Office of Management and Budget, the Federal government's regulatory
clearinghouse, approved the new guidelines after a 120-day review. The Board is now
preparing the document for publication, which it plans to release on July 26, the 14th
anniversary of the signing of the ADA into law.
The new document overhauls and updates the ADA Accessibility Guidelines and
includes a number of revisions both large and small. It marks the first full-scale update of
the guidelines, which were originally published in 1991 on the first anniversary of the
ADA. The published rule also will include updated guidelines for Federal facilities,
which are covered not by the ADA but by an earlier law, the Architectural Barriers Act
(ABA). Both the ADA guidelines and the ABA guidelines, which the Board updated
jointly to make them more consistent, address access in new construction and alterations
and contain scoping provisions, which indicate what has to comply, and technical
specifications, which spell out how compliance is to be achieved.
The published guidelines will not be mandatory on the public. Instead, they will serve as
the baseline for enforceable standards (which are mandatory) maintained by other
agencies. These other agencies, such as the Department of Justice under the ADA, must
update their standards according to the Board's guidelines. In doing so, they will indicate
when the new requirements must be followed. The existing standards are to be used until
the effective date specified for the new standards.
The Board will post the guidelines on its website once they are published and will
provide print copies free upon request. Technical assistance on the guidelines will be
available through the Board's toll-free line, and the Board will offer training on them at
various events across the country in cooperation with other organizations. Requests for
training on the new guidelines or existing Board guidelines and standards should be
directed to Peggy Greenwell, the Board's training coordinator, at (202) 272-0017 (v),
(202) 272-0082 (TTY), or training@access-board.gov (e-mail).
Board to Organize Advisory Committee on Courthouse Accessibility
The traditional design of courthouses, particularly courtrooms, poses unique challenges to
access for persons with disabilities. Most courtrooms feature a variety of elevated spaces,
including witness stands, jury boxes, and judges' benches, within areas limited by the
well of the court and spectator seating. Determining the best way to provide access to
these spaces can be difficult. The Board is undertaking an effort to develop information
on courtroom design that addresses these and other aspects of accessibility as part of an
outreach initiative that will highlight and promote access to courthouses. While the Board
has established guidelines for courthouses under the ADA which cover access to
courtrooms, many have sought guidance on how compliance can best be achieved.
Additional information will be helpful that explores new or innovative design solutions.
At its May meeting, the Board approved a plan to establish an advisory committee to
gather and develop this information. Advisory committees allow for a cross-section of
different interests and stakeholders to advise the Board on particular issues. They have
played an instrumental role in the Board's development of guidelines and standards.
However, this committee will not be tasked with making recommendations for new
guidelines. Instead, its mission will be to advise the Board on issues related to the
accessibility of courthouses, particularly courtrooms, including best practices, design
solutions, promotion of accessible features, educational opportunities, and the gathering
of information on existing barriers, practices, recommendations, and guidelines.
Through a notice published in the Federal Register on June 25, the Board requests
applications for representatives to serve on the committee. The Board seeks to include
members representing designers and architects, disability groups, members of the
judiciary, including judges and court administrators and organizations representing them,
the codes community and standard-setting entities, government agencies, and others with
an interest in the issues to be explored. The committee will be structured to represent a
balanced cross-section of different interests.
The published notice, which provides instructions on submitting applications, is posted
on the Board's website at http://www.access-board.gov/courthouse.htm. Print copies can
be ordered by calling the Board's publication order line at (202) 272-0080 (press "2," then
"1") and requesting publication S-44 (Courthouse Access Advisory Committee notice).
Persons using a TTY should call (202) 272-0082. Those who would like the notice in an
alternate format should specify the desired type (cassette tape, Braille, large print, or
computer disk). Applications must be received by August 24, 2004. The Board will
follow-up with a notice announcing those named to the committee and the date of its first
meeting. For further information, contact Elizabeth Stewart of the Board at (202) 2720042 (v), (202) 272-0082 (TTY), or stewart@access-board.gov (e-mail).
Board to Hold Public Meetings in Chicago in October
Every year the Board holds a public meeting in a different city to discuss various aspects
of accessibility and the work of the Board. These town meetings typically focus on topics
that relate to the Board's rulemaking agenda and allow members of the public to discuss
issues of accessibility with Board members in an informal setting. They also provide an
opportunity for Board members to visit sites and explore access issues in greater depth.
Chicago will be the site of this year's meeting, which is tentatively scheduled for October
27 - 29. The meeting will be used to further advance and promote Board initiatives
concerning passenger vessels, courthouse accessibility, and international outreach. As
part of its work on new guidelines for passenger vessels, the Board will hold an
information meeting on its passenger vessel rulemaking. Materials related to this
rulemaking will be released in advance of the meeting.
The Board also intends to visit area judicial facilities to help promote its outreach
initiative on access to courthouses. The Board is also exploring plans to participate in the
Fifth International Conference on Justice Design that is being held in Chicago at the same
time. Organized by the American Institute of Architect's Committee on Architecture for
Justice, the conference will focus on growing challenges and opportunities justice-system
professionals and design professionals face in designing court facilities for the future. To
further its work on international outreach, the Board will meet with representatives from
Canada and Mexico to discuss collaborative initiatives on promoting accessibility.
Research Underway on Surfacing Treatments for Play Areas and Trails
Surfacing at play areas poses challenges to accessibility since materials must be used that
are suitable for cushioning falls yet firm and stable enough for wheelchair maneuvering.
Choosing materials that are sufficiently accessible is also an important consideration
when developing outdoor trails. Guidelines the Board issued under the ADA for play
areas address surfacing and reference industry standards for impact attenuation and
wheelchair maneuverability.
The Board is sponsoring research on enhancing the accessibility of engineered wood
fiber, a popular surfacing material, and various binding agents that can enhance its
usability and reduce maintenance. This study, which was initiated in 2002, is being
conducted by the U.S. Forest Service's Forest Products Laboratory. In Phase I,
researchers analyzed various surface treatments that had the potential of enhancing the
firmness and stability of engineered wood fiber. Laboratory testing was conducted on 18
different test bed configurations. The results narrowed the viable candidates down to 8
configurations for further testing in Phase II, which involved four-foot test beds in
Madison, WI that were exposed to a wide range of climatic conditions for 12 months,
including freeze-thaw cycles, rain, and heat. Based on the results, two binding agents (a
synthetic latex and a polyurethane) were selected for further testing in Phase III.
Phase III of the study, now underway, involves full-scale field assessments at
playgrounds in Madison, WI, Berkeley and San Diego, CA, and Loudoun County in
northern VA. The Madison test site, installed last fall, also includes a beach trail. Fieldtesting at these sites will be conducted over a 12-month period. For further information
on this study, contact Bill Botten (202) 272-0014 (v), (202) 272-0082 (TTY), or
botten@access-board.gov (e-mail). A report on Phase I, "Improved Engineered Wood
Fiber Surfaces for Accessible Playgrounds," is posted on the Board's website at
http://www.access-board.gov/research&training/play-surfaces/report.htm.
New Edition of ANSI Standard Published
A new edition of the American National Standards Institute (ANSI) A117.1 standard, a
voluntary consensus standard that provides technical criteria for accessible buildings and
facilities, is now available from the International Code Council (ICC). Referenced by the
International Building Code (IBC) and various state codes, the ANSI A117.1 standard
has provided a baseline for accessible design for over 40 years. The Board's guidelines,
including those it originally published under the ADA, derive in large measure from
earlier editions of the ANSI standard. However, various differences existed between
them. The Board and the ANSI A117 Committee coordinated extensively in the update of
their respective design documents so that these differences could be reconciled. As a
result, this latest edition of the ANSI standard (ICC/ANSI A117.1-2003) and the
technical provisions of the Board's updated ADA and ABA guidelines have been largely
harmonized.
The ICC, which maintains comprehensive and coordinated national model construction
codes, including the IBC, serves as the secretariat of the ANSI A117 Committee. The
2004 supplement to the IBC will reference this latest edition of the ANSI standard.
Copies of the ICC/ANSI A117.1-2003 standard, as well as earlier editions, are available
for purchase from the ICC. For further information, visit the ICC's website
http://www.iccsafe.org (ordering instructions are provided in the ICC store section under
the "Accessibility" category) or call the ICC at (703) 931-4533.
Report Issued on International Workshop on Wheeled Mobility Aids
A report from an international workshop on space requirements for wheeled mobility aids
held last October in Buffalo is now available. Organized by the Rehabilitation
Engineering Research Center (RERC) on Universal Design with sponsorship from the
Board, the workshop helped define research objectives in determining space requirements
for mobility aids in built environments. It brought together more than 60 experts in the
fields of human factors research, data analysis and demographic studies, disability
research, and the design of mobility aids from the U.S., Canada, the United Kingdom,
and Australia.
The published report summarizes submitted papers, presentations, and major findings of
the workshop. Papers presented included a critical review of recent anthropometry
research of wheeled mobility users and assessments of trends and issues in wheeled
mobility technologies, disability data and demographics, and lift and ramp technologies.
There were also presentations made on related research from other countries,
anthropometry and accessibility guidelines, long-range research plans, and human
modeling software. The findings include recommendations to the Center on a project to
develop a database on human measures that will take into account the various types of
mobility aids now in use. The report, as well as workshop's papers and the presentations,
are available on the Center's website at http://www.ap.buffalo.edu/idea/space workshop/.
For more information, contact the Center at (800) 628-2281 or rercud@ap.buffalo.edu (email).
TSA Posts Updated Tips for Air Travelers with Disabilities
The Transportation Security Administration (TSA), a division within the Department of
Homeland Security responsible for protecting the nation's transit system, has posted
updated guidance for air travelers, including those with disabilities, on security screening
procedures. This information explains the rights of passengers with disabilities and
details necessary screening procedures. Guidance is provided concerning different types
of disabilities and assistive devices. These tips are posted on TSA's website at
http://www.tsa.gov/public/display?theme=156.
"Access Currents" is a free newsletter issued by the Access Board every other month by
mail and e-mail. Send questions or comments to news@access-board.gov or call (800)
872-2253 ext. 0026 (voice) or (800) 993-2822 (TTY). Mailing address: 1331 F Street,
N.W., Suite 1000; Washington, D.C. 20004-1111.