Disability World
A bimonthly web-zine of international disability news and views
Available on the web at http://www.disabilityworld.org
Contents, Volume 23, April-May 2004
International News & Views ............................................................................................ 3
Anthony Babington: Disabled British Judge, Historian & Campaigner, 1920 - 2004 ... 3
Operation Wheeler Dealer: U.S. Government's Crackdown on Wheelchairs Highlights
Tensions between Health and Disability Policy ............................................................. 6
Close the Institutions for the Intellectually Disabled: Everyone Can Live in the Open
Society............................................................................................................................. 8
Social Entrepreneurs: A New Brand of Disability-Rights Activists ............................. 18
Evaluators of IDEAS Project Find Disability World Provides Unparalleled Global
Information Service ...................................................................................................... 22
Japan: The Dawning of a Society for Disability Studies .............................................. 26
New Disability Point Person at the White House ......................................................... 28
Kenya Forum Held on African Views on UN Disability Convention .......................... 29
Norway's Support for Disability and Development Projects ........................................ 33
CBR Service Network Pioneer Honoured by Pakistan ................................................. 35
Rehabilitation International's position paper on the Right to [Re]habilitation ............. 37
MDAC: Ill-treatment and Neglect of People with Mental Disabilities in Romania ..... 44
The Disabled and the Rwanda Genocide: The untold story ......................................... 47
Read Online Summaries of UN Disability Convention Meetings ................................ 50
World Blind Union position on International Classification of Functioning ............... 50
World Health Organization's Disability Unit Requests Support .................................. 53
Prosthetics/Orthotics Training Course to be held in India ............................................ 54
Disability Studies Quarterly Call for Papers: Special Issue on Technology & Disability
....................................................................................................................................... 55
Call for Papers: Regional Seminar on Childhood Disability, Dhaka............................ 57
Second Regional Seminar On Childhood Disability .................................................... 57
Call for Papers: Special Issue of Radical History Review on "Disability and History" 58
Independent Living ......................................................................................................... 59
Preserving the Disabled People's Movement ................................................................ 59
Community Support for Adults with Autism in Japan: The Example of Keyaki-no-Sato
....................................................................................................................................... 61
"Reality is Mud" - Native American Forum on Disability Issues ................................ 64
Empowering Disabled Youths to Gain Access to an Education in Russia and the
Commonwealth of Independent States (CIS) ............................................................... 70
Independent Living briefly ........................................................................................... 72
Access & Technology ...................................................................................................... 76
A Visit to the Virtual World: Computer-adaptations for disabled people .................... 76
Bangladesh: The Promise of Information Technology for People with Disabilities .... 79
Global Universal Design Educator's Calendar .............................................................. 83
New Disability Bill must go full steam ahead on transport rights says DRC ............... 90
May 2004 Global Access Travel E-Zine ...................................................................... 91
Ljubljana's commitment to accessibility, recognised by the European Mobility Award
2004............................................................................................................................... 94
Heleen plays her special adapted piano ........................................................................ 95
Proposal: Direct Payments for Assistive Technology .................................................. 97
Brief Report of the First Seminar on Universal Design .............................................. 101
New Online Course on "Building Careers in Design" ................................................ 104
Employment................................................................................................................... 105
Disability Employment Strategy in Afghanistan ........................................................ 105
Developing Entrepreneurship Among Women with Disabilities ............................... 109
Report of Gladnet 2003 Meeting on Employment Research ...................................... 113
Employment Nondiscrimination Policies and Practices in the U.S. and U.K. ........... 118
Study Looks At Employment Rates of Illinois Graduates with Severe Disabilities... 123
RRTC E-newsletter ..................................................................................................... 125
Governance & Legislation ............................................................................................ 126
Disabled People & Education in Afghanistan ............................................................ 126
Inquiry into Australia's Disability Discrimination Act ............................................... 130
People with Mental Disorders and the Disability Pension System in Japan............... 130
Liberia: Call for Self-Representation .......................................................................... 133
Sebenzile Matsebula of South Africa: A Voice in the Presidency ............................. 134
Arts & Media ................................................................................................................. 140
New Georgian Disability Coalition Requests Videos for National Public Education
Efforts ......................................................................................................................... 140
Disability & Communications .................................................................................... 141
Quick Web References: Where do I find...? ............................................................... 141
Superfest XXIV-June 5, 6 in Berkeley: 11 Winning Films ........................................ 143
Quadriplegic Directs Comedy About Quadriplegia .................................................... 145
Arts & Media briefly................................................................................................... 146
Women ........................................................................................................................... 148
Disabled Women on the Web ..................................................................................... 148
Madagascar: Creating a Support Center for Disabled Young Women ....................... 148
Madagascar: Creation d’un Centre d’insertion Scolaire et Professionnelle des Filles
Handicapees Physiques ............................................................................................... 150
Newsletter Features Mother/Daughter Relationships ................................................. 152
Call for Participants in Study of Menopausal Health Issues....................................... 152
"Scared at School: Sexual Violence Against Girls in South African Schools" .......... 153
Women briefly ............................................................................................................ 155
Children & Youth ......................................................................................................... 155
Afghanistan: Community Based Approach to Parents with Disabled Children: Reality
or Ambition? ............................................................................................................... 155
Segregation/Integration of U.S. Schools Reviewed .................................................... 159
South Africa: innovative approaches to including children with disabilities ............. 161
Resources & Book Reviews .......................................................................................... 166
First Self-Advocacy Dictionary Requests Submissions ............................................. 166
US Census Facts for Features on Disability ............................................................... 170
The Drum Beat - 251 - Why Invest in Communication for Immunisation? ............... 173
EQUITY: Newsletter on Disability & Assets Management ....................................... 178
North American Clearinghouse on ICF Messages...................................................... 179
National Technical Assistance Center (National Technical Assistance Center for Asian
Americans and Pacific Islanders with Disabilities) .................................................... 188
International News & Views
Anthony Babington: Disabled British Judge, Historian
& Campaigner, 1920 - 2004
By M. Miles (m99miles@hotmail.com)
Born in 1920, Anthony (Tony) Patrick Babington suffered severe injuries in battle in
1944. He lived a further 60 years pursuing, against considerable odds, a career as
barrister, judge, writer and social campaigner with significant paralysis and speech
impediment, dyslexia and dysgraphia, also tuberculosis, recurrent neurological problems
and a persistent sense of humour. One of the more remarkable disabled British men of his
century, he embodied the heroic and the ordinary, the convivial and the lonely, the
participant in powerful insider groups and the neighbour of the proverbial Man on the
Clapham Omnibus.
Young Babington belonged to a well-off Anglo-Irish family, but his father was ruined
financially and died in 1930 leaving the mother to raise her children on slender means.
Social divisions were sharp in England of the 1930s. The boy lost his privileged lifestyle
and tasted the lives of those whom he had been taught to regard as inferiors. As an old
man, he recalled adjusting easily to frugality and liking most of the boys at the ordinary
school he now attended. He joined the Officers Training Corps, and on leaving school
worked in a press agency, planning to study law later.
When war broke out in 1939, the OTC experience started Babington on a rapid rise from
corporal to company commander, followed by a free fall to near-corpse level. In
September 1944 the troops he commanded had pressed across newly liberated Belgium,
then moved toward Arnhem against strong German defence. A shell blast caught him,
resulting in complete paralysis - "My brain seemed now to have lost all contact with my
body". Stretchered back to a first aid post, he heard a sergeant question whether they
should use the sole working ambulance to take this dying man to the casualty clearing
station. They trucked Babington to Brussels and he was flown to England.
In hospital, Babington was slowly coaxed back to life, some mobility, and the beginnings
of speech. His fellow wrecks were pessimistic over prospects, believing that when the
war ended, "severely disabled ex-servicemen would be brushed aside and consigned to
oblivion," and they would "always be regarded as freakish and apart." Babington later
reflected that this had not been his experience. "I soon discovered that the more you can
forget your own disabilities, the more they will be forgotten by those around you."
Through sheer cussedness and lack of any other plan, Babington persisted with his
original aim to become a barrister. This required the means and capacity, over several
years, to study and pass Bar exams, serve an apprenticeship with a senior barrister, then
persuade a group of barristers to offer him a place in chambers where he could try to
build up a practice, in a period when there was a large backlog of new entrants competing
to enter the profession.
Learned people advised, quite accurately, that his neurological injuries would be
aggravated by serious study; his damaged speech would never meet a barrister's need of
ready rhetoric; even fit, qualified and established barristers often struggled to make a
living. Perhaps some also perceived, as Babington did later, that he was too straight a
man to perfect the art of arguing convincingly for cases he did not really believe in. A
few voices told him to follow his dream. Others, while explaining why it would not work,
still helped him over obstacles. Slowly he got the first requirements into place -- and
promptly came down with TB and another long stay in hospital.
Through these vicissitudes, Babington seems to have been a keen observer of his fellow
humans, and a connoisseur of the charms of young women among them. He did not
pretend to like everyone he met; but his many anecdotes, even about the unlovable, still
leave them some dignity. Amidst the law tomes and depressingly recurrent
hospitalisations, Babington was acquiring a quality indispensable for a competent judge:
the knack of understanding the huge variety of other people's lives and business, and
entering imaginatively into the everyday situations that had legal outcomes. During
months of waiting for a medical clearance, or waiting for legal work to come in, he
turned his sole functional hand to writing, and supplemented his meagre War Disability
pension. His Christian faith, to which he attributed his lifelong fortitude, could
accommodate robust popular theology, such as "God helps those who help themselves"!
He qualified, he found a niche in chambers, it all disintegrated again with a long illness,
he came back and picked up his career once more, prosecuted cases for the Post Office,
and finally in 1964 landed a job suiting his interests and abilities, as a stipendiary
magistrate at Bow Street, London's busiest court. The Swinging Sixties were in full
boom, and Babington was soon in the public eye of a storm when he had to decide a
moral issue of national importance: whether "a female who fully exposed her breasts in a
public place was committing a criminal offence". It was a long hot summer, and
newspapers reported widespread sightings.
Three flagrant cases were ready for trial, and the Chief Magistrate chose Babington for
this interesting task. "'Whatever you decide,' he said, 'a whole lot of people are going to
be furious with you. But you're the youngest magistrate on the Bench at the moment, and
you should be more "with it" than the rest of us. Apart from that, you'll have longer to
live down your unpopularity.'" With the eyes of Britain upon him, and his own focused
on the offending items, Babington scratched his wig and found it not conducive to public
order for the current conventions of decency to be so openly flouted. Soon afterward, the
contentious flaunting of bosoms ceased; but as Babington noted with characteristic irony,
that could have been because the weather turned cold. He must have been wryly amused,
after another forty years in which the western world seemed to reach saturation with
images of female flesh, to learn that a real-life flash of breast on American tv could still
raise an uproar.
Babington continued to produce books and articles on law, war and history, from
personal experience and research, throughout his forty years of legal service and fifteen
of active retirement. His energetic membership and officership of PEN, the authors'
organisation, gave many occasions for international jaunts. As a Circuit Judge from 19721987, he had to steer carefully around the restrictions on serving judges entering
controversial public debates. He found these rules irksome, partly because his concept of
being a judge required him to be better informed than most on the outcomes of 'justice'.
To have "a better understanding of the nature of the sentences I was passing", Babington
got a probation officer to arrange for him to make regular visits to prisons, borstals and
detention centres, where he could speak to governors, staff and inmates about their actual
experiences of detention, bail, life 'inside', and the effects of these practices.
Reflecting on the realities of serving in live battle conditions, Babington was convinced
that the Armed Forces had often been brutal, stupid and unjust in their treatment of men
traumatised by continuous shelling. As a distinguished combatant, wounded, patched up,
fighting again, being nearly destroyed, and honoured with the French Croix de Guerre,
his compassionate view carried more credibility than that of people whose opinions were
purely theoretical. His For the Sake of Example in 1983 criticised the Army's World War
I policy of executing men convicted of desertion or cowardice. In 1997 his Shell-Shock
reviewed in detail the changing official views of war trauma. Babington continued into
the new millennium to campaign with others for an official gesture of rethinking, in the
form of a retrospective pardon for men convicted by clearly prejudiced and incompetent
courts.
Considering the disabilities and infirmities he had overcome or ignored in himself, a
lesser man might have been indifferent to the indignity inflicted on those long dead who
had displayed less mental fortitude. But Anthony Babington knew that the injustice
damaged both those who suffered it, and those who meted it out. He had seen and
understood both sides.
Sources
Babington A. (1983) For The Sake of Example: capital courts-martial 1914-1920 .
London: Cooper.
Babington A. (1997) Shell-Shock: a history of the changing attitude to war neurosis .
London: Cooper.
Babington A. (2000) An Uncertain Voyage . Large Print Edn (2003). Leicester:
Ulverscroft.
Babington A. (2000, Nov. 30) Letters to the Editor. The Times , London.
Fryer J. (2004, May 19) Anthony Babington. The Guardian , London.
Obituaries. (2004, May 17) Anthony Babington. The Times , London.
PEN (tributes from UK members) (2004) His Honour Judge Anthony Babington.
www.englishpen.org/membership/hishonourjudgeanthonybabington/ accessed on 19 May
2004.
Who's Who 2001 . London: Black.
Operation Wheeler Dealer: U.S. Government's
Crackdown on Wheelchairs Highlights Tensions
between Health and Disability Policy
By Katherine D. Seelman, Ph.D. (kds31@shrs.pitt.edu) with Mark Schmeler, M.S.,
OTRL, ATP
In 2003 the U.S. Centers for Medicaid and Medicare Services (CMS) launched project
"Operation Wheeler Dealer" to crack down on power wheelchair fraud in the United
States. Operation Wheeler Dealer stimulated a mighty stream of responses from
consumers, clinicians and industry who view the project and subsequent attempts by
CMS to clarify its position as imposing further restrictions on the availability of power
wheelchairs for those who need them. Wheeler Dealer may be a platform to launch more
comprehensive challenges to Medicare as coalitions form to bring about a second
generation of Disability Policy.
CMS's September 2003 get-tough stance on power wheelchair reimbursement was
precipitated by what it called an explosive growth of Medicare payments for power
wheelchairs over the past few years. A CMS representative in Dallas, Texas cited an
increase in claims caused by fraudulent submissions by providers resulting in
significantly increased reimbursements. In December 2003, CMS issued a clarification of
its power wheelchair coverage policy. To some, the clarification appeared to revert back
to a particularly restrictive 1985 provision that requires power wheelchair beneficiaries to
be otherwise bed or chair confined to qualify for any type of wheelchair. The Wheelchair
industry representatives, clinicians and consumers were invited to air their concerns about
Wheeler Dealer at two listening sessions CMS held in Baltimore, Maryland. The health
mobility industry is particularly concerned with reimbursement issues. They argue that
CMS's eligibility guideline "of otherwise bed or chair confined" is too ambiguous and
unclear. CMS should adopt the guideline of "functional nonambulation" which indicates
that a user's ability to perform activities in the residence is restricted.
Clinicians have primary responsibilities to their professional codes of ethics and
standards of practice. These codes and standards require that they do no harm to their
clients, many of whom may be harmed if they do not have access to equipment.
Clinicians recommend that CMS adopt a standardized, objective definition of
nonambulatory. The World Institute on Disability and other consumer groups interpreted
Operation Wheeler Dealer as a severe blow to citizens as tens of thousands of Medicare
beneficiaries who need power wheelchairs to improve their health and quality of life
could lose access to these devices. They expressed frustration that the CMS process
provided no appropriate forum to include input from beneficiaries or their advocates. In
March, 2004 CMS retracted the clarification. Interested parties were left with a host of
questions. However, several coalitions of industry, clinicians and consumers are poised to
more broadly challenge Medicare policy.
Medicare does not have an assistive technology benefit category so mobility equipment is
categorized within a durable medical equipment (DME) benefit category. CMS's
interpretation of DME as equipment primarily for use in the home sharply contrasts with
the American with Disabilities Act. The ADA names technology as an important means
to support equal opportunity and participation in society. The health mobility industry,
clinicians and consumer coalitions have responded to these policy contradictions by
developing platforms for change and organizing coalitions to deliver the message.
Consumers and providers formed the ITEM Coalition (Independence Through
Enhancement of Medicare and Medicaid) http://www.itemcoalition.org/ . The health
mobility industry has formed Restore Access to Mobility Partnership, RAMP. Both have
attacked CMS's restrictive interpretation of ambulation.
These coalitions have highlighted differences in approaches to eligibility for wheelchairs
and other equipment by two key U.S. government agencies, the Social Security
Administration and CMS. CMS limits durable medical equipment to use primarily within
the home. Social Security guidelines provide examples of equipment use outside the
home. In a letter to the Secretary of the Department of Health and Human Services, the
Rehabilitation Engineering and Assistive Technology Society of North America
(RESNA) suggested that CMS restrictions do not conform to evidence from medical
research. RESNA compared CMS' focus on testing a client's muscle strength to Social
Security's more prevention-oriented consideration of the impact of repetitive use of
muscles on individual function and health. RESNA and other organizations also argued
that fraud may be more effectively checked by the adoption by CMS of certification
requirements for wheelchair providers rather than placing further restrictions on
wheelchair availability. In another context, Mark Schmeler, a Clinician at the University
of Pittsburgh's Center for Assistive Technology pointed to another example of
contradiction, this time between two programs CMS administers. The Medicaid-based
Pennsylvania Medical Assistance program refers to a condition in which the individual
lacks functional ambulation. Function inevitably leads to questions about capacity to
carry out activities not merely questions about medical condition.
AIMMM (Advancing Independence Modernizing Medicare and Medicaid) is perhaps the
coalition most sensitive to the contradictions between Medicare and the ADA. Founded
by Bob Williams and Henry Claypool, AIMMM has the benefit of their vast experience
as advocates and their years of service as advisors to the Department of Health and
Human Services. A visit to the website at www.aimmm.org will almost immediately
bring the reader to a quote from the ADA on equality, participation and independence.
AIMMM is advocating for a second generation of disability legislation that will
modernize Medicare and Medicaid. Taking aim at CMS' homebound restrictions on
eligibility to benefits from home health care services and in-the home restrictions on
durable medical equipment, including wheelchairs, AIMMM provides examples of the
contradictions between disability policy and health policy. The ADA, the Ticket to Work
and Work Incentives Improvement Act and other disability policy identifies technology
and personal assistant services as a means of realizing full participation in the
community. Medicare policy routinely restricts coverage of these services to the home.
Operation Wheeler Dealer is a platform from which to launch a more comprehensive
effort to bring U.S. health policy in line with successes in medicine and Civil Rights.
Congressional hearings are on the horizon to explore Operation Wheeler Dealer.
Americans highly value Medicare. However, they are living longer and increasingly with
challenges to their capacity to be active while maintaining themselves in their homes and
communities. The Medicare framework is a framework of conditions and diseases, the
International Classification of Disease (ICD). Decision makers within Medicare have
been trained in medical specialties that are at ease with the World Health Organization's
International Classification of Disease but not so much with the 2001 World Health
Organization's International Classification of Functioning, Disability, and Health (ICF).
The ICF, like the ADA, recognizes the relationship between availability of technology
and participation by people with disabilities in society. In order to meet the needs of
people with disabilities and elders to lead active lives in their communities, not only in
their homes, Medicare will certainly have to open its door to consumers-- and more fully
open it to practitioners of physical medicine and physiatry, the health-related
professionals and to assistive technology experts.
Close the Institutions for the Intellectually Disabled:
Everyone Can Live in the Open Society
By Karl Grunewald, M.D., Professor, Former Head of Division for Care of People with
Disability, National Board of Health and Welfare, Stockholm
(karl.grunewald@swipnet.se)
Editor's note: Karl Grunewald was one of the driving forces behind closing Swedish
institutions and is now working towards the same objective in Eastern and Central
Europe.
"All men are born free and equal in dignity and rights." UN 1948
A society that discriminates against its disabled citizens is a disabled society.
Human Rights are Human Only if They Refer to Everyone
In the 1920s the philanthropic approach to care for people with disabilities subsided as
ideas concerning racial hygiene changed the way in which people with disabilities were
viewed. The institutional system was developed and people with intellectual disabilities
were increasingly isolated from society.
Forced sterilizations were performed in large numbers throughout the western part of the
world, and in Germany, under the Nazi regime, a large number of intellectually disabled
children, teenagers and adults were murdered.
No other group of people has been subject to the same levels of encroachment on their
integrity, as well as prejudiced abuse as children and adults with intellectual disabilities.
Despite the fact that the human rights include people with disabilities, it is still
considered acceptable to deny them access to the open society and confine them in
institutions.
Today, the institutions are the last remaining manifestation of past, collective ideologies,
that gave society the right, and the power, to separate certain people from the rest of the
community and limit their freedom, influence and life conditions.
There is evidence that no people with disabilities need to live in institutions, no matter
how profound their disabilities are. And more importantly: To live in the open society
leads to an increased degree of independence and personal development.
In Sweden and Norway all institutions for people with intellectual disabilities have been
closed. As a result, destructive behavioural patterns have diminished or disappeared
altogether to a degree that no one could have foreseen. Prejudices have been torn down,
the solidarity with people with intellectual disabilities has been strengthened and the
humanitarian forces in society have gained influence.
Inclusive living has had no negative effects or consequences. Furthermore, in the long
run it is more economically sound, due to the good results.
As a result, the right to live like you and I do has become a political issue.
No one would want to live in an institution, the way many people with intellectual
disabilities are forced to do.
No one would choose to live apart from his or her beloved ones and outside the
fellowship of the open society.
No one would want to spend his life being dependent on persons he has not chosen
himself.
Psychological Effects of Living in an Institution
A vast amount of research has been done on the psychological effects of living in an
institution. In general, the negative effects are less severe when the institution is modern
and small scale. But even in small institutions there is a marked difference compared to
inclusive living.
The trauma of being involuntarily separated from one's parents, friends, and familiar
home environment creates a fundamental conviction of being unwanted and powerless, of
being an object, rather than a unique individual.
The institutional environment in itself creates additional handicaps that will mark the
person for the rest of his or her life. It is primarily the emotional and social development
that is hampered.
Emotional maturity is not dependent on the degree of disability. A person may be
relatively intelligent, but emotionally immature, while someone with severe intellectual
disabilities may be relatively mature, emotionally. The fact that a person with profound
intellectual disabilities has difficulties in expressing his or her feelings does not preclude
a developed emotional life.
The development of a normal emotional life is hampered when one is confined to a paltry
and single-sexed environment, and suffers from lack of personal life, lack of autonomy
and lack of respect for one's personal integrity.
Emotional immaturity leads to a hampered and underdeveloped identity development and
delayed sexual maturity. Furthermore, the development of language, as well as the
intellectual development, is also hampered to a greater degree than was previously
known.
(In institutions) children and youth tend to develop ways of stimulating themselves,
sometimes in self-destructive ways. Adults develop various psychiatric symptoms,
aggressiveness and depression being the most common ones, although the symptoms may
be different for people with intellectual disabilities than for non-disabled persons.
As a result of the research on the psychological effects of living in an institution, two
terms have been coined: social deprivation and taught helplessness. Together, these terms
reflect the results this research has led to.
Some institutions work better than others, but not even the best ones reach the same
qualitative levels as adequately supported inclusive groups does. The reasons for this are
that the groups who live together are small, they live in residential areas, the working
conditions for the staff are better and the residents have more contact with their relatives.
Principles for Inclusive Living
The Normalisation Principle
The overreaching idea is that children, youth, and adults with disabilities should be given
access to living conditions and everyday routines that are as similar as possible to those
of ordinary citizens.
Parents should be given support so that their children and teenagers can remain in the
home. Only under inordinate circumstances should they be given the opportunity to live
in a foster home or a pupil home.
Adults should be offered support so that they can live in a way similar to other adults or
in a group home.
This way, persons with disabilities will avoid having their personalities shaped by living
in an institution. Being part of the surrounding community will lead to new relationships
and experiences.
By living like other people one will develop a personal daily rhythm as regards getting up
in the morning, eating at regular hours, having work hours, leisure time, and bed time. In
addition, this will lead to a normal weekly routine with opportunities to participate in
cultural or other activities in one's neighbourhood, depending on one's individual
interests.
A normal living situation will ease the contact with one's parents, relatives and friends,
due to both social and geographical reasons. Having one's own apartment as part of the
group home will make it possible to have control over one's own social life.
Just as for ordinary citizens, all residents of the group home and the pupil home should
partake in daily activities-children should attend school and adults should have jobs to go
to.
Children, youth and adults should live separately. Within larger districts there may be
grounds for having special residences for young adults, as well as for older persons.
Within the frames for age divisions there should not be any divisions based on sex or
degree of disability. In reality, this means that a group home should not house more than
one person who has profound physical disabilities and is dependent on special aids for
hygiene etc.
The only groups of people who should live together because they share additional
handicaps, apart from their intellectual disabilities, are deaf people, because they need
staff who master sign language, and persons with autism, due to special treatment
programs.
In order for the individual to become socially integrated-that is, that he or she is given the
opportunity to develop relationships and participate in the community-an inclusive living
is a prerequisite. This demands support and guidance, as well as an awareness of the
amount of time it will take to reach these goals.
The situation for the staff
The work structure of the staff at institutions is more task oriented and based on routines,
than that of the staff at inclusive living facilities. This means that they are responsible for
certain tasks, for example in the kitchen, the bathroom, as regards cleaning, etc. The staff
is part of a hierarchical structure and seldom have the opportunity to develop and
improve the support themselves.
The staff at inclusive homes feel greater responsibility for the living facility, they show
more involvement, they like their work place and their work structure is focused on the
individual. Each of them is responsible for one or more residents, concerning everything
that involves these sndividuals in the home. Their input can be adapted to the needs of
each individual.
The principle of the small group
A group of people with disabilities that live together should be no larger than that they
can develop personal, lasting relationships with each other and with the staff. Because
their communicatory skills, as well as their ability to predict different reactions, are
limited, the group must be kept small.
Number of possible relationships rises dramatically with an increased size of the group.
For example, a group of four people may, besides the fact that each one can relate to one
of the other members, two can relate to one of the two remaining persons or three relate
to the fourth. Altogether, this amounts to 25 alternatives. In a group of five there are 90
such alternatives theoretically. Research and experience show that the best size is a group
consisting of approximately four persons.
A residence for a small group will blend in with the rest of the neighbourhood and the
size of the staff will be kept down. In a small group conflicts, as well as routines, will be
few and the participation in society will increase. Each individual will be given the
support he or she needs
"Persons with disabilities are members of society and have the right to remain within
their local communities. They should receive the support they need within the ordinary
structures of education, health, employment and social services." (The Standard Rules on
Equalization of Opportunities for Persons with Disabilities. UN 1993.)
From Institutions to Inclusive Homes
Some terms
Living inclusive means that one lives either with one's family, by oneself or in a
small group of people in an ordinary house that is located in a residential area.
When children and youth live together their residence is called a children's group
home and when the residents are adults their home is called a group home.
The term institution refers to one or more houses that are separated from their
surroundings, in which many people live together, divided into different units.
Institutions for persons with intellectual disabilities are called boarding schools,
residential homes or hospitals.
The situation for children and youth
As the figure shows, Sweden used to have two types of institutions for children with
intellectual disabilities: boarding schools and residential homes for children and youth.
The boarding schools were replaced with special classes at ordinary schools. This way
many children could live at home with their families, while others, who still lived far
away from their schools, were obliged to live at children's group homes located in the
same area as their schools. They were offered transportation home on Friday afternoon
and were returned to the pupil home on Monday morning.
The residential homes for children and youth could be closed gradually, as parents were
given personal and financial support, the right to free day-care and pre-school as support
from local groups of experts, so-called habilitation teams. In addition, families were
given the right to short-term relief from the care of the child (usually a few days at a time
or a week per month) or to have temporary caretakers in the home (usually a few hours
every week).
In cases when parents were unable to care for their child in the home the right to
residence in a group home for four children, placed in the ordinary community open all
the time, including weekends, was introduced.
For profoundly disabled children over the age of seven an additional right was stipulated
that gave them the right to special education in training schools run by education
authorities and transportation to and from the school.
The highest number of intellectual disabled children and youth Sweden has had in
institutional care is five thousand people. Today, we do not have any institutions. Out of
19,000 children and youth who is given special education, 1,400 live in children's group
homes and a couple of hundred in foster homes. Out of 1,500 intellectually disabled
children who are below school-age, only 40 do not live with their families.
There are, in addition, some smaller anthroposophic homes and three special schools for
children and youth with intellectual disabilities. These schools accommodate those who,
besides their intellectual disabilities, are deaf or blind or who have profound speech
handicaps, including autism.
As a result, we have today a whole new generation of disabled children and youth who
are more emotionally mature and aware, as well as a new generation of parents, who are
familiar with their children's needs and the obligations of society.
Did this process from institutions for children and youth to pupil homes take place
without any conflicts? On the whole, yes! Most of the protests came, understandably
enough, from the staff. During the initial phase, parents of children in residential homes
were sometimes sceptic as well, but they changed their minds when they saw the
advantages with pupil homes.
The county councils, who owned most of the institutions and who were responsible for
the pupil homes and the special education, accepted the new system. In the long run it
was cheaper for them and it was better for the children and their parents.
The situation for adults
The number of available care units at residential homes and special hospitals in Sweden
increased during the 1960s and 70s, so that all adults with intellectual disabilities who
wished for care could be accommodated. See figure. By the end of this period, there were
around 125 institutions, one third of which were private.
The special hospitals were closed as the need for them diminished and the residents were
transferred to residential homes. The residential homes were gradually replaced by group
homes.
The number of group homes increased during the 1970s. At this time a large number of
activity centres were opened.
Approximately one half of the number of people who moved into the group homes came
from their parents' homes and the other half came from residential homes.
Later on, those who had profound disabilities could move to group homes as well. In
1985 the parliament proclaimed that all remaining residential homes should be closed by
way of not admitting any new residents. This was a drastic, but well-founded, decision!
That same year the parliament decided that group homes should be included in the stateissued loans that were given to ordinary homes. This was given on the condition that each
person was given his or her own apartment that was no less than 40 square meters, as a
part of the group home.
This decision was very important. At last, people with disabilities were given the chance
to live like ordinary citizens! And this also included those who had very profound
handicaps.
Today, 60 percent of all adults with intellectual disabilities live in group homes, 20
percent live independently and 20 percent live with their parents.
The group homes are located in apartment buildings, row houses and single-family
houses. An alternative type of housing consists of a number of apartments close to each
other in the same apartment building, with one apartment set aside for the staff and as a
place to meet for the residents. This type of meeting place is sometimes set up for people
who live in the same neighbourhood, as well.
Every year, a considerable number of people with intellectual disabilities move from
group homes to apartments nearby, due to developments in social skills that they have
made. No one should have to be more dependent than is necessary! By moving to an
apartment nearby, the person is able to keep in touch with friends and staff.
One important advantage with the group home is the fact that it can easily be put to other
uses or sold when it is no longer needed, as opposed to an institution.
Daily activities and leisure time
The daily activities in the community or neighbourhood where the group home is situated
are necessary for those living in group homes, with their parents or alone. These daily
activities used to be limited to special activity centres, but they have been expanded with
an increasingly work-oriented establishment. As a result, intellectually disabled persons,
either in small groups or individually, take part in some type of service or production.
The loneliness that many feared would occur as a consequence of inclusive living never
became reality. However, it is necessary that staff encourage and support the individual
in choosing activities, participation in courses, etc. Naturally, those who possess limited
abilities need support in order to experience and participate in different activities. In
addition, youth leaders who organise leisure activities are necessary.
As it turns out, many people with intellectual disabilities possess great skills in making
new friends and acquaintances. It is striking, the way they are able to, and enjoy,
rambling in the community and many of them belong to different organisations or clubs.
Can any person with intellectual disabilities live in a group home?
Yes! As long as the home has been designed for disabled people, a person with extensive
needs for care can live there as well as in an institution. Problems may occur when
residents have behavioural problems, such as screaming and shouting. This will require
additional staff and has sometimes led to the placing of a group home in the countryside
where neighbours will not be disturbed.
There are a number of smaller treatment homes where adults with intellectual disabilities
may live for a limited time. No persons with intellectual disabilities live in psychiatric
hospitals or hospitals for disabled persons. Also, there are no homeless persons with
intellectual disabilities.
During the early stages, in the 70s, complaints from neighbours were fairly common
when group homes for adults were being planned. But through openness, information and
trained staff we have learned how to prevent and minimise these problems. The general
public's knowledge and experience of people with intellectual disabilities have increased
and now they are not perceived as disturbing or threatening.
Did the situation improve?
A large number of studies on how it is to live in a group home as an adult have been
done. These studies verify the advantages of this type of living compared to living in an
institution.
50-80 percent of the relatives of people with intellectual disabilities were against the
closing of the institutions. They were afraid of the prejudice their adult children would
encounter, and feared they would not be able to handle traffic, that they would be lonely,
that their new homes would be under-staffed etc. But none of these things have occurred!
In follow-up studies the number of satisfied relatives is around 80 percent.
Studies have shown that those living in inclusive homes were given care that was more
focused on the individual, that they felt safer and needed less medication. Aggressive and
self-destructive behaviour decreased drastically. Those persons who had the most severe
disabilities improved the most, in relation to their disabilities.
The staff gained more influence over their work, they had less set routines and more
freedom to take their own initiatives. However, they were also given less training and
supervision than they had previously received at the residential homes.
A Testimony
Åke Johansson lived for 32 years in a residential home for the intellectually disabled.
This is his account:
What happens to people who live like this? They become passive and to be passive
entails not knowing what is going on around them and not caring about it. You take the
day as it comes and you do not wonder why everything is the way it is. Everyone around
you behaves the same way; they all walk around in a sort of lethargy that becomes
somnambular. You do not even have to care about your own clothes. Everything is
decided for you.
Eventually this environment comes to represent safety. That which is new or different
causes fear. As a result, no one causes any problems; no one starts to shout, wanting to
leave. The will to leave is broken down; it does not exist any more. There is no room for
real life inside such walls; this is why it is not to be found there either. You do not live,
you exist.
From Åke's Book by Kristina Lundgren. 136 pages. Riks-FUB. PO 6436 S - 113 82
Stockholm, Sweden
Should Institutions be Renovated?
Because of the decrepit condition of many institutions for intellectually disabled people
in Europe, renovations or the building of new institutions are necessary. It is when this
situation occurs one should consider investing in group homes and activity centres
instead. But this kind of paradigm shift takes time! In the meantime there is much that
could, and should, be done inexpensively, at the institutions. For example:
• Divide dormitories with low walls or curtains.
• Divide the residents into small groups that have their own staff and that live and eat
together and have their own common room.
• Try to include persons of both sexes in the groups.
• Give all residents their own wardrobes by their beds and bedside lamps.
• Give everyone their own clothes and shoes so that they can get up and go outside
every day.
• Provide everyone with meaningful daily activities in locations outside those where
they live.
• Use large dining halls for something else.
• Increase the rights of individuals to decide for themselves what their day should look
like and how they should use their money and spare time.
• Increase the staff and give them more responsibility for planning the day and the week
for the residents they are responsible for.
• Give the staff increased authority to encourage contact with parents, siblings and
friends.
The End of an Era
The figure below shows the number of intellectually disabled persons living in
institutions in Sweden between 1880 and 2000. The time spent in an institution could be
anywhere from a few years to a whole lifetime. Altogether, 100 000 people are estimated
to have lived in institutions.
Sweden and Norway are the only countries that have closed their institutions for
intellectually disabled people. Denmark has closed a large number of institutions. In
Holland, however, the number has gone up. England, Wales and Scotland have closed
almost all their special hospitals. The situation in the other European countries is
unknown as statistics for the number of institutions, their size and character, is lacking. In
the 1960s institutions were being closed in the U.S.A., but this took place without any
measures being taken to provide for other types of appropriate facilities and as a result it
was rightfully criticised. The process came to a standstill.
QuickTime™ and a
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Social Entrepreneurs: A New Brand of DisabilityRights Activists
By Amanda Reid, ASHOKA
Javed Abidi had spent 18 months getting disability rights legislation to the Indian
Parliament. But with the parties at a stalemate, he only had 72 hours to get them to
cooperate. Most of his fellow activists told him it was futile. For a social entrepreneur
like Abidi, however, the impossible is merely one more obstacle to overcome.
Javed Abidi had spent a year and a half fighting to create disability rights legislation in
India, a country with at least 60 million persons with disabilities. The bill was ready to be
voted on, but on December 19, 1995, with three days left in the Parliamentary session,
the government and opposition were unwilling to cooperate. Abidi saw his goal slipping
away. He roused his fellow activists to join him in a protest. "What difference can it
make?" they asked. "It could make a difference," he responded. "Let us not go down
without a fight." The next morning a few hundred protesters with disabilities met before
Parliament. The media responded, and so did the politicians. The Persons With
Disabilities (Equal Opportunities, Protection of Rights and Full Participation) bill was
passed. "It was nothing less than a miracle," said Abidi. "India is a country where rallies
of hundreds of thousands of people are not uncommon. Here was just a handful of
people. But because they didn't stay home, it happened." They didn't stay home, of
course, because Abidi wouldn't let them. [1]
What are social entrepreneurs?
Javed Abidi represents a different brand of activist: a social entrepreneur. With
inexhaustible determination and revolutionary ideas, Abidi and others like him are
solving problems around the world. "Social entrepreneurs are not content just to give a
fish, or teach how to fish. They will not rest until they have revolutionized the fishing
industry," says Bill Drayton, founder and CEO of Ashoka: Innovators for the Public. [2]
Ashoka seeks out social entrepreneurs around the world and, after a rigorous selection
process, names the best as Ashoka Fellows.
"Social entrepreneurs have existed throughout the ages," writes journalist David
Bornstein in his new book, How to Change the World: Social Entrepreneurs and the
Power of New Ideas , published by Oxford University Press. Bornstein explains that what
is new is the scope and availability of social entrepreneurship as a vocation, and as a
global movement. His book profiles 10 innovators, tracing the influences and obstacles
that led the entrepreneur to be an agent of social change. In Javed Abidi's case, he has
drawn on the medical ignorance and employment discrimination he has experienced, as
well as inspiration from other activists.
Abidi was born with spina bifida, and incorrectly told that he did not need surgery right
away. This mistake led to nerve damage, and eventually Abidi was having trouble getting
around. Doctors told him, unnecessarily, to stay in a wheelchair. This error caused a
dangerous curvature of his spine, and cost him the ability to walk. "I am not angry or
bitter," said Abidi. "If this kind of thing has happened to me - and I am one hundred
times more privileged than the vast majority of disabled people in this country - what is
happening to hundreds of thousands of other people? The point is: This country has to
change ." After talking to disability activists in the United States, Abidi sparked a
movement to end employment and accessibility discrimination. Abidi was elected an
Ashoka Fellow in 1998, shortly after taking over the National Centre for Promotion of
Employment for Disabled People.* [3]
At least 83 Ashoka fellows involved in disability issues
Abidi, Ashoka, and How to Change the World indicate that there is a growing group of
social entrepreneurs, and that this kind of activity is particularly suited to disabilityrelated issues. Of the over 1400 Ashoka fellows worldwide, 83 work specifically on
disability-related issues, including advocacy, access, and healthcare. To name a few,
Amy Barzach creates accessible playgrounds in the U.S.**, Kevin Long trains teachers
around the world to use sign language and techniques specific to their deaf students***,
and Sonia Coutinho helps kids in Brazil with moderate learning disabilities transition to
work. [4]
Bornstein not only profiles social entrepreneurs, but points out some of their shared
characteristics. Social entrepreneurship relies on creative thinking and perseverance.
Social entrepreneurs are marked by an ability to navigate obstacles. They are tireless
advocates for their causes, constantly educating those around them. They must believe in
their own abilities, yet be willing to collaborate and ask for help. In short, they must
cultivate the traits that are common practice for those working on disability rights. Traits
like those of Erzsébet Szekeres of Hungary, who is profiled in another chapter of How to
Change the World .
Hungarian creates "new world"
Szekeres realized that her son, Tibor, who was born with both physical and mental
disabilities, would have no future if she herself did not create an environment that
included him. Starting in the early 1980s, Szekeres lobbied and applied tirelessly for
grants, permits, and contracts. In 1989 she received funding from Hungary's Ministry of
Welfare. Since then, Szekeres has created 21 living and working centers serving over 600
persons with multiple disabilities. The centers are based on one concept: total respect for
the needs, wants, and abilities of each client. While this is exemplary in any context, her
efforts are especially stark in Hungary. Jody Jensen, Ashoka's representative in Hungary,
said, "To be a social entrepreneur under a communist regime in the field of disability in
Hungary - I just find that astounding." [5]
Szekeres constantly modifies the work and living situations of her clients to meet their
interests, and to maximize their responsibilities and freedoms. In the same way, she has
never rested on her progress in disability rights, but is forever challenging her
government and society to create a better, more integrated world for people with
disabilities. And she makes this constant, large-scale progress while monitoring
seemingly small issues. One of her employees, called helpers, wrote in a daily report,
"Zoli has spent three afternoons this week watching TV, although he shouldn't be
watching so much." Szekeres responded, "If no one tells you how to spend your free
time, why do you feel you have the right to tell the disabled person how to spend his free
time? [6]
David Bornstein says that "the single most moving moment I had while writing the book"
was while he was researching Szekeres' work. In an interview for Changemakers.net,
Bornstein describes the contrast between a state-run institution and Szekeres' centers:
[The state-run institution is] the kind of place where people look like the living dead. I
met a man who was literally kept in a cage. Another was wrapped like a mummy because
he kept scratching himself. Another looked like a grasshopper -- he was skin and bones...
He was never taken outside. Nobody gave him physical therapy. It conjured up images to
me of horrible places where people have done tests on human beings.
Maybe 45 minutes later, I arrived at Erzsébet's center... Three disabled people walked
straight by me wearing jeans and t-shirts. They were having an animated conversation.
You could hear music from radio stations. I ... saw people busy at work... eating lunch in
the restaurant which looks like a pub.
It was so moving because I got a full sense of what a social entrepreneur can do. Create a
new world. These people were no less disabled than the people in the state-run institution,
but they were treated like human beings. You could understand that if this woman,
Erzsébet Szekeres, had never been born, all those people would probably be languishing
in institutions. It gave me a sense of the beauty that people can bring into the world. [7]
Szekeres says, "I tell people, 'If you really believe in something, you just have to do it
and do it , because if I had given up one month prior to 1989, I would have ended up with
nothing." [8] Similarly, if Javed Abidi had given up three days before the Indian
Parliament voted on his disability rights bill, it never would have passed.
What do Szekeres, Abidi, and other social entrepreneurs have in common? They are
accustomed to meeting daily challenges, constantly advocating for their causes,
resourceful yet willing to seek assistance. Does this sound like a disability-rights activist,
or a social entrepreneur? Both.
For more information:
How to Change the World: Social Entrepreneurs and the Power of New Ideas by David
Bornstein: www.howtochangetheworld.org
Ashoka: Innovators for the Public: www.ashoka.org
* National Centre for Promotion of Employment for Disabled People: www.ncpedp.org
** Boundless Playgrounds: www.boundlessplaygrounds.org
***Global Deaf Connection: www.deafconnection.org
[1] Bornstein, David., How to Change the World: Social Entrepreneurs and the Power of
New Ideas (New York: Oxford University Press, 2004), 219-220.
[2] Ashoka: Innovators for the Public , www.ashoka.org .
[3] Bornstein, 209-232.
[4] www.ashoka.org
[5] Bornstein, 98-104,110.
[6] Bornstein, 107.
[7] Kris Herbst, " Interview: David Bornstein 'How to Change the World'," January, 2004
(http://www.changemakers.net/journal/04january/)
[8] Bornstein, 104.
Evaluators of IDEAS Project Find Disability World
Provides Unparalleled Global Information Service
"The evaluators wish to stress the outstanding outreach and service this project has given
to the international disability and rehabilitation community. The support and approbation
received from readers, email surveys and personal interviews were overwhelmingly
positive." This was a concluding comment of The Galvin Group in its in-depth evaluation
of The IDEAS for the New Millennium project, funded by the U.S. National Institute on
Disability and Rehabilitation Research (NIDRR--#H133A990006).
The IDEAS project, consisting of three main elements – the DisabilityWorld webzine, an
allied international database of literature abstracts, and an annual symposium – is carried
out as a collaboration among four U.S. based organizations with international outreach:
the World Institute on Disability, Rehabilitation International, Independent Living
Research Utilization and the Inter-American Institute on Disability.
Now in its fifth year, the IDEAS project was due for a summative evaluation and after
reviewing several candidates, selected the Galvin Group, primarily due to the
international experience of its principals, Don Galvin, Ph.D. and Jan C. Galvin
(http://www.galvin-group.com). Their report, released on May 10, emphasized the:
• global outreach and impact of the project, involving 95 countries
• comprehensive bilingual coverage of DisabilityWorld, in effect, NIDRR’s main
outreach to the Hispanic community
• impressive scope of its 5 key topics: employment, independent living/disability rights,
accessibility, media treatment and governance
• steady growth over 5 years, producing 22 issues of DisabilityWorld, visited by 43,000
readers in March and
• reliance on leadership by disabled reporters and staff, comprising 70-80% of those
employed by the project.
The 10 point Executive Summary of the evaluation is reproduced below and the full
report is available from Jennifer Geagan: Jennifer@wid.org after July 1st. All 22 issues
of DisabilityWorld can be read in English and Spanish at the site
(http://www.disabilityworld.org) and recent issues can be downloaded in full in PDF or
Word files. The IDEAS database is also stored on the Disabilty World site.
Executive Summary
This summative evaluation of the IDEAS for the New Millennium project (sponsored by
the National Institute on Disability and Rehabilitation Research) permitted the reviewers
to reach ten major conclusions which address the value and impact of the project.
1) In borrowing a tag line from ABC's Wide World of Sports - the IDEAS project has
become the "Wide World of Disability." "Spanning the Globe" in search of the most
relevant information, the most germane developments in the field and the most rewarding
relationships.
Riding the wave of globalization, the IDEAS project was able to construct a project of
impressive scale. Readers of DisabilityWorld, for example, frequently commented that it
"provided a unique, timely and comprehensive perspective on issues facing the disability
community worldwide."
The combined resources, experience and expertise of the four partner organizations
allowed them to creatively address the needs of persons with disabilities, improve
disability and rehabilitation practice and inspire social change globally. Their global
outreach is attested to by the fact that over 95 countries were in some fashion involved in
one or more project activities.
2) Beyond the unparalleled scale of the project, its scope was most impressive. That is,
the scope of the five key topics; independent living/disability rights, employment,
accessibility, media treatment and governance, combined to address the key elements
promoting the full integration of people with disabilities into community life worldwide. Project elements, which are the webzine DisabilityWorld, the international
database, and the symposia, were orchestrated in such a way as to reinforce and amplify
the treatment of each topic.
3) One of the objectives stated in the original proposal was to create a "Disability Lexus"
(i.e., DisabilityWorld) an "international exchange of information and experience on
disability and rehabilitation to connect the disability research and advocacy leadership"
The evaluators can easily confirm that IDEAS has achieved this objective, perhaps
beyond the expectations of the IDEAS partners. As one survey respondent noted, "with
email addresses provided for all articles in webzine, people feel 'one click away' from
contact with a new source."
DisabilityWorld has become "the chronicle of record" a centralized information service
for those involved in international disability and rehabilitation work. In substantiating this
finding, the evaluators note that 22 issues of DisabilityWorld were published from March
2000 to April 2004. These 22 issues contained 2,135 pages of content, with portrayals of
93 countries including the U.S. and 6 world regions. And, most significantly, when the
most recent issue was posted in March 2004, the website, in a single month, experienced
43,000 visitors!
4) One may employ the magnet metaphor in terms of describing the project's ability to
attract a remarkable representation of the global disability/rehabilitation community.
Over 215 institutions of higher education were connected; of these, 130 were U.S.
institutions of higher education. As one respondent from Yale University emphasized,
"most importantly, it brought people together, made connections, and followed on with
contacts made. The symposia brought academia together with applied grass roots
practice. Unlike most conferences, this one gave context and a reality check to theoretical
positions."
The DisabilityWorld readership, database users and symposia participants represented
educators/researchers, people with disabilities and their families, public policy makers,
media experts, students, service providers, advocates and others. Thus, IDEAS served a
significant cross section of the U.S. and international disability/rehabilitation community
and served as an important meeting ground for individuals having a wide-range of
interests and expertise.
5) Responses to the surveys and interviews confirmed a major benefit of the project,
namely, the opportunity for personal and professional growth. U.S. respondents
emphasized that as a result of contacts with the project their interest and involvement in
international affairs had been enhanced, their horizons were broader and they had a
greater appreciation for evolving topics such as independent living/disability rights,
media treatment of disability issues, the issues facing women and children with
disabilities and the impact people with disabilities have had on policy, legislation and
service delivery.
Through the project new opportunities for new contacts in the field were created,
networking among national and international entities was stimulated and international
dialogue ignited new awareness and understanding.
6) The disability rights perspective and the full integration into society of people with
disabilities was a pervasive theme, a primary value in the selection of key issues, and a
driving force throughout the project from conceptualization through all major events and
daily practice. Involvement of and leadership by people with disabilities was evident
throughout. It is noteworthy that 70-80% of all project staff and the DisabilityWorld
reporters were persons with disabilities. Persons with disabilities also made up a
significant number of symposia participants and the readership of DisabilityWorld.
7) In the proposal, it was projected that DisabilityWorld would build gradually to provide
comprehensive coverage in Spanish, consisting of translations and original articles in
Spanish. No other webzine on disability issues existed in Spanish. By attending to their
language needs, (61.9% of all articles have been translated into Spanish) the demand
created by providing a webzine for Spanish-speaking people both within and outside the
U.S. was truly remarkable.
All partners agree that the Spanish translations, primarily conducted in Costa Rica, were
both a unique and an important achievement, very probably reflecting NIDRR's most
substantive non-English production of disability/rehabilitation information.
8) The IDEAS project effectively capitalized on the new technologies of the information
age. The use of the Internet as a tool to provide timely and accessible information in
Spanish as well as English enabled the project to attract a huge audience, many of whom
would not have known of such a resource and certainly would not have been reached
through the production of hard copies and postal services to nearly 100 countries.
We would make a personal observation here simply to note that the Galvin Group
principals were both engaged in international disability/rehabilitation information
exchange several years ago. We could never have conceived the explosive impact and
benefit the Internet would have upon such work. It is now possible to achieve what was
nearly impossible and far too costly just a few years ago.
9) The IDEAS project achieved notable innovation and had a significant impact as
regards to three topical areas, namely independent living/disability rights, media
treatment and influence of governance.
The independent living/disability rights phenomenon has become a subject of study by
social scientists as a social change model. Through the symposium on the topic and
related articles in DisabilityWorld, independent living/disability rights is now perceived
and practiced in a more culturally sensitive and respectful manner. The outcome has been
a more holistic conceptual framework no longer dominated by the U.S. approach. It is
now appreciated that the nuances of diverse countries and cultures will significantly
shape the nature, direction and development of the movement. Through various activities,
including speaking engagements, symposia discussions and 90 articles in DisabilityWorld
the IDEAS project has educated its international audience about the U.N. Convention on
the Human Rights of People with Disabilities. Indeed, as recently as March 30, 2004
Kathy Martinez, IDEAS project partner, testified on behalf of the U.N. Convention
before the U.S. Congressional Human Rights Caucus.
The Moscow media symposium was the first of its kind held in Russia, bringing together
individuals who were immersed in the mass media treatment of disability, including news
reporters and film producers as well as public educators and persons with disabilities. The
symposium produced an international "advocacy library" of juried films; stimulated an
international network of colleagues interested in pursuing continued exchange; made
possible a mini-film festival and symposium which was welcomed in six distant Russian
cities, and played a major role in the adoption of integrated public schools in Moscow. In
fact, the Russian organizer has scheduled a second invitational film festival in Moscow in
November, 2004.
The governance symposium in Durban, South Africa drew an audience of 300 people
when 60 were anticipated. The primary focus of the symposium, the impact disabled
legislators and public officials can make on public policy and legislation was literally
"discovered" by the IDEAS project. That is, they were the first to appreciate and address
this new global phenomenon. From China, England, Norway, Hong Kong to India,
Canada, Uganda and the United States we are witnessing the fact that individuals with
disabilities are being elected and appointed to high government positions; more Councils
of people with disabilities are being established and more supportive disability policies
and laws are being enacted.
As a result of the success of the December symposium, a participant from Norway
volunteered to conduct a similar session in Oslo in June 2004 to address the same
phenomenon in the European Community.
10) The project's innovative spirit, openness to change and their flexibility to address new
opportunities are exemplified by the project's reorganization of its accessibility topic. It
can be reported that the focus on this topic evolved and took a dramatically useful and
relevant direction. It is particularly noteworthy that the project was an active participant
in educating Congress to the effect that P.L. 108-199 was passed on January, 23, 2004
requiring that U.S.A.I.D. "shall seek to ensure that programs, projects and activities
administered by U.S.A.I.D. in Afghanistan comply fully with U.S.A.I.D's "Policy Paper:
Disability" (1997) and which states in part, U.S.A.I.D. "shall develop and implement
appropriate standards for access for people with disabilities for construction projects
funded by U.S.A.I.D."
In closing, the evaluators again wish to stress the outstanding outreach and service this
project has given to the international disability and rehabilitation community. The support
and approbation received from readers, email surveys and personal interviews were
overwhelmingly positive. Several recommendations were made for improvements or
changes in the future years and these can be found in the body of the report.
Japan: The Dawning of a Society for Disability Studies
Written by Jun Ishikawa, Professor, the International Relations Department, University of
Shizuoka, jointly translated by him and Japanese Society for Rehabilitation of Persons
with Disabilities
The Japan Society for Disability Studies was established in Japan on October 11, 2003,
chaired by Jun Ishikawa, a professor at the International Relations Department at
University of Shizuoka. Professor Ishikawa, who has a Ph.D. in sociology, is also a blind
person.
In Japan, disability studies were started in the late 1990s when a book entitled
"Shougaigaku e no shoutai (Invitation to Disability Studies)" co-edited by Jun Ishikawa
and Osamu Nagase was published. It received a greater-than-expected response from
academics and the disability community in Japan. Since then, people's interests in
disability studies have been rapidly growing and publications on this field have been
gradually increasing.
The turning point of the disability movement in Japan came in the 1970s, prompted by
awareness initiatives by a group of people with cerebral palsy. In this era persons with
disabilities became aware of their human rights and acquired a radical social philosophy:
in the 1980s, the Independent Living Movement came to attention; and in the 1990s, the
Deaf Culture Movement. Activities were conducted to remove transport, architectural and
information barriers, an Assistance Benefit System was launched, and efforts to establish
anti-discriminatory law began. Much attention has been devoted to the forthcoming
United Nations International Convention on the Rights of Disabled Persons.
In the meantime, a big change occurred in the academic world, sociology in particular,
during these last 20 years. Perspectives such as feminism, lesbian and gay studies,
cultural studies, post- colonialism, identity politics were presented, problems such as
racism, sexism, heterosexism came to light and issues such as mental health, assistance to
persons with disabilities, elderly care have emerged as important themes of sociology. In
social philosophy, discussions that may support disability studies such as
communitarianism, distributive justice and the theory of otherness have been attracting
attention.
First convention of Japan Society for Disability Studies
Thus, the Japan Society for Disability Studies started activities. It is hosting the first
convention of society for disability studies on June 12 and 13. Issues including social and
cultural models for disability, identity politics, labor and recognition, distribution of
resources and equality of consideration will be dealt with in the activities such as panel
discussions, dialogues and general reports.
As expected considering the activities of the society, the idea of equal access to
information for all will be valued in the convention: sign language interpreter service will
be provided for deaf participants and remote summary scribe (a new method that
combines the electronic conference system and the PC summary scribe) service will be
offered to the hearing impaired.
Sofa beds will be available for persons with schizophrenia, so that they will be able to
hear the reports while lying down and if, desired, privacy partitions will be installed.
There will be beds in a resting room, where reports can be heard through a speaker.
Reporting materials will be posted on the home page of the society, so that blind persons
can download them beforehand.
For blind participants, an escort service from the nearest station will be available.
Those already considered and those not yet considered
In his latest book, President Ishikawa writes as follows:
I would like to enlarge a little on the principle of 'equality of consideration'. There is a
stubbornly fixed idea that "there exists a majority of people who do not need
consideration, and a minority of people who need special consideration". However, the
correct view is that "there are people who have already been considered and people who
have not yet been considered". The consideration given to the majority is so much taken
for granted that it is not even seen as consideration. In contrast, consideration for
minorities becomes visible as something special.
For example, let us compare steps and slopes. Why should slopes be counted as
'consideration', while steps are not? Try taking away the steps, and the only people who
could get to the second floor would probably be rock climbers or pole-vaulters. So surely
steps are also a form of 'consideration'.
At a lecture, the lecturer is usually asked to prepare a resume or summary. Depending on
the field, it is also normal practice to show slides. Thus I always show slides using my
computer at information-related lectures. That is also consideration, and yet the audience
feels they are being short-changed if they do not get this service. On the contrary,
symposiums and lectures where summary-writers or sign-language translators are
provided for hearing-impaired people are the rare exception. The provision of Braille
resumes is just as rare.
And yet when such provision is made for disabled people at seminars and so on, the
regular audience is impressed. Theoretically, this reaction is curious, but hardly anybody
thinks it is strange. People tend to take for granted the consideration they receive to the
extent that they do not even realize it is consideration, but at the same time feel that
consideration given to other people is exceptional. They don't realize the contradiction.
Consideration provided through the market, whether it is called usability or service, is
almost certainly not worthy of the title of consideration. Consideration which is not
provided through depending on the market is provided piecemeal by the public sector,
and the rest is left to expectations of people's good will and kindness.
However it is done, it is seen as 'special' consideration. The market is a place where the
ruling mechanism is that unprincipled acts are rewarded and people who work with
conscience are ruined, but still people regard the fruits of the market mechanism as
'natural', and think that the practices of the public sector and NGOs are 'special things' or
'goodwill'. It seems very strange that many people do not question this framework, either
because they are not aware of the nature of the market or because they think it cannot be
helped.
Another thing which can be said is this. It is not just a case of "the larger the minority, the
more consideration they get, and the smaller the minority, the less consideration they
get". In the same way, it is true that "the more people are able to do, the more
consideration they get, and the less they are able to do, the less consideration they get".
Similarly, "the stronger people are, the more consideration they get, and the weaker they
are, the less consideration they get". Furthermore, it can be seen that "the stronger
people's position, the more consideration they can demand, and the weaker people's
position, the more consideration they have to provide".
Once you have grasped the view of "people who have already been considered, and
people who have not yet been considered", your sense of equality improves in a single
bound.
New Disability Point Person at the White House
The White House shares the following announcement about Tracy Justesen becoming
Associate Director for the White House Domestic Policy Council:
Tracy R. Justesen recently joined the White House staff as Associate Director for the
Domestic Policy Council. Tracy will handle the President's New Freedom Initiative and
issues important to individuals with disabilities. He comes to the White House after
serving as an Attorney in the Civil Rights Division of the Department of Justice. He
served as a technical advisor to the President's Commission on Excellence in Special
Education and as the President and Chief Executive Officer of one of the nation's premier
centers for independent living.
Tracy will return to his position as an attorney with the Department of Justice upon
completion of this assignment to the White House.
He holds a Master of Science in Education, a Juris Doctorate, and an LL.M. in
international law with a focus on civil rights issues affecting individuals with disabilities.
He also holds an Honorary Doctorate for his public service. Tracy may be reached by
email at TJustesen@opd.eop.gov.
Kenya Forum Held on African Views on UN Disability
Convention
By Phitalis Were Masakhwe
In December 2001, the General Assembly of United Nations adopted resolution 56/168,
which established an ad-hoc committee to consider proposals for an international
convention to protect and promote the rights and dignity of people with disabilities.
Additionally, a working group was appointed to collect and collate draft texts on the
same.
There is no question that people with disabilities are subjects of the international human
rights system, and entitled to full enjoyment of all human rights delineated in each of the
existing human rights instruments. Yet human rights abuses remain a daily reality of
people with disabilities around the world. This is partly because there is currently a gap
between the values expressed by the human rights system and the reality of disability. As
the 2002 report for the office of UN High Commission for Human rights stated: "The
most important argument for a convention is perhaps that of 'visibility'... it has proven
extremely difficult to keep people with disabilities in focus in the proceedings of the
(other human rights) treaty monitoring bodies. To some extent this is due to the relative
lack of engagement of the disability NGOs with the treaty monitoring machinery. And to
some extent it is due to the lack of general comments by the treaty monitoring bodies on
disability or the kind of forethought that these general comments represent".
To move the process forward, many parts of the globe have been consulting on the nature
and content of the proposed convention. Disabled people in Africa have not been left
behind in this process of reflection and dialogue. They applaud the UN system for setting
the ball rolling and request governments of the world to support this important milestone
in the history of the disabled people. Nairobi recently hosted a regional forum to reflect
and discuss the African position and inputs in the convention. The regional consultative
forum on the convention was officially opened by Kenya's Vice President, the Hon.
Moody Awori, and attended by delegates from Rwanda, Ethiopia, Uganda, Tanzania
mainland and Zanzibar, and host Kenya.
The meeting which was ably hosted by the Kenya National Commission on Human
Rights and financially sponsored by CIDA-Canada, sought to galvanize Africa's support
and perspective for the proposed convention. So what did the delegates feel should be in
the proposed convention?
Areas of consensus
There were many issues on which common agreement or consensus was arrived at. There
was equally sticky or contentious issue on which further dialogue would be necessary.
Among common issues, the participants agreed that the convention must provide a basic
definition of disability from which states can build and develop national definitions. The
definition must be comprehensive and inclusive enough to cover all forms of disabilities
(including physical, psychiatric and multiple disabilities and the fact that disability is a
social construct).
The question of data was also agreed upon as important. States should be required to
obtain and maintain desegregated data on persons with disabilities. This information is
crucial for targeted planning, policy formulation and implementation.
The delegates acknowledged that the convention should take into account the broad and
divergent needs of all UN members. However, the convention must address itself to the
unique situation of persons with disabilities in Africa. The unique issues include the fact
that disability is a development issue and should at all times be seen from that
perspective. They want a convention that will enhance their participation, widen their
choices and opportunities. It should be acknowledged that poverty is a widespread
African phenomenon, and that most persons with disabilities in Africa are the poorest of
the poor.
Delegates want a convention that will outlaw all forms of primitive, discriminative and
cultural practices as they relate to people with disabilities. They also felt that Africa is
prone to all manner of calamities, civil strife and conflicts. They therefore, want a
convention that will protect and promote the rights of people with disabilities under such
circumstances.
Both disabled persons and their parents including guardians share the burden of
disability. The recognition of parents and guardians should form an integral part of rights
of persons with disabilities and should be included in the convention.
Social stigma in Africa continues to disinherit disabled people. Africans with disabilities
feel that the right to own, inherit, use and dispose property is a fundamental right that
should be protected.
HIV/AIDS And The Disabled People
To mitigate the effects and impact of HIV/AIDS on people with disabilities, African
delegates feel that an article should be in the convention stressing the need to address its
impact on persons with disabilities.
The convention must also address the issues of dual and multiple discriminations or
marginalization. In this regard, disadvantages faced by special groups such as children
and women with disabilities, minorities including linguistic minorities, displaced persons
and refugees with disabilities, older persons with disabilities, people with disabilities
living in rural areas and urban informal settlements must get their issues uniquely
addressed by the convention.
Participants extensively discussed the vital question of responsibility. They agreed that
the states should have the primary responsibility of ensuring that persons with disabilities
get the full benefit of the rights conferred by the convention. States must allocate
adequate national resources to the fulfillment of their obligation towards persons with
disabilities. State parties should enact specific disability related legislation, develop
national policies and strategic action plans, designate national structures to oversee
implementation and put in place independent national bodies as monitoring institutions.
Regional Cooperation
The convention should recognize and promote international and regional cooperation on
disability and development. Disabled people must share the benefits of international
development assistance and co-operation. They must also be key players in development
dialogue.
Specific Rights
Disabled people in Africa want a broad and diverse range of rights enshrined in the new
constitution. They include the right to life and the lives of unborn babies; they want a
right to clothing, housing and shelter, health including primary preventive health and
early detection (including maternal care and redress for professional negligence). The
other rights include right to rehabilitation, food and water, economic and social support,
freedom of expression and access to building, public transport etc.
They also want a right to access medical facilities and legal redress affirmed. The right to
participate in the political and governance processes is equally important. And so is the
right to education and training and this has to be inclusive, integrated and specialized in
the case of career opportunities. They want the new convention to assert the right to work
and employment and access to information and communication. Africans with disabilities
want each country to develop its own sign language and promote the development of an
international and or regional sign language. They want protection from all forms of
violence, abuse and exploitation including sexual abuse and sexual harassment. They
want equal opportunities to experience their sexuality and parental rights and protection
from sterilization and forced abortion. They also want obnoxious cultural and religious
practices abolished through the convention.
Equality
The delegates want the principle of unambiguous non-discrimination and equality of
opportunities to be a crosscutting issue in the convention.
Monitoring And Implementation
They want:
 The UN system to set up institutional mechanisms to ensure implementation and
monitoring, as is the case with other human rights convention
 To have special and effective UN committees for implementation and monitoring
 The composition of the UN committees to have adequate representation of
Persons with Disabilities (PWDs), Disabled Persons Organizations (DPOs) and
parents/guardians of persons with disabilities
 To have room for shadow reporting
 To have individual complaints mechanisms
 National focal points to be established to facilitate monitoring
 To have a UN fund on people with disabilities
Affirmative Action
The convention should make provision for affirmative action.
Corporate Responsibility
To oblige states to make provisions that ensures that corporations and the private sector at
large are made responsible for non-compliance.
Contentious Issue: Tax Relief
The question of whether people with disabilities should be exempted from paying taxes
accruing from their income was contentious. But disability has an extra cost both socially
and economically. Disabled persons too however have civic duties and responsibilities to
their countries. So it was decided that tax relief on income for people with disabilities
should be decided at National level but should take into account the protection of their
dignity.
The writer is a regular commentator on disability and development can be reached on
phitalisw@amrefke.org
Norway's Support for Disability and Development
Projects
Article provided for DisabilityWorld by RI-Norway (www.ri-norway.no)
As one of only a few countries in the world, Norway has committed itself to give priority
to disability in its development cooperation. This commitment goes back almost five
years and has led to plans and guidelines for how disability issues can be followed up by
Norwegian actors in the development field. The big question now is whether all the
commitment, all the statements and the documents have actually led to real changes for
disabled people in poor countries. I will come back to this, but let us first look at what
happened to bring about the shift of focus with regards to disability.
Background
When presenting their proposal for the national budget for 1999, the Norwegian
Government stated that greater emphasis would be placed on measures for persons with
disabilities. In its budget recommendation, a unanimous Standing Committee on Foreign
Affairs stated the following: "The Committee has noted that development assistance for
persons with disabilities is to be given priority. The Committee refers in this connection
to the need for a coherent and coordinated effort, in which the rights of persons with
disabilities are included in both bilateral and multilateral assistance. The Committee
stresses the need for guidelines and an overall plan to ensure that development assistance
for persons with disabilities is in accordance with sound principles and principles of
human rights."
These statements represented an important change with regards to this issue, a change
that was largely a result of the lobbying done by Norwegian the Disabled People's
Organisations. The DPOs had argued for several years that this issue could not be left to
non-governmental organisations alone.
These statements also led to the Norwegian Plan for the Inclusion of Persons with
Disabilities in Development Cooperation, prepared by the Ministry for Foreign Affairs
(MFA) and endorsed on the 10 th of November 1999.
Plan developed
This plan is quite brief, but also quite concrete on the follow up of the MFA in its cooperation with multilateral agencies and its humanitarian aid. In addition the plan
instructs Norway's development aid agency -NORAD- to "draw up a plan for the
operationalisation and use of measures in the efforts to provide bilateral aid to persons
with disabilities. The plan will ensure that these efforts are carried out in accordance with
sound principles and principles of human rights".
The preparation of NORAD's plan of operationalisation took more than two years, but in
March 2002 the document called, "The inclusion of disability in Norwegian development
co-operation," was published. The document is divided into two parts. The first part
refers to Norwegian policy towards disabled persons, relevant international agreements
and conventions etc. In addition there is a discussion on challenges linked to development
and disability issues.
The second part contains practical guidelines for how the work can be implemented.
It is worth mentioning that the DPOs in the Atlas Alliance have been involved in the
preparation of both the MFA plan and the NORAD guidelines.
Have major changes occurred?
As mentioned above, the big question now is of course whether these tools have led to
any major changes in the practical implementation of the Norwegian development
support. So far some changes can be seen, but these are mainly linked to the support to
multilateral agencies. E.g. Norway has granted a three years disability fund to the World
Bank. Norway also supports the UNESCO flagship on inclusive education, and part of
the secretariat of this flagship is placed in Oslo. Further the MFA was very instrumental
in bringing about the Nordic Conference on Disability in Development, which took place
in November 2000.
With regards to the bilateral support the follow up is more difficult to identify. Several
parties have been concerned about this, and NORAD has therefore decided to undertake
an assessment on what is actually happening with regards to the disability issues within
their sphere of responsibility. As far as is known at present, this assessment will be
divided into two parts; on the one hand one will try to find out whether the guidelines
have been used and found useful, on the other hand one will try to get an overview of
whether disability has been mainstreamed into larger programmes supported by Norway.
DPO perspective
From the DPOs perspective, it must be admitted that any big changes within Norwegian
bilateral cooperation are not very visible. We hope we are wrong, but so far the most
encouraging factor has been the change of attitude shown by some of the important
players within this field. The process has made one thing very clear, however, and that is
the fact that the DPOs role as watchdogs will be necessary for a long, long time. There is
a tendency within development cooperation to think that there are so many good causes
and worthwhile target groups, that "we can't reach them all". To us, this is to look at the
issue of development from a distorted perspective: it is not a question of dividing the
population into different groups and to target first the one, then the next and so on. Rather
it is a question of what sort of development we would like to contribute to. If this
development aims at a just society with equal rights for all, it will have to recognise the
diversity of its population and to aim at an inclusive society without barriers.
The Unique Norwegian Telethon Campaign
Every year a rather unique event takes place in Norway. While the Norwegian Television
devotes a whole Sunday afternoon and evening to information about a specific issue and
the work of one or more organisations working with this issue, almost every house in the
country is visited by people collecting money for the same cause. In this way 4.5 million
Norwegians raise approximately 20 million USD during a few hours.
Even in advance of the specific Sunday, there is a lot of information about this year's
issue in newspapers and magazines, on radio and television.
To be the receiver of the funds raised through the telethon, the organisations have to
apply. Their application will describe the projects that will benefit from the campaign.
These projects can be both in Norway or abroad.
The Atlas Alliance was lucky enough to be given the campaign for 2002 and chose as its
theme "thesituation of disabled people in developing countries.". Actually it is the third
time disabled people's organisations have had the campaign. The first was in 1981 and
the second in 1991. In this way the DPOs have been able to raise the funds necessary to
meet NORAD's demands for cofunding. Having the campaign in 2002 gave the
organisations the opportunity to continue their development support to disabled and
people with tuberculosis for another ten years.
Public Education
It also gave the DPOs the opportunity to disseminate a lot of information about disability
issues to the Norwegian public. The main messages were that disability is a human rights
issue, that disabled belong to the poorest of the poor, and that a lot can be done through
changing attitudes and through rather simple measures. Comments in the papers after the
campaign showed that the message had got through.
Telethon results
An even more visible proof of this, was the fact that never before have so many people
volunteered to collect funds. And never before has so much money been collected by the
volunteers knocking at people's doors.
The funds raised in 2002 will be used for three main purposes; support to DPOs in poor
countries, to community based rehabilitation programmes and to the fight against
tuberculosis. None of the funds will be used in Norway, even though the organisations
could have chosen to do that. But the DPOs of Norway are of the opinion that as long as
they demand solidarity within their own country, they should also be able to show
solidarity with disabled people living under far more difficult circumstances.
CBR Service Network Pioneer Honoured by Pakistan
By N.D. Wyteman (ndwyteman@aol.com)
Mrs. Farhat Rehman, director of the Rehabilitation Centre for the Physically Disabled
(RCPD) at Peshawar, in the North-West Frontier Province, has been awarded the
National Gold Medal, one of the highest civil awards, honouring the services of
Pakistan's outstanding women.
During "Fatima Jinnah Year" (2003), Pakistan celebrated the life and work of the social
activist sister of Pakistan's founding father, Muhammad Ali Jinnah. Nominations were
received for 18 outstanding women of Pakistan in various fields, and after a lengthy
selection process the award of Fatima Jinnah National Gold Medals was made by
President Musharraf in March 2004.
Farhat Rehman, an experienced physiotherapist, staff trainer, manager and development
agent for community based rehabilitation (CBR) projects, has worked in voluntary
welfare organisations for over 20 years in Peshawar and the region, practising physical
therapy and training staff to multiply the availability of services. Working initially with
physically disabled children, Farhat later broadened her activities to adults, and to
education and vocational training with the support of her husband, Sibghat-ur-Rehman,
who is highly experienced in the special education, integration and inclusion field. Their
own NGO expanded its aims to improve disability-related provisions across the board,
with community seminars on primary health care and disability prevention, using print
and electronic media in public awareness programs on disability. [1] Many beneficiaries
have been from neighbouring Afghanistan, disabled during the turbulence of the past two
decades.
The RCPD's approach to CBR has necessarily been tailored to the strongly conservative
traditions of the majority Pakhtun population of the North-West Frontier Province, where
rural women normally observe purdah. [2] While changes in the traditional customs are a
matter for local communities to decide, the lives of disabled women and girls are an issue
to which Mrs. Rehman has given detailed attention. "They have least access to education,
skills training, income-generating activities, transport and housing", she writes. "They
also suffer from social disrespect, malnutrition, disease and ignorance, they are less likely
to get married and mothers with disabilities face social stigma, poverty and isolation."
Some RCPD training activities specifically target safety measures and household skills so
that disabled women can win the respect of their families and neighbourhood by
sustaining the roles normally expected of them. [3] One outcome in 2000 was the
formation of POWER (Promotion of Women Empowerment & Rehabilitation), a group
of women with disabilities who are pushing back the barriers and working with local
NGOs to promote the rights of all women, not only those with disabilities.
The need for coordinated efforts by voluntary organisations across the country led Farhat
Rehman and her colleagues to initiate a National Disability Network, taking advantage of
the growing use of e-mail in Pakistan during the 1990s. Partners in the Network now
number 292 NGOs, in 91 towns and cities across the country, which are responsible for
running more than 70 CBR projects with referral centres.
The characteristic response of Farhat Rehman to the national award, followed also by an
award from the Provincial government, was that these honours belonged to the whole
network of partners, donors, supporters and staff in voluntary work, who have joined
together to build a better society across the length and breadth of Pakistan.
NOTES
[1] Annual Report 2003 of the Rehabilitation Center for the Physically Disabled (RCPD).
[2] F. Rehman (2001) Rehabilitation Centre for the Physically Disabled - Sharing CBR
Experiences in a Unique Culture. http://www.daa.org.uk/e_tribune/e_2001_04.htm
[3] F. Rahman* (2001) Women with disabilities - cooking, fires and smoke. Boiling Point
No. 46: 6-8. http://www.itdg.org/html/energy/docs44/bp46rahm.pdf
*In different publications the name has been transliterated as Rehman, or as Rahman.
Rehabilitation International's position paper on the
Right to [Re]habilitation
Editor's Note: Following is a position paper of Rehabilitation International outlining why
the "Right to Rehabilitation" should be considered as one of the articles within the UN
Convention on the Rights of Disabled Persons.
Rehabilitation International's position paper on the Right to [Re]habilitation
1 Definitions
For the purpose of this paper, the following definitions are used:
Habilitation: To enable, or make able
Rehabilitation: To restore condition, operation or capacity
The defining of terms in this paper is not meant to have legal implications.
In some countries the term habilitation is used to describe the wide range of ways used to
assist in enabling persons who are born with disabilities. Their needs are often different
from the needs of people who acquire disabilities through e.g. an accident or a disease. In
this paper, the term (re)habilitation is referring to rehabilitation as well as habilitation.
2 Summary
Rehabilitation and habilitation go far beyond the health field and embraces a wide range
of issues including education, social counseling, vocational training, transportation,
accessibility and assistive technology.
The intended goal of [re]habilitation would best be amplified under a separate article
within the new UN Convention.
The UN Convention should be a "visibility" project that will both highlight the rights and
place of people with disabilities within society and "mainstream" disability into the
human rights regime.
The Ad Hoc Committee is urged to give the crafting of a separate article on the Right to
[Re]habilitation its highest consideration.
3 Commentary
For most people with disabilities, access to adequate (re)habilitation is a condition for
integration into society and participation in the communities in which they live. Without
rehabilitation many people with disabilities would be isolated from society, their
community and even their family. While (re)habilitation is often thought to include only
medical aspects, the reality is that it goes far beyond the health field and embraces a wide
range of issues.
It is crucial that the concept of (re)habilitation be separate from that of health care and
that a distinct article is devoted to (re)habilitation in the convention. Developing a
separate article does not necessarily entail the creation of new rights; it would simply
delineate a concept that is already included in existing instruments. Dedicating an article
to the issue would advance international understanding of disability and (re)habilitation
through a rights-based perspective, and would provide a clear reference point for policymaking.
This paper aims to engage in a positive discussion with all the stakeholders participating
in the negotiations, bearing in mind that we all work for the same aim: the benefit of
people with disabilities. For this reason, in this essay, alternatives are put forward, e.g.
the approach of including (re)habilitation in each and every article. However, as
explained, this exercise proves to be quite arduous and certainly not exempt from
omissions. It is our conclusion is that a stand-alone article on (re)habilitation is necessary.
Legal background
Paragraph 23 in the Definitions section of the UN Standard Rules defines [re]habilitation
as:
a process aimed at enabling persons with disabilities to reach and maintain their optimal
physical, sensory, intellectual, psychiatric and/or social functional levels, thus providing
them with the tools to change their lives towards a higher level of independence... The
rehabilitation process does not involve initial medical care. It includes a wide range of
measures and activities from more basic and general rehabilitation to goal-oriented
activities, for instance vocational rehabilitation.
The term [re]habilitation is broad in scope and employs a cross-disciplinary approach to
empowering people with disabilities. Rule 3 of the Standard Rules elaborates that the
purpose of [re]habilitation never changes faces no matter what particular service
mechanisms--vocational, educational, medical, etc.--enhance and facilitate the selfdevelopment and autonomy of persons with disabilities, calling on States to "ensure the
provision of rehabilitation services to persons with disabilities in order for them to reach
and sustain their optimum level of independence and functioning."
With this goal in mind, it is necessary to consider the best place for [re]habilitation within
the new UN treaty elaborating the rights of persons with disabilities. Thus far, members
of the Working Group have considered several approaches: placing the right to
[re]habilitation within the right to health (as is composed in Draft Article 21), placing
[re]habilitation within various rights (i.e. the right to work or the right to education) as it
applies to those rights, or placing it as a stand-alone article. This paper examines in brief
these approaches and suggests that the intended goal of [re]habilitation would best be
amplified under a separate article.
Must [Re]habilitation fall under the Right to Health?
The misconception is that a discussion of [re]habilitation belongs under the right to
health. While it is true that even the World Health Organization has adopted an expansive
definition of health, in international (and certainly domestic) legal practice,
[re]habilitation has not been isolated into a primarily health-related issue. In policy terms,
perhaps the best way to envision the purpose and starting point of [re]habilitation in the
life of a person with a disability is the place where the medical profession ends and the
process of acclimating to one's disability and maximizing one's capacity in a full range of
life activities begins.
International legal sensibilities of the right to [re]habilitation did begin with a healthbased conception, but as the understanding of disability itself has evolved from a medical
to a rights-based perspective, so has the understanding of the purpose and place of
[re]habilitation. To be sure, in General Comment No. 5 on the ICESCR, the disabled
individual's right to have access to [re]habilitation services is affirmed under paragraph
34 linked with a discussion on the right to health, but the language of the affirmation of
this distinctive right to [re]habilitation emphasizes the departure from the old conception
of [re]habilitation that was marked in Rule 3 of the Standard Rules. Rule 3 has not only
separated [re]habilitation as a stand-alone right but has refocused its goal. According to
both its definition in paragraph 23 of the Standard Rules and the language of Rule 3,
[re]habilitation should not be understood as a medical service that is guided by the
parameters of the doctor-patient relationship but as a unique tool going far beyond the
health field and consisting of a wide range of services that empower the individual,
placing the individual in control of both his/her own [re]habilitation plan but also a
shaper of national and international [re]habilitation policy.
Specific international instruments have moved us several steps forward in advancing this
more progressive comprehension of [re]habilitation--taking it, and thus disability itself,
out of the medical context and giving the issue a rights-driven focus. For instance, the
construction of Article 23.3 of the Convention on the Rights of the Child--the first
binding instrument in the UN human rights regime specifically mentioning disability-distinguishes between health care services and [re]habilitation services.
The language does not state that disabled children shall have access to "health and
[re]habilitation services" but rather elaborates that the child shall have access "to
education, training, health care services, rehabilitation services, [etc.]..." The language in
this article's subparagraph seeks to highlight [re]habilitation services as a separate system
and type of empowering mechanism in the lives of children with disabilities that should
be set apart from medical "treatment" or other such connotations. But, the language also
sets apart [re]habilitation from other linked issues such as education and vocational
training. By focusing exclusively on [re]habilitation, Rule 3 of the Standard Rules thus
brings to fruition a slow but progressive shift in the specific elaboration of rights
guaranteed to people with disabilities and in the positive perception of disability issues
that was evolving in the international community over the last few decades.
Other international and regional instruments have contributed to this de-medicalization of
the right to [re]habilitation as elaborated so well in Standard Rule 3. ILO Convention No.
159 puts the right to [re]habilitation in a purely vocational context, emphasizing those
elements of [re]habilitation policy that pertain to the right to work, creating space for
positive action measures, and stressing the need for people with disabilities to steer their
own [re]habilitation plans and for their representative organizations to have a strong hand
in setting domestic [re]habilitation policy agendas.
Key regional instruments have also given a broader scope to the right to [re]habilitation.
Perhaps the oldest regional instrument with specific reference to both disability and
recognition of the right to [re]habilitation (specified in Articles 1 and 15) as separate and
distinct from both the right to health (Article 11) and the right to vocational training and
guidance (elaborated in Articles 9 and 10), and other related services is the European
Social Charter whose Preamble proclaims that: "[d]isabled persons have the right to
vocational training, rehabilitation and resettlement, whatever the origin and nature of
their disability." The Charter's language creates space for the progressive, crossdisciplinary approach to both disability and [re]habilitation that have shifted these issues
from a purely medicalized treatment-based conception (often codified under the right to
health) to a rights-driven understanding adopted in subsequent regional and international
instruments--from the Council of Europe's own subsequent recommendations on
disability policies to the adoption of the Standard Rules and movement toward this
convention.
Thus, given these international and regional developments, linking [re]habilitation
exclusively to health now would be a step backward in advancing international
understanding of disability through a rights-based perspective--the admitted purpose of
this very convention.
Why A Separate Article? Couldn't [Re]habilitation fall under another Right?
Indeed, [re]habilitation is a broad enough issue to fall under several articles. Its
vocational emphasis suggests a natural marriage to the Right to Work article under
perhaps a special "training"-related clause. Its definitional components--i.e. specific
mention of basic skills training, assessments, guidance, and special courses--laid out in
Rule 3 of the Standard Rules suggest a linkage to the Right to Education.
[Re]habilitation's deeper purpose in the lives of people with disabilities--to provide the
tools to enhance living independently --perhaps calls for its articulation also in Draft
Article 15 on Living Independently and Being Included in the Community. After all, the
very objective of Draft Article 15--the notion that States must "take effective and
appropriate measures to enable persons with disabilities to live independently and be
fully included in the community"--cannot be achieved without State Parties ensuring the
provision of vital [re]habilitation services that will facilitate the self-empowerment and
inclusion of individuals with disabilities within society.
However, perhaps the two strongest reasons to separate out [re]habilitation into an
individual and distinct article in this historic treaty stem from the fact that [re]habilitation
encompasses so many policy issues. Setting apart [re]habilitation as its own article both
highlights its importance as a human right and provides greater clarity to what is an
extremely cross-disciplinary issue. If [re]habilitation is not mentioned separately, then
drafters will either have the burden of ensuring that it is mentioned in every article that
might have relevance to it or face the consequence of [re]habilitation being understood as
an exhaustive issue only pertaining to a limited scope of policy fields--i.e. health or work
or education--depending on where in a particular article its mention might be forgotten.
In the comprehensive study on disability within the United Nations human rights regime,
Human Rights and Disability , Gerard Quinn and Theresia Degener note the necessity of
this Convention as a "visibility" project that will both highlight to the rights and place of
people with disabilities within society and will finally "mainstream" disability into the
human rights regime.
An essential part of this "visibility" project is to recognize certain rights and policy
processes that enhance the autonomy and self-development of people with disabilities;
for people with disabilities, [re]habilitation is at the core of exercising the individual's
autonomy and maximizing participation in society and, therefore, must be a necessary
component of the "visibility" project itself.
By crafting the right to [re]habilitation as a new and separate article, we will best be able
to make visible its critical role in the lives of people with disabilities that States must
acknowledge and ensure. We will also maximize its cross-disciplinary applications in the
exercise of other important rights--i.e. the Right to Work, etc.--that will be recognized in
the Convention.
Hence, while it is acknowledged:
1. that at times [re]habilitation has been linked to the Right to Health, and;
2. that there are several (if not many) places where the right to [re]habilitation
can be codified in this Convention;
we still find that the most appropriate place for the elaboration of this right would be in a
stand-alone article. We conclude this both on the basis of the necessity to reform our own
understanding of disability, keeping pace with new social and non-medical ideologies
about disability within the human rights discourse, and on the basis of the benefits in
terms of visibility and clarity a stand-alone article would provide. The Ad Hoc
Committee is thus urged to give the crafting of a separate article on the Right to
[Re]habilitation its highest consideration.
Mariyam A. Cementwala, who is working with Professor Gerard Quinn, was the primary
contributor to this paper.
1. Standard Rules on the Equalization of Opportunities for Persons with Disabilities .
G.A. 85 th Plenary Meeting, December 20, 1993, U.N. GAOR, U.N. Doc. A/RES/48/96,
available at http://www1.umn.edu/humanrts/instree/disabilitystandards.html
2. Id.
3. Reference to any "Draft Article" and Working Group approaches in drafting, unless
otherwise indicated, come from both the proposed articles and their respective footnotes
in the Draft Comprehensive and Integral International Convention on the Protection and
Promotion of the Rights and Dignity of Persons with Disabilities , adopted by members
of the Working Group of the Ad Hoc Committee on a Comprehensive and Integral
International Convention on the Protection and Promotion of the Rights of Persons with
Disabilities in New York on January 16, 2004.
4. Quoting from the University of Minnesota Human Rights Library's website on the
WHO and the right to adequate health: "The WHO defines health as 'a state of complete
physical, mental and social well-being and not merely the absence of disease or infirmity'
( http://www.who.int/en/ )." "The Right to Adequate Health" in Human Rights Library .
University of Minnesota, n.d. available at: http://www1.umn.edu/humanrts/edumat/
studyguides/righttohealth.html#biblio2
5. For instance, in the U.S., federal [re]habilitation policy (overseen by the Rehabilitation
Services Administration) is placed under the jurisdiction of the Department of Education,
helping to underscore that [re]habilitation is a broad policy issue linked to selfdevelopment and lifelong learning, not a medical matter merely confined to health-related
policies and programs.
6. Paragraph 34 of General Comment No. 5 (ICESCR) states that:
According to the Standard Rules, "States should ensure that persons with disabilities,
particularly infants and children, are provided with the same level of medical care within
the same system as other members of society". The right to physical and mental health
also implies the right to have access to, and to benefit from, those medical and social
services - including orthopedic devices - which enable persons with disabilities to
become independent, prevent further disabilities and support their social integration.
Similarly, such persons should be provided with rehabilitation services which would
enable them "to reach and sustain their optimum level of independence and
functioning".
All such services should be provided in such a way that the persons concerned are able to
maintain full respect for their rights and dignity.
Ref. General Comment No. 5 (1994): Persons with Disabilities , U.N. ESCOR, 11 th
Sess., Supp. No. 2, at 102, U.N. Doc. E/1995/22 (1995), available at
http://www.unhchr.ch/
7. Article 23.3 of the CRC states:
Recognizing the special needs of a disabled child, assistance extended in accordance
with paragraph 2 of the present article shall be provided free of charge, whenever
possible, taking into account the financial resources of the parents or others caring for
the child, and shall be designed to ensure that the disabled child has effective access to
and receives education, training, health care services, rehabilitation services,
preparation for employment and recreation opportunities in a manner conducive to the
child's achieving the fullest possible social integration and individual development,
including his or her cultural and spiritual development
Ref. Convention on the Rights of the Child , G.A. Res. 44/25, U.N. GAOR Supp. No. 49,
at 167, U.N. Doc.
A/44/49 (1989), entered into force on September 2, 1990, available at
http://www.unhchr.ch/html/menu3/b/k2crc.htm.
8. Convention Concerning Vocational Rehabilitation and Employment of Disabled
Persons (ILO No. 159) , June 20, 1983, UNTS 1401, at 235, entered into force on June
20, 1935, available at http://www.austlii.edu.au/au/other/
dfat/treaties/1991/18.html
9. European Social Charter , October 18, 1961, UNTS 89, at 529, entered into force on
February 26, 1965, available at http://www.hrea.org/erc/Library/hrdocs/coe/socialcharter.html
10. The Council of Europe's two most recent recommendations on disability are
Recommendation 1185 on Rehabilitation Policies for Disabled (1992) [available at
http://www.hrea.org/learn/guides/disabilities.html] and Recommendation (92)6 on a
Coherent Policy for People with Disabilities (1992) [available at
http://cm.coe.int/ta/rec/1992/92r6.htm].
11. Gerard Quinn and Theresia Degener et al . "Chapter 13 - Expanding the System: The
Debate About a Disability-Specific Convention" in Human Rights and Disability: The
Current Use and Future Potential of United Nations Human Rights Instruments in the
Context of Disability. United Nations, 2002.
MDAC: Ill-treatment and Neglect of People with
Mental Disabilities in Romania
Mental Disability Advocacy Center letter of concern to Romanian Prime Minister about
systemic human rights abuses in psychiatric hospitals in Romania, as revealed by
Amnesty International
17 May 2004. MDAC today sent a letter to Romanian Prime Minister Adrien Nastase,
Mr. Paul Hunt (UN Special Rapporteur on the Right to Health), Mr. Romano Prodi
(European Commission President), Mr. Günter Verheugen (European Union
Commissioner for Enlargement), and Mr. Jonathan Scheele (Head of Delegation European Commission in Romania) to express deep concern with the protection of
human rights of people in Romania housed in psychiatric institutions.
MDAC calls upon the Romanian authorities to urgently remedy conditions that have led
to widespread deaths, ill-treatment and neglect of people with mental health problems
and intellectual disabilities in psychiatric institutions in Romania. Amnesty
International’s “Memorandum to the government concerning inpatient psychiatric
treatment” was made public on 4 May 2004. The Memorandum sets out Amnesty
International’s findings and recommendations, with which MDAC concurs.
“Amnesty’s findings suggest that Romania has much work to do in order to satisfy the
Copenhagen criteria for EU membership,” said Robert Kushen, Board Chair of MDAC.
“These criteria require that Romania protect the rights of its most vulnerable residents,
including persons with mental disabilities.”
Documentation relating to the crisis in Romanian institutions (including the Amnesty
Memorandum, the response of the Romanian government, and Romanian and English
language press coverage of the issue) is available on MDAC’s website www.mdac.info.
The Mental Disability Advocacy Center (MDAC) is an international non-governmental
organization that promotes and protects the human rights of people with mental health
problems and intellectual disabilities across Central and Eastern Europe and Central Asia.
MDAC works to improve the quality of life for people with mental disabilities through
litigation, research and international advocacy. MDAC has participatory status at the
Council of Europe and is a cooperating organization of the International Helsinki
Federation for Human Rights.
Mental Disability Advocacy Center
H-1241 Budapest, PO Box 263, Hungary
tel: (+361) 413-2730
fax: (+361) 413-2739
email: mdac@mdac.info
www.mdac.info
Mr Adrien Nastase
Prime Minister of Romania
14 May 2004
Honorable Prime Minister Nastase,
The Mental Disability Advocacy Center (MDAC) – a human rights organization
operating across central and eastern Europe and central Asia – is deeply concerned about
human rights violations against people with mental health problems and intellectual
disabilities in Romanian psychiatric hospitals. We appeal to you to urgently remedy the
crisis in the Romanian mental health system, in which thousands of human beings live a
life of abuse and neglect, in violation of international law binding on Romania.
The situation is described by Amnesty International’s Memorandum to the Romanian
government concerning inpatient psychiatric treatment – made public in Brussels on 4
May 2004. The memorandum reveals that people with mental disabilities are routinely
subjected to a wide range of human rights violations while being held in deplorable
conditions in state-run psychiatric institutions. We welcome your government’s statement
of 6 May 2004 that you will thoroughly investigate the human rights violations described
in Amnesty International’s memorandum. However, we are concerned that your response
does not adequately acknowledge the severity of the problems nor does it go far enough
to protect people from further human rights violations.
Amnesty International’s exposé shows that basic needs such as proper medical and dental
care, patient privacy, food, drink, and clothing are in short supply. Provisions of the
Romanian Law on Mental Health, which came into force in August 2002, are still not
being implemented due to the government’s failure to adopt the necessary enforcement
regulations. This stagnation of the law results in people being arbitrarily detained as their
placement is not subject to the independent and impartial reviews required by domestic
and international law.
As a Member State of both the United Nations and the Council of Europe, Romania has
already ratified the major human rights treaties, including the International Covenant on
Civil and Political Rights as well as the European Convention for the Protection of
Human Rights and Fundamental Freedoms, both of which allow no justifications for
inhuman and degrading treatment. Your government was alerted to serious human rights
concerns in psychiatric hospitals by the European Committee for the Prevention of
Torture following its visits to Romanian psychiatric establishments in September 2002
and February 2003, but there appears to have been little progress in improving the
situation of people within the Romanian psychiatric and social care system.
MDAC will ask the European Commission to closely examine Romania’s adherence to
the “Copenhagen Criteria”, laid down by the European Council in June 1993, which
stipulate that a country must have achieved “stability of institutions guaranteeing
democracy, the rule of law, human rights and respect for and protection of minorities”
before acceding to the EU. The systemic neglect and ill-treatment of persons with mental
disabilities casts doubt on the Romanian government’s commitment to achieve the
necessary criteria for EU accession.
In order to provide life opportunities and meaningful integration into society of people
with mental disabilities, progress must be made to reform the entire system, so that there
are realistic alternatives to large institutions. We draw your attention to the right to
community-based care enshrined in the United Nations “Principles for the protection of
persons with mental illness and the improvement of mental health care”, adopted by
General Assembly resolution 46/119 on 17 December 1991. Principle 7 states, “Every
patient shall have the right to be treated and cared for, as far as possible, in the
community in which he or she lives.”
In order that services meet fundamental human rights standards, MDAC reiterates
Amnesty International’s recommendations as stated in the memorandum. Particularly, we
urge your government to put in place legal regulations for the implementation of the Law
on Mental Health, ensuring that they are in line with international human rights
principles.
Sincerely,
Robert Kushen
Chair of the Board
Persons wishing to express similar concerns are urged to contact:
Prime Minister Adrien Nastase
Prime Minister of Romania
Piata Victoriei nr. 1, sector 1 , Bucuresti
Phone: +40-21-314 34 00, 230 36 60
premier@gov.ro
Mr. Paul Hunt
UN Special Rapporteur on the Right to Health
Office of the High Commissioner for Human Rights
8-14 Avenue de la Paix
1211 Geneva 10, Switzerland
Fax: +41 22 917 9010
Mr. Romano Prodi
European Commission President
European Commission
Rue de Geneva
B-1049 Brussels
Belgium
Fax: +32 2 295 8532
Mr. Günter Verheugen
European Union Commissioner for Enlargement,
Rue de la Loi 200 / Wetstraat 200
1049 Brussels
Belgium
Fax.: +32-2-298.11.99
Mr. Jonathan Scheele
Head of Delegation - Delegation of the European Commission in Romania
Information Centre of the European Commission in Romania
Address: Str. Jules Michelet Nr.18, sector 1, Bucuresti
Postal Code: 010463
Phone: +4021-20.35.400
Fax: +4021-21.28.808
Email: delegation-romania@cec.eu.int
The Disabled and the Rwanda Genocide: The untold
story
By Phitalis Were Masakhwe (phitalisw@amrefke.org)
On 7th April 2004 at Amahoro Stadium in Kigali, Rwanda, the international community
did join Rwanda to commemorate the 10 th anniversary of the Rwanda holocaust
popularly known as genocide.
As the world continues to reflect on the Rwanda genocide, many questions still linger.
Did it have to happen? What drives humanity to such extreme and intense hatred? Who is
to blame? The international community or Rwanda itself? But most important, are we
sure that the Rwanda genocide is the last the world will witness? Are their other genocide
episodes in the making, especially on the African continent? Let these questions be a
subject of another piece.
Speaker after speaker at the 10 th commemoration talked at length about what happened
and those that died. I may stand corrected, but I never heard anybody talk about what
happened to those with disabilities. What they went through before, during and after the
chilling and sickening killings. Of course the world and Africa in particular owes
something to those who were innocently slaughtered. They didn't have to die!
Regarding disabled persons, who prepared them for the impending genocide? As the
perpetrators of the mayhem schemed and conspired, did they bother to move disabled
people to secure places? Did they think about the deaf who could not hear what they were
planning...the blind who could not see ...and the physically challenged who could not run
away, as hell broke loose? How did they expect these fellows to cope! Under that state of
anarchy? By the way does anybody bother to ask these questions every time a conflict
flares up in Africa? From Sudan to Ivory Coast. From Liberia to Sierra Leone. From
Northern Uganda to DRC to Somalia. From religious conflicts in Nigeria to tribal and
politically motivated clashes that dominate the African scene. If these questions do not
make sense to us, where is our humanity, our values, and our morality? By the way what
does the so called "human rights watchdogs" have to say on this? Do they consider this as
part of their domain? Why haven't they said something about this? They stand
condemned. And their definition of human rights needs reviewing. It is exclusive.
According to Mr. Theodore Simburudali, a commissioner with the Rwanda National
Commission on Human Rights: "disabled people suffered intolerable horrors. They went
through hell on earth. They are very few disabled who survived during the genocide.
They were killed... and many maimed the more. Hundreds were abandoned".
Mr. Simburudali says that the case of the disabled demonstrates the highest degree of
human bestially, brutality and intolerance. "I think the Rwanda genocide presents a lot of
learning for Africa in particular, that indeed we can do better to prepare and protect the
disadvantaged populations in war and war related situations. The Rwandan case should
be a wake up call to all", he says.
According to the Commissioner, the Gatagara Centre for disabled persons situated 47 km
from Kigali, once a thriving centre for rehabilitation and skills training, was attacked. All
the disabled people in the centre were senselessly murdered in cold blood. The workshop
and all the equipment at the centre were looted and others destroyed. The specialised
manpower at the centre regardless of their ethnic background were butchered. As a matter
of fact, Rwanda now suffers a huge deficit in terms of well trained men and women to
support effective rehabilitation and specialised management of those with disabilities.
This centre had been developed by Missionaries.
An equally important institution that was vandalised was the Ndira Centre for people
with psychiatric and mental handicaps. The centre close to Kigali is another worse case
scenario. Watching video cassettes of the disabled persons from this centre, helplessly
looking for help during the slaughter, would leave you breathless.
This happened as the troops both foreign and local that could have helped, just watched
as if they were watching a football game. As if they were on a picnic!!
Those disabled persons who did not die suffered trauma, rape, torture and other multiple
disabilities. What is being done about this? What programmes have been put in place to
rehabilitate and integrate them in to the mainstream of society?
What support is the international community giving Rwanda in this particular case? As
the greatest victims of the genocide, how and to what extent are persons with disabilities
involved in the peace and reconciliation processes and efforts going in Rwanda? Are they
represented on the Rwandan Peace and Reconciliation Commission?
And how have these cases been handled by the traditional court systems in Rwanda, and
the Arusha-based tribunal on Rwandan genocide. Disabled persons demand and deserve
justice, fairness and an unambiguous assurance that what they went through would be a
thing of the past. Never and never again should they be subjected to such sub- human
indignity and degrading treatment...
It is time Africa and the international community respected certain protocols during
conflicts and wars. Non-combatants and especially women, refugees, children, the elderly
and the disabled must not only be spared, but protected. The United Nations and the
international community must ensure that this happens at all times and that any violation
is severely sanctioned and punished.
African charter on rights of disabled persons needed
To that end, Africa must come up with an African charter on the protection and
promotion of the rights and dignity of people with disabilities. African governments must
also strongly support ongoing efforts towards the proclamation of a similar convention by
the United Nations. But, those instruments must have watertight provisions for the
protection of the disabled in times of emergency and calamities whether natural or manmade. By the way, has anybody given thought to what happens to disabled people
especially the physically and visually impaired during perennial floods in Kenya? As we
reflect on this, lets also reflect on the root cause of the Rwanda genocide and the role of
the many and diverse players that planned and executed this horrible act. Why for
instance did the media allow itself to play that dirty damaging propaganda? What is the
role of the media in society? What about the intellectuals and politicians? I am told that
people were filled with so much venom, vengeance and hatred that even doctors would
hack their patients to death as long as the patient was against the genocide!! Doctors as
professionals are supposed to save lives. Why were they blinded with so much rage?
What about the church? Was it also compromised? Did the international community and
the United Nations do enough? Is it doing enough to prevent another Rwanda like
madness? What about Africa itself? Is it doing enough to own up to what happened in
Rwanda? Is it enough to blame the international community? How are they addressing
the question of good governance, equitable resource distribution, endemic corruption,
poverty and intolerance that systemically fuel despondency, suspicion, divisions and
hatred among the populace? And what preparatory and response mechanisms are they
putting in place to forestall and mitigate the impacts of similar events in future?
Unless these questions and issues are concretely faced and addressed, we will not have
seen the end of the Rwanda type lunacy.
The writer is a regular commentator on disability and development, can be reached on
Phitalisw@amrefke.org
Read Online Summaries of UN Disability Convention
Meetings
Daily summaries of the May-June UN Ad Hoc Meeting on the Disability Convention and
associated events are available online at www.rightsforall.org.
The 10 day third Ad Hoc Meeting took place during the last week of May and the first
week of June in New York at UN Headquarters.
The summaries were prepared as a service of Landmine Survivors Network and
translated into Spanish and Japanese by other non-governmental organizations.
Congratulations to the mostly volunteer staff: editors Zahabia Adamalay and Laura
Hershey; reporters Margaret Holt, Robin Stephens and Julia White; and production
assistant Anny Gaul. Contact: zahabia@landminesurvivors.org
World Blind Union position on International
Classification of Functioning
This paper has been prepared on behalf of the WBU by William Rowland of South
Africa, Vice President
ICF belongs to the family of classifications developed by the World Health Organization
for application to various aspects of health. It classifies functioning and disability as
associated with health conditions and is complementary to the International Classification
of Diseases (ICD). It applies to all people and not only to people with disabilities, which
is a widely held misconception. In other words, its application is universal.
History
In 1980 the World Health Organization first published an International Classification of
Impairments, Disabilities, and Handicaps (ICIDH). ICF represents a revision of that text.
During the drafting stages and field trials the document was entitled ICIDH-2:
International Classification of Functioning and Disability, for historical reasons. In the
final version, however, this has been changed to International Classification of
Functioning. This is the version adopted by the World Health Assembly in May 2001.
Aims
The aims of ICF can be summarised as follows:
 to provide a scientific basis for understanding functional states associated with
health conditions;
 to permit comparison of data across countries, health care disciplines, services,
and time: and
 to provide a systematic coding scheme for health information systems.
Dimensions
ICF has three dimensions: body function and structure, activity, and participation.
Contextual factors are an integral component of the classification and consist of
Environmental Factors (external) and Personal Factors (internal).
The term "dimension" refers to levels of functioning. The dimensions are conceived as
having two poles: At the one end they can be used to indicate problems (e.g. impairment,
activity limitation or participation restriction); at the other end they can indicate nonproblematic (i.e. neutral and positive) aspects of functioning. "Functioning" is used as an
umbrella term for the positive or neutral aspects of dimensions at body, individual or
society level. "Disability" is used as an umbrella term for the problems in these
dimensions.
Models
Here the term "model" is used in the sense of a construct or paradigm. Various
conceptual models have been proposed to understand disability and functioning. These
may be expressed in a dialectic of "medical model" versus "social model".
The medical model views disability as a personal problem directly caused by disease,
trauma or other health conditions. What is required is medical care by professionals.
The social model of disability, on the other hand, considers the problem to be socially
created. The response has to be social action to achieve the full integration of individuals
into society.
Now the ICF proposes a synthesis of these two models, advocating a so-called
"biopsychosocial" approach. It seeks to provide a coherent view of different dimensions
of health at the biological, personal, and societal levels.
Levels
ICF exists in two versions, long and short. In the long version there are four levels of
classification, which in the short version are reduced to two levels, these being our focus
here.
Remembering that there are three dimensions - body function and structure, activity, and
participation - a one-level classification indicates, for example, that there is a sensory
problem, say, of seeing or hearing, and that this causes certain activity limitations (in
moving around, for example), and participation restrictions (in employment, for
instance).
A two-level classification indicates the extent of the problem, expressing it in the form of
an alphanumeric code. In addition, environmental factors can be similarly coded. This
coding of dimensions and components can also be positive, for example, where the
environment is accessible.
Uses
Various examples are given of the use of the classification since the publication of the
first version in 1980. I give below the three most obvious uses:
• as a statistical tool;
• as a research tool; and
• as a social policy tool.
WBU Viewpoints
I suggest that the WBU adopt the following viewpoints in relation to the ICF:
• that there is a need for an international classification relating to disability and health
conditions;
• that the existing classification (the ICF) is overdependent on professionals and
overreliant on unconstrained budgets, which is a serious disadvantage in developing
countries;
• that the World Health Organization be encouraged to resource a training programme
enabling developing countries to make more effective use of the ICF;
• that while the current classification has some merit and usefulness, the WBU cannot
endorse any instrument in the development of which it was not consulted;
• that, despite its reservations, the WBU will maintain an interest in the existing
classification because of the need to monitor any enterprise where blind people are
classified or made the subject of data collection;
• that while the relevance of a medical paradigm is acknowledged in the health sector,
the WBU chooses to apply a human rights paradigm in its own programmes, policies,
and advocacy work; and
• that any classification conceptualising disability as problematic detracts from the
image of disabled people and that, therefore, there is a need to develop an alternative
classification in partnership between the World Health Organization and the
international disability rights movement. A classification rating human potential
presents itself as one such possibility.
Author's Note
In this short paper I have tried to reduce eight braille volumes of highly technical material
to an understandable description of the ICF. Nevertheless, the retention of some technical
terms has been unavoidable, while the complexity of the ICF remains more than
apparent.
Cross-reference
Other information relevant to the measurement of disability is given in the WBU position
paper entitled Definition of Blindness.
World Health Organization's Disability Unit Requests
Support
By Khasnabis Chapal
I am the new member of Disability and Rehabilitation Team of WHO. My major areas of
work are CBR and Assistive Devices. Beside these, I also have been asked to upgrade our
existing website (http://www.who.int/ncd/disability/index.htm).
We need your feedback and active participation while developing the upgraded website.
We would be very happy if you could please let us know what is your minimum
expectation from WHO Disability and Rehabilitation Website. Could you help us with
ideas, success stories, facts and figures, good photos etc. Photos talks more than any text
and it has its own language which most of us understand. Once it is developed, we will
also try to make it in other languages and DISABILITY friendly. You can send the photo
by post or electronic mail - we will duly acknowledge your contribution as much as
possible. We also need the same for our brochure and awareness material - Could you
help?
Please keep in mind that we are a very small team and this job is an addition to our
regular work till we could come out with better solution. So, we might not be able to
match with all your expectations. We will give a honest try and we will try very hard to
make a good quality useful website but to do that we need information and resources. We
will also be happy if you allow us to link your website to ours and vice versa. Please
share this message with anyone you know who can help us.
Khasnabis Chapal
Technical Officer
Disability And Rehabilitation (DAR) Team
World Health Organization
Room No. 6114, 6th Floor
20, Avenue Appia, CH-1211 Geneva 27, Switzerland
Tel: (+41 22) 7913499
Mobile: +41792493545
Fax: (+41 22) 7914874
Email: khasnabisc@who.int
Prosthetics/Orthotics Training Course to be held in
India
Announcing the deadline (this week) for applications to the one year training courses in
Prosthetics, Orthotics and Community Therapy at MIRRTC, Bangalore, India starting on
5th July 2004.
The Jaipur Limb Campaign is delighted to announce that our partners Mobility India in
Bangalore are inviting applicants for their third annual training programme, which has
been developed with support from JLC.
These courses are ideal for building the skills and capacities of staff and volunteers at
partner organisations in developing countries. The courses are affordable and cover
appropriate technologies and skills for use in real situations. Aimed at people who have a
broad basic education ( to 12th grade) and a real interest and aptitude for work in
rehabilitation workshops and community based rehabilitation programmes, the year long
programmes cover:
• primary health care,
• self-development and communication skills,
• counselling,
• bio-mechanics,
• documentation and organisation,
• computer applications,
• human anatomy,
• workshop management,
• materials and applied rehabilitation in prosthetics, orthotics or community therapy.
Training in classrooms and Mobility India's purpose -built workshops is complemented
by practical placements in the field with MI's local partners in Bangalore and further
afield in India.
The programme offers an excellent opportunity for trainees from many different
countries to encounter up to date technologies for prosthetics and orthotics and it gives
them a unique chance to learn and work together in an enthusiastic community.
Jaipur Limb Campaign has sponsored trainees from our partner organisations from
Angola, Mozambique, Bangladesh, Ethiopia, Nepal and Sri Lanka as well as elsewhere in
India. All have found the courses of great benefit.
Costs
Training fees and accommodation for the whole year are 60,000 Indian Rupees for local
organisations and 120,000 Rupees for candidates from overseas. In addition there are
local insurance, food, subsistence and training materials costs totalling approximately
42,000 R plus the cost of visa and travel to Bangalore.
Language
The language of instruction is English. Some language assistance may be provided on
site, but candidates are advised to have intensive language coaching in advance if
necessary.
Further details are available from Ritu Ghosh, Assistant Technical Director, at Mobility
India: email Ritu@mobility-india.org
Postal address: 1st and 1st'A' Cross, 2nd Phase, JP Nagar, Bangalore, 560 079, India tel
+91 80 2649222
Disability Studies Quarterly Call for Papers: Special
Issue on Technology & Disability
Guest Editors: Gerard Goggin, PhD, University of Queensland and Christopher Newell,
PhD, University of Tasmania
An electronic journal focusing on disability studies research
Disability Studies Quarterly is a refereed online publication of the Society for Disability
Studies (SDS). The 24-year-old journal has established a multidisciplinary and
international forum for social scientists, scholars in the humanities, disability rights
advocates, creative writers, and others concerned with the issues of people with
disabilities. It is published four times per year at www.dsq-sds.org.
Scope: Authors are invited to submit scholarly papers based on original research for peer
review, as well as research in progress, pilot studies, and commentaries/essays. DSQ also
accepts submissions of disability-oriented fiction, poetry, and review of books, films,
videos, and theatre. DSQ represents the full range of methods, epistemologies,
perspectives, and content that comprises multidisciplinary disability studies. DSQ is
committed to developing theoretical and practical knowledge about disability, and to
promoting full and equal participation of persons with disabilities in society.
Special Theme issue on Technology & Disability
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 conceived, experienced,
and framed in society.
A wide range of technologies are adopted, consumed, and used by people with
disabilities in unexpected and innovative ways. There are many contests over the
meaning and implications of technology, as, for instance, in the case of the ‘bionic ear’.
There are also specific cultural and social codings of technology/disability that remain
little recognized and examined, and political and economic discourses that have been
little studied. For instance, disability is often invoked as a warrant for development of
new technologies, from biotechnology to information and communication technologies,
and ‘smart homes’ — yet these technologies often create new forms of exclusion for
people with disabilities.
In this special issue of Disability Studies Quarterly, we wish to provide a timely,
interdisciplinary reconsideration of the connections between technology and disability.
Rather than providing publicity, news, or reviews of new technologies or equipment, the
issue seeks to investigate the deeper yet still neglected social, cultural, and disability
rights aspects of technology and people with disabilities.
In this light, we welcome submissions on topics such as (but not restricted to):
• histories of disability and technology
• case studies and re-examinations of ‘classic’ disability technologies, such as the
wheelchair, prosthesis, hearing aid, and so on
• case studies of ‘new’ technologies, including digital technologies, communication and
media technologies, biotechnologies, ‘smart home’, medical technologies, and
cochlear implant
• theoretical investigations regarding disability and technology (for instance: how do
theories of technology/disability interact with other theories of technology, whether
Heideggerian, social shaping of technology, materialist, actor-network theory,
feminist, and so on)
• analyses of technology policy and practice
• studies of disability and technology design.
To submit papers:
Potential contributors are encouraged to familiarize themselves with previous issues of
Disability Studies Quarterly (DSQ), and to discuss their ideas with the Guest Editors.
Gerard Goggin, PhD, Centre for Critical and Cultural Studies, University of Queensland,
Australia.
Email: g.goggin@mailbox.uq.edu.au
OR
Christopher Newell, PhD, School of Medicine, University of Tasmania, Australia.
Email: Christopher.Newell@utas.edu.au
If you would like to submit a paper to the journal, please prepare your manuscript in
accordance with the DSQ style guide, and send an electronic copy of manuscript to the
guest editors at the above addresses.
To submit papers on disk, mail to:
Christopher Newell, PhD,
Medical Education Unit
School of Medicine,
University of Tasmania,
Private Bag 99,
Hobart, Tasmania,7001,
Australia.
Submission deadline: 1 December 2004
Call for Papers: Regional Seminar on Childhood
Disability, Dhaka
Second Regional Seminar On Childhood Disability
Theme
Creating Barrier Free Inclusive Community and Rights Based Society for Children and
Persons with Disability"
Date
December 3, 4, 5, 2004
Place
Dhaka, Bangladesh
Participants
Parents, developmental pediatricians, child neurologists, child psychiatrists, special
educators, developmental therapists, physiotherapists, occupational therapists, speech and
language therapists, pathologists, social workers, counselors, community workers,
representatives from Government and private sectors, NGO personnel, media personnel,
IT professionals, UN agencies, and people working in the fields of childhood disability.
Papers are invited under the following categories of childhood disabilities:
• Early Detection
• Hearing Impairment
• Inclusive Health
• Prevention and screening
• Autism Spectrum Disorders
• Child Protection and Counseling
• Early Intervention
• Behavior Problems
• Non discrimination
• Education, Training
• Epilepsy
• Laws and Legal Rights
• Special Education
• Learning difficulties
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Policy and its Implementation
Inclusive Education
Families of the Disabled
Children's voice
Early Child Development
Intellectual Disability
Employment and Job opportunities
Accessibility
Cerebral Palsy
Visual Impairment
Community Based Rehabilitation
Primary Health Care
Media Information and Communication Technology
Low Vision
Dietary factors and nutrition
Disability Economics
Last date for receiving abstracts (with 200 words): 30th June, 2004
Last date for registration: 30th August, 2004
Joint Organizers
Bangladesh Protibondhi Foundation (BPF)
Foundation for the Developmentally Disabled
Shishu Bikash Network (SBN)
Child Development Network
Contact person correspondence:
Dr. Shamim Ferdous
Organizing Secretary
Second Regional Seminar on Childhood Disability
Bangladesh Protibondhi Foundation
12, New Circular Road,
West Mailbag, Dhaka-1217, Bangladesh
Phone: 880-2-9351625, 8856749, 9356568
Email: bpf@bangla.net, bpfkalm@bangla.net, bpfkal@bangla.net
Call for Papers: Special Issue of Radical History Review
on "Disability and History"
Radical History Review seeks contributions to a special issue on the topic of "Disability
and History." While most Americans are aware of the passage of the 1990 Americans
with Disabilities Act (ADA), it was not until 1973 that any anti-discrimination national
law existed as regards disabled Americans and then it was contained in a single sentence,
"Section 504" of the Rehabilitation Act of 1973 (twice vetoed by then President Richard
Nixon before its eventual passage). If the 1990 ADA was a milestone in the history of
disability rights, it did not come about without a long history of struggle. The modern
history of disability rights has paralleled the movement for civil rights, gender equality,
protections for sexual orientation, the environmental movement and many other aspects
of the post-1960 struggle for political change. It has, however, received less attention
among radical historians, especially in the global context.
RHR seeks contributions on all aspects of disability and history. Contributions might
include, but are not isolated to, articles on the following topics: intersections of race,
gender, queerness and disability; changes in family structures, childhood, education; all
forms of artistic expression; the history of special education; the effects of the ADA;
issues of law and sexuality with regard to disabled individuals and communities;
alternative histories of disability activism; histories of paternalism toward the disabled vs.
the struggle for equal rights and autonomy; architectural controversies over accessibility
vs. historic preservation; representation of disabilities in the ideological constructs of
empire-building; connections between disability and national and international political
struggles; and social constructions of disability, in non-Western histories and
communities.
These are only suggestions and we encourage contributions on the widest range of topics
related to history, disability/ability. Submissions are not restricted to traditional research
articles. We welcome short reports and reflections, documents, photo essays, art and
illustrations, interviews with activists or intellectuals, teaching resources including syllabi
for courses, original documents, exhibit and book reviews. RHR solicits contributions
from activists and academics. Deadline for submissions: Jan. 15, 2005.
Send to:
Disability and History
Radical History Review
Tamiment Library, NYU
70 Washington Square South, 10th Fl.
New York, NY 10012
Email: rhr@igc.org
Essays should be submitted electronically, as an attachment, with "Issue 94 submission"
in the subject line. For artwork, please submit 3 copies by mail. For preliminary e-mail
inquires, please include "Issue 94" in the subject line.
Independent Living
Preserving the Disabled People's Movement
Greater Manchester Coalition of Disabled People (GMCDP) has successfully attracted
funding for a 12 month project from the Heritage Lottery Fund. GMCDP is an
organisation controlled by disabled people and seeks to demonstrate and promote good
practice in everything it does. In September 2002, GMCDP conducted a detailed
reappraisal of its aims, objectives, role, function, priorities and plans. The creation of an
archive which properly records the history and ongoing development of the disabled
people's movement emerged as a high priority for the organisation. Similarly, in a recent
survey of the staff of the British Council of Disabled People, the urgent need to collate
and promote the history of the disabled people's movement was identified by them as a
key initiative which the organisation should take forward.
The 12 month project entitled "Disabled People's Archive and History Project" will be
undertaken by Brian Kokoruwe - The Project Manager, who will;
• Map the task of identifying and collating the history of the disabled people's
movement
• Draw up a timetable and scheme to start and continue the planned, consistent and
systematic collection of fresh data and existing material
• Identify a suitable, accessible site and venue to host the substantial and diverse range
of material and artefacts to be retained in this archive
• Develop and implement detailed funding applications and proposals for a sustainable
archive through which this valuable heritage can be shared
Project Manager Brian Kokoruwe commented "This is an exciting and challenging
project. It is a unique project that charts our history; which is cross-impairment and
which uses the social model of disability. This is a unique project because it is being
pioneered by an organisation of disabled people. In our view, it is very important that we
record and chart our own history". Brian started work on this project from 1st April 2004.
GMCDP welcomes support, co-operation and assistance from professional archivists,
disabled people's organisations and individual disabled and non disabled people across
the UK who may possess archive materials and useful information about the history of
the disabled people's movement. If you want to contribute any useful materials or you
would like to share your experiences of the movement, please contact:
Greater Manchester Coalition of Disabled People
Disabled People's Archive and History Project
Brian Kokoruwe
Project Manager
BEVC, Aked Close,
Ardwick
Manchester M12 4AN
Email: brian@gmcdp.com
Fax: 0161 273 4164
Community Support for Adults with Autism in Japan:
The Example of Keyaki-no-Sato
By Yoshiko Abe, Executive Director, Welfare Corporation Keyaki-no-Sato
Inception
In 1985, the Welfare Corporation Keyaki-no-Sato was established at Kawagoe City in
Saitama Prefecture 35 kilometers northwest of Tokyo. It was only the second such
facility in Japan to specialize in caring for adults with autism. Founders of the
corporation included Mrs. Hatsue Suda and 21 other parents of children with autism. Mrs.
Suda is the current President of Keyaki-no-Sato and Vice President of the Autism Society
of Japan. The first "Hatsukari-no-ie" (Hatsukari Home) was opened in 1985 to serve 50
persons with autism . Today, the organization has grown to include 8 facilities ranging
from a "welfare" factory, a sheltered workshop , 4 group homes and the Saitama Support
Centre for Persons with Autism and Developmental Disabilities. At present 90% of the
95 adults who are supported in these facilities have been diagnosed with autism.
Despite the great need for support services for adults with autism who face challenges in
daily living, it took 7 years to incorporate Keyaki-no-Sato. The founders faced strong
opposition from the local community. People were concerned that the proposed activities
of Keyaki-no-Sato would jeopardize the area and decrease land values. The opposition
movement received extensive coverage from the mass media. As a result, the local
community and Japanese society at large had the opportunity to confront attitudes about
disability and come to terms with the rights of people with disabilities.
Principles, Activities and Development of Keyaki-no-Sato
The following principles guide the service providers in their aim to support adults with
autism in the community:
1.
Ensure that persons with autism live with human dignity, a sense of responsibility and
with the opportunity to experience a range of life experiences.
2.
Explore ways to support independent living in the local community, regardless of the
severity of the disability.
3.
View work as a core activity to promote participation in the community.
4.
Promote the value of "independence as a group" in a way that persons with milder
impairments help those with more severe impairments to work, cooperate and attain a
measure of independence.
Support workers at Keyaki-no-Sato have been applying the principles successfully since
Hatsukari-no-ie was opened in 1985. The original group of 6 or 7 adults with autism and
2 to 3 support staff found work cleaning markets, loading soft drinks in machines at
factories, separating empty cans from other scrap metal at recycling companies, making
miniature trains and making wooden carriers at a pallet manufacturing company.
Keyaki-no-Sato's innovative model of job coaching was in operation one year prior to the
similar system established in the United States. The model enabled members of the
community to understand autism while adults with autism learned the social rules of the
workplace and pride in their activities. Encouraged by improved relations between the
community and adults with autism in the workplace, Keyaki-no-Sato expanded in 1990 to
include a "welfare" factory (a Japanese term for securing minimum wage for the work of
persons with disabilities) and a group-home. The organization has continued to grow with
the opening of a sheltered workshop, three group homes and a support center.
Taro's Development: A Mother's Retrospective
My son, Taro, is a 41 year old man with a severe form of autism. With the support of
Keyaki-no-Sato he has lived "independent as a group" in his association with a welfare
factory/group home. Being part of this group has meant sharing work and living
arrangements with others who have varying levels of intellectual impairment. Typically,
persons with autism experience great difficulty developing partnerships with others, but
Taro and his group have made strides far beyond our expectations.
Taro was born in 1962. There was no compulsory education for children with disabilities
in Japan until 1979, so Taro received only 2 years of formal schooling from ages 8 to 10.
As a young child, Taro had difficulty controlling his behaviour. Whenever he became
frustrated, he would jump up and down and slap his own cheeks or bite other people. He
had sleep problems, an unbalanced diet as he could eat only certain foods (e.g., one type
of bread from a particular bakery), and a strong interest in only certain things like putting
his hand under running water in the house. He liked to wander around and he had great
difficulty joining groups or following instruction. By the age of 10 the serious
behavioural problems all but disappeared. As a result of our persistent efforts as a family,
Taro was able to do simple household chores such as washing dishes, helping with simple
cooking and wiping the floor. However, he could not take any simple action without
instruction outside our home.
Taro began visiting Hatsukari-no-ie when he was 20 years old. The staff in charge
understood his disability and so they were eager and very capable of teaching him.
Gradually, Taro began to make his own decisions and become active in his daily life and
in a workplace. At the same time, his communication skills and his relationships with
others improved dramatically. In addition, the principle of "independence as a group"
influenced his development a great deal. In the context of the small group at the grouphome, with the stimulation and support of colleagues, Taro began to understand more and
more and he progressed more rapidly than we expected.
Taro works at a factory where pallets are manufactured. Taro and others work in pairs,
though the pairs change each day. Taro used to find change very difficult to cope with,
but the rotational system has fostered good human relationships and mutual cooperation.
For safety reasons and given my son's cognitive disability, Taro does not actually make
pallets at the factory. What he is able to do is to pull out nails from lumber, carry the
lumber with his partner to a cutting machine, carry the cut lumber from the machine, and
help print the company's name on the finished products. In keeping with Keyaki-noSato's principle of independence as a group, all the staff and colleagues know that "the
President's son, Hiroshi, can make pallets because Taro carries lumber." In this way, Taro
feels that his job is important. He says, "This is my job" and he works proudly and in
harmony with his partners.
My son has also shown a remarkable improvement in his daily life. He no longer wanders
around aimlessly. He now listens to his favorite music CDs of Mozart, Schubert and the
Vienna Boys' Choir and he finds pleasure in swimming, putting golf balls and getting
along with his colleagues. He participates in an annual trip organized by the residential
facilities at Keyaki-no-Sato, which involves an overnight stay at a resort or hot spring spa
and sightseeing. Taro regularly takes an active part in a Karaoke group when he is off
work and he likes singing and dancing.
Professor Masataka Ohta of Tokyo Gakugei University is an authority on autism and the
doctor in charge of Keyaki-no-Sato. He is surprised by Taro's marked improvement. Dr.
Ohta describes the growth of people in Keyaki-no-Sato--especially those who work at the
welfare factory--as an example of the successful "structuring of minds." According to the
professor, "the staff of Keyaki-no-Sato do their best to understand the particular condition
of each person with autism, highlight the working progress of each, and patiently
continue supporting each one" and this has lead to a structuring of minds.
The President of Keyaki-no-Sata told us:
I believe that above all the parents' love for Taro has helped him develop and grow so
much. Some say that people with autism cannot build human relationships at all, but I
disagree, as I see them working in harmony and getting along with each other at the
welfare factory. I suppose that they just didn't know how to do it before, because people
around them had not taught them or had not supported them. Although people with
autism are said to have communication disabilities, even if they cannot talk, they have
their own ways of communicating their minds to one another. I believe they will continue
to develop as long as they are supported properly and provided with an appropriate
environment. Therefore, we should never give up.
Prospects and Activities for the Future
The well-documented behavioural characteristics of persons with autism make this
condition one of the most challenging to serve with educational and in social supports. As
few supports for adults with autism are available, many individuals continue to suffer in
conditions that have not been tailored to optimize functioning and enjoyment of life. The
activities of Keyaki-no-Sato provide an example of how to create an environment where
a person's disability is properly understood and supported. Even the most severely
affected persons with autism in the Keyaki-no-Sato program are able to develop and live
independently in the local community.
The Corporation also has consulting and support projects that are expanding. Both are
provided mainly by an Information and Communications Technology (ICT) group that
provides information or advice to families and professionals who care for or work with a
person with autism. Communications are electronic using email. Some people with
autism are very good at operating machines and many enjoy the activities suggested by
ICT during leisure time. To expand the skill set of adults with autism, ICT has been
providing training with a variety of pieces of equipment and developing teaching
materials to enhance communication. As a way of acknowledging ICT's important role in
promoting use of new technologies to support the quality of life of persons with autism, a
joint research project with the Kentucky Autism Training Center at the University of
Louisville in the United States is also under consideration.
Lastly, we are now working on the "Keyaki system," which provides comprehensive
lifelong support for persons with autism. Above all, we strongly hope that we can help
people with autism live a happy life by delivering and sharing information about this
system through ICT.
"Reality is Mud" - Native American Forum on
Disability Issues
By Jeannette Drake (lcswpoet@yahoo.com)
Native Americans concerned with disability issues gathered on April 15, 2004 at the
Hyatt-Regency Tamaya Resort and Spa on the Santa Ana Pueblo near Albuquerque, New
Mexico for a public forum on "Disability Matters in Tribal Communities." The four-hour
forum, designed to address concerns of American Indians and Alaskan Natives with
disabilities, was scheduled as the final event of the National Council on Disability's
quarterly meeting that began on April 13, 2004. NCD is an independent agency that
proposed and drafted the Americans with Disabilities Act of 1990 and is composed of 15
members appointed by the President of the United States and confirmed by the U.S.
Senate. The agency is charged with promoting policy, programs, practices and procedures
that guarantee equal opportunity for all persons with disabilities regardless of the nature
or severity of the disability, and to empower them to achieve economic self-sufficiency,
independent living and inclusion and integration into all aspects of society.
Treva M. Roanhorse, a member of the Navajo Nation and President of the Consortia of
Administrators for Native American Rehabilitation (CANAR) from Window Rock,
Arizona gave greetings and an overview of the myriad of current issues facing American
Indians and Alaskan Natives with disabilities. These issues include the need to advocate
for services near the reservation, to push for cooperative agreements with state agencies,
to guarantee that tribes receive continuation of vocational rehabilitation funding without
having to apply every five years, and to develop business plans for self-employment.
Roanhorse also emphasized the critical need for continued professional development and
childhood prevention and intervention programs.
A statement of the forum's purpose, that is, to "lift every voice" and to create dialogue to
insure that members of the National Council on Disability hear authentic perspectives"
constituted a charge to the audience by Council Member Milton Aponte. A public
comment period and group discussions on health care, independent living, educational
and vocational rehabilitation brought forth a multiplicity of voices and a range of genuine
emotions and perspectives.
Increase exposure to independent living
Joseph Ray, of Zuni descent and a member of Laguna/Acomo Pueblo, dreams of one day
owning a gallery in Washington D.C. He shared elements of his personal story related to
paralysis that resulted from a car accident. Up to age 24 he engaged in learned selfdestructive behaviors. "Becoming paralyzed saved my life," Ray angrily revealed. He
passionately decried federal defense spending and expressed the need for a National
Council on Disability commitment to programs that will address social issues on a deeper
level. Ray believes it is important to educate tribal members to better understand the
concept of independent living. Self-esteem issues and discrimination against those in
wheelchairs warrant attention as well. He called for council members to hold a public
forum in his community in order to truly obtain a grassroots perspective. "Reality is mud;
reality is falling to the ground..." Ray exhorted.
Demand for services in rural communities
Improved road conditions, access to services and transportation issues plague many tribal
communities. Orie Medicinebull, a Western Monche single mother whose Northern
Cheyenne husband, Morris Medicinebull, died in 1993, lives in the rural community of
Auberry in central California. She says, "more money is needed to help children stay and
receive services near their families."
Her 17 year old daughter, Precious Sunset, was diagnosed at birth with Monosomy 9 P, a
rare chromosome anomaly and has heart, kidney and other health complications.
Although Precious Sunset lives where her great-great-grandfather worshiped and prayed,
she must travel an hour to a health center in Clovis for general healthcare and three hours
to the Shriner's hospital in Sacramento to receive services for scoliosis. Precious Sunset
maintains a pleasant, positive attitude, her mother says. Still, with scoliosis, "riding is not
easy."
Medicinebull believes that public forums such as this one offer opportunity for important
dialogue. However the forum needs to be scheduled for at least one day or held in
different regions to make them more accessible. Additionally, Medicinebull believes it
would be helpful if the National Council on Disability gave some attention to dispelling
stereotypical and negative images of First Americans. She points out that statistical data
which reports smaller numbers of American Indians in comparison with other groups
allows the general public to conclude that the needs for special services are small, when
in fact, the opposite is true. "The need is great."
In her own life Medicinebull emphasizes the importance of prayer and a lot of advocacy.
She serves on the board of directors for a statewide agency, Protection and Advocacy,
Inc., and was appointed by Senator John L. Burton.
Desire for independence
In the health care and independent living discussion group, Christopher Luther, a member
of Laguna Pueblo whose disability began in 1975, also echoes the difficulty of obtaining
services in remote regions caused by poor roadway conditions. Luther, who previously
worked for Vocational Rehabilitation (121 projects) in Arizona and New Mexico, uses a
wheelchair and works now as a PBX operator. He reports that "often roads are like
riverbeds." This condition essentially amounts to limited or no transportation, which
makes services outside the community inaccessible and obtaining employment almost
impossible. Frequently help is needed with filling out forms and many do not have access
to telephones, email or fax machines.
Luther emphasized that "people really want to be independent." He would like to see
monies earmarked for transportation for persons with disabilities. He also indicates that
community health representatives need to improve efforts to outreach to the community
and service providers need to become more sensitive to delivery of services in a timely
manner. The lack of such fosters depression. Luther gave a personal example of one bout
with depression in which he received no help, due in part to a lack of cultural awareness
and sensitivity. Service providers who understand Native American culture are critical.
Luther feels that more representation of Native Americans on the National Council is
vital.
Luther agreed with Roanhorse's point regarding the discretionary competition for
funding, finding it essential that American Indian Vocational Rehabilitation programs be
refunded without tribes having to compete for monies. "There needs to be some
stipulation in the law that allows for the continuation of a program without the necessity
of reapplication. Smaller communities expend energy in the reapplication process and
still don't know if they will get refunded." Luther notes that while reapplication is still the
norm, those who write plans must be creative within traditional guidelines.
He also noted the significance of family support. At age 52, Luther said he speaks from
an older perspective. "Family members must remember to say to each other, 'love
thyself.' One of the first things is to lift up the spirit. Otherwise, we're spinning wheels."
Grace Baca of Santa Ana Pueblo is a member of a supportive family. She accompanied
her blind brother, Dean, a telephone operator to the forum and has a mother who is a
double amputee and suffers with diabetes. Baca's father, Clemente, who regularly
transports Dean to work, also attended the forum.
Increased community outreach
Baca feels the need for more formal and structured outreach to her community about
available resources. "Local newspapers, television and radio stations, including 'Singing
Wire,' (KUNM) at the University of New Mexico should be informed of forums such as
this so that more Native Americans may learn about such things." Baca learned about the
forum through word of mouth: that is, from a friend who works in the Albuquerque
Independent Living Center.
Baca seemed quietly adamant that persons not be sent long ways off the reservation in
order to receive services. "Indian people want services where they live, where they have
grown up, where they practice their religion." She is also concerned that services not be
provided in old, dilapidated buildings that do not meet health and safety guidelines. She
also recommends more tailoring of programs according to age differences for young,
middle-aged and elderly person with disabilities. Some improvements in travel conditions
have occurred since tribal administrators and the Bernalillo County 911 communication
system authorities collaborated to assign road signs and residential addresses in her
village almost six years ago. Emergency vehicles no longer find it difficult to locate a
person in crisis.
Baca, like Medicinebull, believes it is crucial to schedule forums such as this one for
longer periods of time. Baca would like to see a public forum last for more than one day
in order for the perspectives of more people to be heard. She emphasizes that today's
public forum is a beginning dialogue which she would like to see continue. Ideally, Baca
would like to see an intertribal working advocacy group composed of the nineteen
pueblos in New Mexico and all Navajo and Apache from Arizona, Colorado and Utah.
Employment concerns
In the education and vocational rehabilitation group, Doris Dennison, a member of the
Navajo Nation, who lives in Tohatchi, New Mexico, is an Independent Living Specialist
with a spinal cord injury, employed since October 2003 with the San Juan Center for
Independence in Farmington, NM. Dennison's injury resulted from a car accident in 1986
in which she lost her one-month-old son because he was not in a car seat. After her
injury, Dennison utilized the tribal VR program through the Office of Special Education
and Rehabilitation Services (OSER) and the state DVR. Today she provides community
awareness and injury presentations, offers peer mentoring and support and makes
referrals to both VR programs and to Precious Life, a self-employment arts and crafts
incubation program.
Precious Life is funded in part by the Navajo Nation and is available to Navajo with
disabilities, though utilized mainly by those from New Mexico and Arizona. The
Precious Life Gift Shop located in Rio West Mall in Gallup, NM provides individuals
with disabilities an opportunity to bring their work from home and sell it.
The potential for people to become successful or gainfully employed through this
endeavor is limited because of transportation issues. Many persons do not have personal
vehicles and cannot utilize gift shops, get to shows to display work or obtain needed
services to help with their endeavors. Often people must travel 300 to 400 miles.
The Navajo Nation has a transit system, but services must be requested two weeks prior
to the ride date.
An additional obstacle to the success of the Precious Life program lies in the fact that
vocational rehabilitation system seems less interested in funding self-employment. "Arts
and crafts are seen as just a hobby which means that a person must transition out in three
months." Dennison reported. This means that individuals are confined to their homes to
sell what will sell. He observed that those involved in this program tend to fall back when
difficulties arise in their lives and need a lot of peer support to keep going.
Dennison reiterated: "there are only two Independent Living Centers: ASSIST to
Independence and the San Juan Center for Independence near the Navajo reservation that
are working to help with independent living services. This plays a big part in the outcome
of successful self-employment or employment for persons with disabilities."
Self-determination
A member of the Navajo Nation, who will be called simply KayPea, is now a case
manager supervisor who works in early intervention with children from birth to age 10
(depending on the doctor's referral.) In the education and vocational rehabilitation group
discussion KayPea related that she is "kind of an example," having experienced a serious
back injury in the late 1980's. Prior to her injury she was self-employed selling her
artwork. She had no knowledge of vocational rehabilitation services.
KayPea, who was offered SSI and a wheelchair after her injury, "just looked at the chair
and did not want to use it." She was told that she would be incapacitated for the rest of
her life. She also needed speech therapy for stuttering. It was very hard for her; however,
self-determined, she did 100% of her own physical therapy.
"I didn't lean on vocational rehabilitation. I was determined to walk again. I could not
walk up or down the stairs. I felt like a Jell-O. I started praying a lot. I walked up and
down the hill. I was walking like a baby. Every month I might have a migraine attack. I
was determined."
KayPea designed a personal flow chart to help achieve her goals. Her flow chart includes
8 steps.
• Educate self to work/ seek employment
• Do art work
• Sell art work
• Save money
• Pay for college
• Get degree
• Work in community
• Finally, you have your life of success/work in community
"I trained myself to attend as many classes as I could in order to receive my degree. I did
not lean on any of the resources like for money. I earned my own money and paid for my
classes. I struggled with expenses, but somehow I made it through."
KayPea, who continues to occasionally show her sand painting, declares "I'm walking
again. Life is precious. I'm thankful for myself. All that's left is the scar on my back."
When asked about follow-up after this forum, KayPea, like Baca, indicated the need for
more efforts to disseminate information. KayPea would like to see a huge public
awareness fair. It is important to provide information on all resources accessible to Native
Americans. KayPea says she does not want persons with disabilities to feel as though
they are alone.
Consensus
Among the approximate 120 Native Americans who attended the forum, there seemed to
be a consensus about the service needs for American Indians and Alaskan Natives with
disabilities. There exists a strong commitment to systems advocacy and cultural
representation on policy making boards. It is necessary to establish greater cultural
awareness among service providers. Tribal governments need additional education in
understanding the provision of services. State agencies need to become culturally aware.
Legislation to increase and insure funding for disability programs and the Indian Health
Service needs to be instituted at Federal and state levels.
These raised voices resounded with urgency; from Ray's authentic anger to KayPea's
sense of fulfillment. American Indians with disabilities who reside in rural or remote
regions with unpaved roads cannot be ignored. The challenge is clear. Reality means
being intentional; to listen, to hear, to do; that is, to change attitudes, policies, programs,
practices and procedures in innovative, beneficial ways for those who live daily with
disability. Reality means falling into the mud of discomfort or even discontent associated
with disability to search for hopeful solutions. Dialogues that offer grassroots
perspectives must continue!
The author's writings have been published in Honey Hush! An Anthology of African
American Women's Humor, Callaloo, Obsidian, The Southern Review, New Virginia
Review, The Sun Magazine, Xavier Review, Richmond Free Press, Coloring Book: An
Eclectic Anthology of Fiction and Poetry by Multicultural Writers, The World Book of
Hope & The World Healing Book, and elsewhere. Currently she is circulating an
inspirational fantasy for young adults, Promise, and a color illustrated personal growth
text, Journey Within: A Healing Play Book, and is at work on Redemption, a collection of
short stories.
Empowering Disabled Youths to Gain Access to an
Education in Russia and the Commonwealth of
Independent States (CIS)
By Bruce Curtis, World Institute on Disability (bruce@wid.org)
Background
Disabled children, youths and their parents in Azerbaijan, Armenia, Russia and
Uzbekistan face daily discrimination and attitudinal and physical barriers to an adequate
education: 1) schools are inaccessible; 2) children, especially those with developmental
disabilities, are often classified as "un-educable;" 3) the "home schooling program" for
disabled children is highly inferior to school classes; 4) for disabled students who attend
university, no additional services or assistance are available; 5) the majority of teachers
and administrators in schools and universities have little or no exposure to disability
issues; 6) there is little or no accessible transportation; and 7) many parents of nondisabled children are resistant to their children studying with disabled children.
Achieving effective social advocacy with Disabled Youth Activist (DYA) teams
Since 1997, WID, Perspektiva , and 10 regional disability NGOs have been collaborating
together to create an effective model for training disabled Russian youths as disability
awareness educators and disability rights activists working for community-based social
change. In 10 regions over the last four years, WID and Perspektiva have proven that
disabled youth who have participated in their advocacy and youth empowerment projects
have the necessary idealism and energy to succeed in the overwhelming task of changing
the current environment of legal, physical and attitudinal barriers which limit the full
community participation of disabled people in Russia.
The World Institute on Disability and Perspektiva have jointly decided to focus on one
major human-rights issue - one which is critical for the future success of disabled adults
and children in Russia (Siberia), Azerbaijan, Armenia, and Uzbekistan - Access to an
Equal Education.
Two New Projects
(1) In July 2003, WID, Perspektiva and four other Disability NGOs received three years
of funding by USAID to improve access to inclusive education for children and young
adults with disabilities. The Partners believe that we have satisfactorily developed the
skills and self-confidence of the Disabled Youth Activist teams in these four cities to
advocate for the human and legal rights of disabled children and youths who want to
receive an appropriate and equal education in the Russian educational system.
The Protection of the Human and Legal Rights of Russians with Disabilities: Access to
Education Project will assist USAID, Russian government policy-makers and disability
NGOs to ensure that human rights, civil society, and education becomes more accessible
to people with physical and mental disabilities in Russia. Perspektiva, WID and its NGO
partners will jointly create a model, multi-regional legal advocacy network, that works in
partnership with community coalitions to promote and defend the human and legal rights
of disabled children and adults to an equal education. WID and Perspektiva believe that
essential advocacy tools are partnerships/coalitions with government agencies,
educational institutions, parents' groups and other disability NGOs in their communities,
which can advocate for greater access to education for disabled children and youths.
Through organizational strengthening and human-rights/legal advocacy training of the
Down's Syndrome Association of parent organizations and other disability and parents'
NGOs, this Project will demonstrate that legal and civic coalitions and networks can
successfully legislate, enforce and defend human and legal rights to an education in
Russia.
(2) In November 2003, WID, Perspektiva and10 Disability NGOs in 4 countries,
Armenia, Azerbaijan, Russia (Siberia) and Uzbekistan, received funding by USAID to
implement a new three-year project, The International Network of Disabled Youth
Activist Teams Promote Equal Access to Education . Project partners will empower
disabled youths, parents and other members of the community in 4 countries to challenge
discrimination against persons with disabilities in their communities and to advocate for
the elimination of the social and physical infrastructure barriers to an equal education
faced by young disabled people. The Project partners will provide 10 Disabled Youth
Activist Teams in four countries with the skills and practical experience to become more
effective disability advocates and leaders in their communities as they learn to mobilize
and train other youths, negotiate professional partnerships, form and lead a community
wide coalition, collaborate with local media professionals, create tangible
social/community changes, make public presentations, and educate government
representatives.
Disability Film Festivals as Public Education
The Project partners propose to utilize Disability Film Festivals to introduce the general
public in Armenia, Azerbaijan, Russia and Uzbekistan to the viewpoint of disabled
individuals as normal people who have equal rights and as contributing members of the
community. Perspektiva and WID will host the 2 nd International Disability Film Festival
in Moscow, after which each of the 10 DYA Teams, will host in their cities, a Best of
Festival showcase of Disability Films in order to provide the public, parents, disabled
children and youths with their first wide exposure to films about people with a variety of
disabilities who are positively contributing and participating in society. DYA Teams will
also lead public education activities in the schools to raise awareness about Access to
Education issues, and they will hold trainings for government officials, educators, media
and legal professionals to raise their understanding of the need for inclusive education
practices. The DYAs will collaborate with media professionals to produce PSAs and
videos about disability issues and Access to Education that reflect the unique
circumstances of local conditions, laws, attitudes, and most importantly, cultural identity.
Finally, they will provide awareness trainings to 2000 children and teachers in
mainstream schools about inclusive education.
Reduce Isolation and Increase Sharing of Information
A key goal of this project is decrease international isolation and to increase the exchange
of information amongst Disability NGOs in the New Independent States. The Russiabased Independent Living Network of Disabled Youth Activists will share their three
years of expertise as social advocates, trainers and community leaders with the five new
teams of DYAs. The new DYA teams will share information internationally about their
countries and Access to Education experiences by writing 30 current events articles for
Disability World, now visited worldwide by 35,000 persons a month. Members of the
disability community throughout Russia will learn about disability issues in Azerbaijan,
Armenia, and Uzbekistan through Perspektiva's newsletter and website, both of which
will be expanded to contain information about project activities and all Project outputs
and accomplishments.
Independent Living briefly
National Spinal Cord Injury Association E-News
May, 2004
New Newspaper on Spinal Cord Injury
NSCIA is pleased to announce the publication of the first national newspaper on the
subject of spinal cord injury and disease, SCI Life. Edited by Gary Karp - a published
author, speaker and advocate for persons with SCI/D - SCI Life will be one of the most
widely circulated publications on the subject of SCI. Each issue will be filled with
insightful articles on quality of life, travel and advocacy and much, much more. The only
way to receive SCI Life is to become a member of NSCIA - membership is free so you
have nothing to lose!
Supreme Court Rules in TN v. Lane
January of this year, the day before oral arguments commenced, a group of activists
crawled up the steps of the Supreme Court to draw national attention to the case. In a
major 5-to-4 decision announced on May 17th, the Supreme Court ruled in Tennessee v.
Lane that Congress acted within its authority when it made states liable in federal court
for failing to comply with the Americans With Disabilities Act (ADA). The majority of
justices upheld the portion of the disabilities law that empowers individuals to sue states
for noncompliance with the ADA. This case originally arose out of the need of persons
with disabilities to be carried up and down stairs in court houses across the nation. The
plaintiff, George Lane, was actually arrested at the bottom of a flight of stairs for "failure
to appear" at the top of the stairs!
Just a Beginning
By Gary Karp
Just out of rehab? These days, spinal cord injury or disease (SCI/D) below the cervical
level means you probably spent about a month in rehab after a brief acute hospital stay.
People with a higher level of injury typically get a few more weeks of inpatient attention.
Our Top Story: Darth Vader's a Helpless Cripple
By Mike Ervin
"Darth Vader's a Helpless Cripple." This comes from my always entertaining archive of
supermarket tabloid disability headlines. I didn't save the date on this one but judging
from the brittle yellowed state of this clip, it's probably circa late 1980s or so.
My Diary
By Katrine Seghetti-Mayhew
Katrine Seghetti-Mayhew's son, Clayton, was injured in a driving accident on July 20th,
2003. Katrine decided to chronicle her family's experiences in a journal, detailing the ups
and downs of Clayton's journey from intensive care to rehabilitation through the on-going
process of recovery. Compassionate and heartfelt, she shares excerpts from her diary
below.
This Month's Topic: Supreme Court Decision
The Supreme Court has now ruled in favor of persons with disabilities in TN v. Lane.
Citizens can now sue state governments demanding they, like private businesses, must
comply with the ADA. What affect do you think this case will have on your life? Click
here to participate in our on-line survey!
Magnetic Therapy for Spine Injury
Magnetic therapy may help people with spinal cord injuries. Doctors at Imperial College
London administered magnetic stimulation to the brains of people with partial damage to
their spinal cord.
NSCIA Introduces Business Partnership Program
NSCIA is pleased to introduce its new Business Partnership Program! All NSCIA
Business Partners receive acknowledgement in NSCIA's official publication SCI Life,
our website www.spinalcord.org and this electronic newsletter. NSCIA Partners are also
entitled to a 20% discount on all NSCIA marketing and advertising opportunities. NSCIA
would like to gratefully acknowledge the support of our initial Business Partners:
• Three Rivers Holdings LLC
• Medtronic
• Medtronic Foundation
• Acorda Therapeutics
• Darden Restaurants
• Cingular Wireless
• Astratech
To learn how becoming an NSCIA Partner can benefit your business, email
mroth@spinalcord.org.
SCI Rehabilitation Research and Training Center (RRTC) on Secondary
Conditions and Exercise
While few would argue as to the far-reaching benefits of exercise, due to numerous
barriers, it is difficult for individuals with spinal cord injury (SCI) to consistently
participate in a routine exercise program. Sadly, individuals with SCI may have the
greatest potential to benefit from exercise and physical activity since they are less fit, age
at an accelerated rate compared with the non-SCI population, and are more susceptible to
numerous, often preventable, secondary conditions.
Profiles in Excellence
Sponsored By The Solutions Marketing Group
Daryl Mitchell Is Part of the Family on "Ed"
By Joan Leotta
Fans of "Ed", an NBC show about a big-city lawyer who returns to his hometown roots
and pursues his high school love, enjoy the quirky comedy-drama's character-driven
stories. The ensemble cast features Tom Cavanagh as Ed Stevens, the lawyer who
impulsively buys Stuckeyville, Ohio's bowling alley in the pilot episode; Julie Bowen as
Carol Vessey, the girl of Ed's high school dreams; and various other employees and
regulars at the Stuckeybowl.
Copyright © 2004 NSCIA. All rights reserved.
Heathgate/HDI Publishers
Landmine Survivor Network (LSN) Report
The Blind Boys of Alabama and Friends
Grammy Award-winning Blind Boys of Alabama and friends, including Ruben Blades,
perform in a concert presented by LSN at tha UN General Assembly, Wednesday, May
26 at 7pm to celebrate and promote the U.N. Convention on Rights of People with
Disabilities.
The historic draft treaty will be presented to U.N. member states for discussion and
negotiation at a two-week Ad Hoc Meeting beginning on May 24.
High School Students Support LSN Work Around the World
Hundreds of high schools across the U.S. are organizing bake sales, stay-awake-a- thons,
three-legged races and other activities to raise awareness and funds to support LSN and
Adopt-A-Minefield USA.Full Story
What Happens to the Body When it Detonates a Landmine?As more mine-injured
return from Iraq, a trauma surgeon answers questions.
Dr. Howard Champion has been a trauma surgeon for over 30 years. He is the former
Chief of Trauma at Washington Hospital Center.
SR: What happens, physically, when someone steps on a landmine?
Dr. Champion: The anti-personnel landmine is designed to explode with great force
against the human body, with the idea of causing lethal injury. And what happens is,
there is an explosion which causes gases and pre-formed and unformed metal fragments
to fly into the tissues breaking the bone, ripping apart the vessels and muscles, causing
tissue damage, much of which is not repairable.
Ugandan Woman Recovers from Landmine Injury to Advocate a Ban
Margaret Arach is a mother of five who was riding in a bus in Uganda in December,
1998. Rebel troups had lined the roads with mines. Margaret was in the front seat when
her bus hit the mine.
"The rebels had planted the mine, so they were lying in wait, in the bushes. That was how
they did it. They would plant the mine in the straight part of the road. So, we knew a bit
about that, and there was no talking on the bus. As we came out of the curve, to where the
road was straight, the next thing I hear was a big explosion. And I thought we had just
lost a tire. I didn’t know that the loud explosion had taken off my leg..."
Message From Jerry White
What does it feel like to step on a landmine? The short answer is, it hurts. The long
answer is, it forever divides your life in two...before your accident and after. Before the
accident, who thought about words like "disability" and "prosthesis" or "phantom pain?"
Not me. Twenty years ago, I was hiking in Israel and a mine blast opened the earth
beneath me.
NETWORK NOTES: Update on Preparations for the U.N. Convention on the Rights of
People with Disabilities
LSN Executive Director Jerry White, along with LSN staff, attended a conference in
Egypt April 26-27, titled "Egyptian Perspective on the Convention of the Rights of
People with Disabilities." It was held in Cairo, under the auspices of the First Lady, Mrs.
Suzanne Mubarak.
Cast of NBC's "The West Wing" Performs at Fundraising Event for LSN
Martin Sheen, Stockard Channing, and other "West Wing" cast mates performed a
dramatic reading of the landmine survivors play, "Raising Our Voices," in Los Angeles
on May 3, 2004. The play, a collection of survivor stories, was written by Alyson Feltes
and Tessa Barlow, two Canadians who wanted to do something to help LSN raise
awareness and funds for its work.Full Story
Deminer Killed in Yemen
Mr. Seleh Mohammad Al Annasi, 28, a deminer in Yemen, was killed on April 17, 2004.
Mr. Seleh was clearing mines in Minefield No. 2, in Jabalul Shieba Mountain, Marish
Village, Al Nadira District.
For more information please visit www.landminesurvivors.org
Money Smart : free CD-ROM training program on improving money and banking
skills available from the FDIC
The Federal Deposit Insurance Corporation (FDIC) launched a free training program,
Money Smart , targeting adults outside the financial mainstream to increase their money
and banking skills. This 10-module curriculum is being successfully used by some
disability organizations as a financial education tool for persons with disabilities and their
families. For more information, please visit
http://www.fdic.gov/consumers/consumer/moneysmart/index.html.
Access & Technology
A Visit to the Virtual World: Computer-adaptations for
disabled people
By Petra Jorissen, Amsterdam
Are you blind or partially sighted? Do you only have one arm or can't you use both of
them? Maybe you don't even have your voice at your disposal, or are you - because of
disabilities - tied up like a parcel on your bed? Whatever the problem may be, if you can't
use your brawn, use your brain. There are many dodges and tricks in the world of
computers. People with severe disabilities also can communicate via computers. Having a
look at the virtual world seems to be possible for everybody.
Let's start simply. Imagine you're one-armed; a one handed keyboard is a perfect
godsend. At present many different one-handed keyboards are available. Keyboards for
left-handed and keyboards for right-handed people. Not all of them are user-friendly and
also prices vary. To give you an overview of what is available, the following is a short
description of two of them.
IBM designed the Half Keyboard, a solution for left-handed users. This is a compact,
wearable keyboard with a small amount of big keys. Each key has two characters. If you
press longer on the keys, you can use the characters that are on the right sight of a
"normal" keyboard. The keyboard looks magnificent, and you can easily transport it by a
clip on a strap of your trousers or dress.
The Frogpad is made in Germany and is a one-handed, wearable, also magnificent
designed keyboard. It may be used with USD keyboards, compatible PDAs, pocket PCs,
tablet and wearable PCs and other mobile applications.
Of course, there are also special typing courses for one-handed users such as Five Finger
Typist , special software that is available on diskette. You can find additional information
about Half-Qwerty Software in the list of special sites at the end of this article. When I
saw the photos on the website, I wondered why I, a two-hand user, should not move on to
such a nice, compact, wearable half-keyboard.
Special binoculars
What do you do when you can't use your hands at all? Janine Romijn, a Dutch woman
with spastic paralysis can't use her hands. She is inseparable from her LUCY, a specially
adapted computer and keyboard, designed for people who cannot use their hands. With
LUCY, Janine operates her personal computer, her printer and different communication
aids. She does not use any special software. Janine wears a special head strap onto which
small laser indicators are fastened. By little movements of her head she can operate her
computer and many other appliances that can assist her. "Working with LUCY is
comfortable, simple and can be very fast. You only need some practice and after that, you
don't want to stop," says Janine. Her advice: if you can't use your hands, be smart and use
your head!
And she did. For ten years she was employed as a technical designer. Currently, she has
her own business, called Headlight. She gives advice and information to people with all
kinds of disabilities about how to use LUCY and other special computers.
LUCY has been gradually succeeded by VisionKey. People who use VisionKey don't
need to move their head; they only have to move one eye. With the "free eye." the user
can look at other things in the surrounding area. Vision Key is a lightweight, miniature
binocular that is worn on someone's head. A very small "eye-catcher" is integrated inside
the binocular. The eye-catcher communicates with the specially adapted visual keyboard
and the computer. In addition, it is possible to build-in an internal and external speechsynthesizer for people with speech disabilities.
VisionKey is not only is a device that helps people with severe disabilities to
communicate, it is also very suitable for learning and working. Users can make their own
website or a Power Point presentation. VisionKey can also open doors and windows, turn
on the lights and so on. One VisionKey user wrote - situated in his bed - a book by using
VisionKey. Many "binocular-wearers" have severely disabilities such as Amyotrophic
Lateral Sclerosis, Muscular Dystrophy, Cerebral Palsy, Traumatic Brain Injury,
Quadriplegia and Locked-in-Syndrome. The easy to use binocular really is a window to
the world, especially for people with Locked-in Syndrome. The binocular also makes it
possible to surf the World Wide Web.
Screen readers, talking checkbooks and a unique 3D computer game for blind
youngsters
What could you use when you have no vision or low vision? Low vision users can use a
screen-enlarger to read text on a computer screen, and when a blind user wants to read
the text on a screen, he can use a screen reader. This adaptation analyzes the information
on the screen and converts it into Braille, speech or both. A screen reader itself does not
talk, but it sends the information on the screen in ready-to-eat chunks to the speech
system and/or to the Braille- read system. With a screen reader, blind people also can use
the Internet.
There is a brand new 3D computer shooting game for blind youngsters. The game is
designed by students of the Arts Academy in Utrecht (Holland) in cooperation with
Bartiméus, an institute for the blind. The computer game, called Demor , especially aims
to entertain blind youngsters. "It is a sensational experience," said one blind player.
Demor players are not sitting behind a computer, but they are walking around in a huge
area in the open air. A 3D audio world is in this area created by means of special
software. As soon as the game starts, players get into the middle of a virtual world of
sounds. Walking around they hear sounds from all directions. The sound environment
adjusts real time to the position of the player and the direction at which he is looking. The
goal of the game is to eliminate as many monsters as possible, and for every eliminated
monster, the player gets points. Demor players are equipped with a laptop (in a rucksack),
a headphone, a GPS-receiver, a head tracker and a special joystick. Blind players
experience a sensational feeling of physical freedom. Players without visual impairments
found the game very exciting, because instead of using their eyes they exclusively had to
listen.
Oh no, it's not only entertainment that makes the world go round. Blind people also have
to do serious things, for example, bookkeeping. A talking check-book can help you if you
can't read the numbers in a regular-sized register.
There is much movement in the computer industry. This morning, I even read a short
article about "Brainfingers," a computer adaptation for users who control their computer
by means of their thoughts-- again something new that staggers me.
Sites with information about one-handed keyboards and software
http://edgarmatias.com/papers/chi94/
http://www.almaden.ibm.com/cs/user/inddes/halfkb.html
http://www.kaizenfrogpad.com/online_store.html
http://www.handykey.com
http://www.keyalt.com/keyboards/halfqwertysw.htm
http://www.accessibility.nl
Site with information about VisionKey
http://www.eyecan.ca/
Site with information about screen readers
http://www.dolphinuk.co.uk/
Site with information about Demor
http://demor.hku.nl
Bangladesh: The Promise of Information Technology
for People with Disabilities
By Vashkar Bhattacharya, Bangladesh (vashkar79@hotmail.com; http://www.vashkar.tk)
Reprinted with permission from the author.
In the primary stage of civilization...it was beyond almost all human imagination to
integrate... (a) dreams (b) opportunities (c) information & (d) knowledge. The wheel of
civilization began to move from that primitive time when these four factors came to the
same parallel. And just after the starting of technological development, human sufferings
and incapabilities began to lessen.
We are all well informed about how far we have reached and...the advancement of
civilization. In the course of....time we can observe the 21st century by turning the age of
stone, the age of engine and the age of automatic era. And... we can call the present
civilization an era of Information Technology.
I shall leave no stone unturned to disclose you how people with disabilities have
overcome inability.... Information Technology is now in Bangladesh. My thanks and
gratification goes to the authorities of UTSA ( Unite Theatre for Social Action) for the
arrangement of this seminar for the first time in Chittagong.
It is said that one is powerful who has information in his hand and the key of this great
powerful information is very familiar one to all of us----it is nothing but a mere box --a
computer. You might be thinking over... how people with disabilities can use the
computer---especially visually impaired persons.
To remove your doubt I would like to cite you an example from my own experience
while I was in Japan. Being a visually impaired person, I have always relied on others'
cooperation for my reading, writing & collecting information.
I had to rely absolutely on written Braille to express my views. To do something i.e.
writing & reading by the help of others it was impossible for me leaving the Braille.
However, to be self-reliant it was necessary for me that I should read and collect
information by my own endeavor.
I like to express--in boastful words-- in full confidence that I have already overcome my
difficulties being a disabled person through computer-based information technologies. I
have already expanded my fields of communication by adopting a computer. Now I can
communicate & exchange my views with foreign friends on a regular basis by using the
information technologies (IT) and I would like to cite you an example here in this regard.
While I was in Japan, one of my friends named Mary from Philippines suddenly became
ill at 12.30 a.m. Another friend named Jessica from Malaysia was present there as well.
As Mary was ill, I needed to communicate with Jessica about what to do at that moment.
Although I could do these things easily, the problem lay in another place. My ill-fated
friend is physically handicapped, Jessica is hearing impaired and I, as you know, am
visually impaired. The problem was severe because we were all disabled in different
ways or fields So, we could not solve the problem regarding Mary's illness at that critical
moment. The only thing which helped us greatly at that time was my Screen Reader
Laptop--the vital friend of the critical moment. This tiny & little thing, i.e. Laptop, helped
us greatly to solve the problem regarding Mary's illness.
By citing this example, we can...suggest that we can solve all our problems using this
software in computer! Now, let's come to the point - how we could solve the problem, i.e.
communicate with each other since we were all disabled in various fields.
A person with visual impairment can use a computer with... Screen Reader software. This
software can tell and read to you loudly when a command is given by pressing a button of
a computer. A person with visual impairment can use a computer without using a mouse
but merely using the key-boards of the computer.
Now let's go to the screen----I want to start the computer. I have to click Ctrl +Esc and
the computer will start as well as the software will read to me out loud. Now I like to go
to the Program Menu, then I have to press the key "Down Arrow" or press the 'P' letter
from the keyboard. All the commands to be done to the computer will be read to me
aloud by a speech synthesizer.
Different types of Screen Reader Software are available in different languages. I do not
know whether the software in Bangla is available or not. If it is not available in this
country, I can assure you. So we can use software in English language.
I use Screen Reader Software in English and its name is JAWS (Job Access With
Speech). I can use it in Japanese language also. Generally I use three software and they
are: 1) 2000 Reader; 2) IBM Homepage Reader; and 3) ALTER. By using these
softwares we can go forward in our studies both in Japanese & English. I have been
communicating with friends in foreign countries through Internet both in Japanese & in
English.
I think it is possible to develop screen reader software in Bangla. And cooperation and
necessary steps should be taken up by the policy makers of Bangladesh Government and
the authority concerned in this regard.
I have told you some words about Screen Reader Software and now I would like to tell
you about the other ways to demonstrate Braille without sound. Braille characters are to
be seen on the device called Braille display with this software.
Any blind person can compose all desired information into Braille easily.
While I was in Japan, I used to read Bangladeshi English newspapers on a regular basis
in Braille through Internet. It is a matter of real fact that you can read the paper with your
own eyes while I can read the same thing in Braille and it is possible through using the
special software of a computer.
I could be pleased if I could display the Braille on Screen but its cost is beyond my
imagination to acquire the device.
I had an opportunity to study Braille Library Science in Japan. I became acquainted with
various software available in Braille. There is some Braille software and using the same
you can compose information into Braille very quickly. All that you need is a Braille
Printer to transcribe the printed matter into Braille. You want to send a letter to one of
your blind friends but you do not know how to write Braille. Simply compose your letter
on the computer and command the special device by pressing a button to transcribe it into
Braille and it will offer you the Braille letter exactly. You need not know the Braille
system at all.
Another software is available which has only six keys of Braille characters. Being a blind
person, you want to write a letter to your sighted friend and it is possible using the
software.
I have a long cherished desire to establish an ultra modern computer-based audio visual
Braille Library for the disabled people in Bangladesh.
I have tried my level best to describe to you concisely the Braille display, Braille
Software & Braille Printer. Now I like to familiar you with a recently developed digital
software named DAISY. It is very popular and famous Audio-Visual system for "print
disabled" persons.
I want to let you know that I am fortunate enough to be the first person from Bangladesh
to have training on DAISY. It has many features. With this software a CD can be
recorded 50 hours long information, even with movie pictures. As a result, all everybody
can use it for a variety of purposes. It is very a useful device for the persons with learning
disabilities.
DAISY has another feature--we can locate any page, any line and even a single word
from the recorded version. It can be used for spelling words also. This device is not for
the exclusive use of disabled persons, but also to be used for illiterate people.
The Daisy Consortium--"Daisy For All" imparts its services to many developed and
developing countries. In Bangladesh we hope to be taken soon to its destination.
Now I like to inform you about the Scanner--a device by which a blind person can read
any printed matter sent to him/her. By using it, a print handicapped person can read
printed letters, magazines & periodicals, books and so on easily and smoothly. You need
not depend anymore on others to do these things.
I have already told you about Screen Reader software, Braille Display, Braille Software,
Braille Printer, Daisy and Scanner and using these modern technologies all sorts of
people with disabilities can lead a happy life overcoming the barriers of life.
I am not telling you about technologies only available to such well known disabled
persons such as Mr. Stephen Hawking or about the British Home Minister, visually
impaired Mr. David Blunkett...this technology is becoming more available to all.
I am mentioning just now with deep honor to my teacher Mr. Suzuki Jr.--who is working
as a Product Designer of worldwide famous Sony Company; my teacher Mr. Kiriakee
Masanorie--he is a Computer Programmer from Japan and my friend from Thailand, Mr.
Sankrenk who is a Web-Page Designer----from whom I have learned a lot of things. I am
indebted to them. The above three learned persons are visually impaired but they are
enjoying their dignified lives like another successful men of the world by using the
modern information technologies.
Many examples can be cited... how through information technology... a visually impaired
person can operate computers, speech impaired persons can speak, hearing impaired
persons can hear using adaptive aids and mentally impaired person can develop his/her
I.Q.
I believe these mere works can be performed by the PWD here in Bangladesh. According
to the statistics of the U.N.--only 10% of world population are handicapped in any way.
In our country there are 1 crore 40 lakhs [14 million, or 10% of Bangladesh's population]
of people are handicapped in any sort. It is not desirable for the nation to be developed
infrastructurally, deprived of this vast population from the mainstream of development.
We have been always saying boastfully that 10% of our national budget is spent for
educational purposes in each year. Hence, educational activities of people with
disabilities rely on the department of Social Services. This special and important sector is
to be given to the Ministry of Education for mobilizing its development and improvement
in a rapid speed. So disabled persons been deprived from the very beginning taking them
away from mainstream of education, employment, development and so on.
We are always satisfied and contented by saying that we are spending a lions share of our
budget for the educational sectors but do we know exactly how little amount of money is
spending each year for spreading education of disabled people in Bangladesh? We should
be thinking over the matter from now on. It is needless to say, that the computer has yet
to be utilized for people with disabilities in the educational institutions in Bangladesh.
The Internet is the biggest library of the world. How much we have been bathed by
adapting its fruitful results. Hence it can be a medium of collecting the information from
various sources. A disabled person can be a human resource if he/she is given proper
education and training providing a computer----then no disabled person will be seen
anymore in the country crying for a job and rehabilitation.
I am working with UTSA, having a dream in my heart that a separate Ministry for
Disabled Persons will be set up urgently for the overall development of the deprived 10%
population of Bangladesh.
Global Universal Design Educator's Calendar
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.
June 2-6, 2004: EDRA 35, 'Design with Spirit,' Albuquerque, New Mexico, sponsored by
Environmental Design Research Association (EDRA). Conference celebrates the
awareness, passion, oneness, and surrender to higher influences in our creative processes
of conceiving, shaping, and evaluating our built and natural environments. Taken in the
broadest of connotations, spirit not only infuses us with enthusiasm, connection, and
original thought in our process, but also manifests in our products. As we strive to create
holistic habitats of power and peace, we account for body, mind, and spirit in our criteria,
intentions, and choices. See: http://home.telepath.com/~edra/home.html.
June 14-18, 2004: 'Towards full Citizenship'. The 8th International Congress on Including
Children and Youth with Disabilities in the Community. Stavanger, Norway. These
Congresses have given people from both developing and developed nations the chance to
share policies and programs that promote the inclusion of children and youth with
disabilities in their everyday lives at their home communities. Congresses have focused
on building self-determination and self-reliance at the local level for children and adults
of all abilities. See: http://www.statped.no/congress2004/
June 16-17, 2004: 'The Universal Package: designing packaging for everyone' Lansing,
Michigan, sponsored by The School of Packaging. Welcome to this innovative event, a
first for the industry. Pharmaceutical, personal care, consumer goods, food and beverage
packages are being held to a similar standard by consumers: they must have great utility.
Packages that save time, thinking, and work, making life easier, are in demand. Although
improvements that increase utility may add mere "convenience" to the life of an
"average" healthy consumer, they can be much more impactful on the lives of the elderly
and disabled. We should consider making these people the central concern of designers.
See: http://www.universalpackage.msu.edu/welcome/welcome.htm.
June 19-22, 2004: RESNA 2004, 'Technology & Disability: Research, Design, Practice
and Policy,' Orlando, FL, sponsored by RESNA, Rehabilitation Engineering & Assistive
Technology Association of North America. This year's conference has seven main topic
areas: Computer Access and Communication, Job and Environmental Accommodations,
including Ergonomics, Seating and Wheeled Mobility, Technology for Cognitive and
Sensory Impairments, Public Policy, Outcomes and Quantitative Measurement, and Other
which includes Technology Transfer, Rural Rehab, Robotics, Telerehab and more. See:
www.resna.org.
June 19-22, 2004: Evaluation in Progress: Strategies for Environmental Research and
Implementation. Vienna, Austria. Conference organized by The Institute for Spatial
Interaction and Simulation. This conference is research and practice in progress - it will
provide a forum for scientists, professional practitioners, and policy makers to debate
ways and means of stimulating new proposals, documenting existing situations and
assessing diverse tools and techniques that can promote evaluation and user feedback.
See: http://info.tuwien.ac.at/iaps2004/
June 28, 2004: Deadline for Proposals of the eLearning Programme 2004-2006. The Call
is focused on three of the four areas of intervention of the eLearning Programme: 1.
Promoting digital literacy, 2. European virtual campuses and 3. Transversal actions. For
more information see
http://europa.eu.int/comm/education/programmes/elearning/call_eac2604_en.html.
June 21 - August 1, 2004: 'Building Careers in Design' is a new college level online
course for career and vocational counselors. This 6-week 30 CRC credit course begins
June 21 and is offered through the Interwork Institute of San Diego State University, in
cooperation with Adaptive Environments, Boston, MA. The course fee is $175. For more
information see www.careersindesign.org or contact Kristin Schneider at 617-695-1225
ex 35 or kschneider@AdaptiveEnvironments.org.
July 1, 2004: Deadline for INTERIORS '05: The ASID Conference on Design, San
Diego, March 17-20, 2005. The submission should address one of the following broad
categories: Sustainability/Green Design, Universal Design/Aging in Place, Security/
Personal Safety/ Privacy, Health, Safety and Welfare, etc. For more information see
http://www.asid.org/asid2/designer/Call%20for%20Presentations.pdf.
July 9-10, 2004: Tools for Life 2004, A 21st Century Look at Assistive Technology,
Honolulu HA. The Tools for Life Expo and Conference is a collaborative exhibit with
concurrent workshops designed to bring information to individuals with disabilities, their
families, and advocates regarding civil rights laws and technological support options to
maximize independence in society. See: http://www.assistguide.com/toolsforlife/
August 24-27, 2004: The 7th International Conference of Human Services Information
Technology Applications 'Information and Communication Technology (ICT) and Social
Inclusion,' Hong Kong, sponsored by HUSITA (Human Services Information
Technology Applications) an international association of information technology (IT)
innovators in human services dedicated to promoting ethical and effective use of IT to
better serve humanity. The conference will revolve around four major sub-themes.
Information and Communication Technologies (ICT) in Social Services, ICT in
Rehabilitation, IT Education and Training in Human Service Professionals, and ICT in
Community and the Information Society. See: http://www.hkcss.org.hk/husita7/
August 31, 2004: Deadline for 'A Competition for Narrow Lot House Designs of
Excellence - Living Smart Project,' sponsored by Portland Bureau of Development
Services. A competition for the design of affordable single-family detached housing on
very narrow lots. The goal of this project is to create a catalogue of house designs that
can be built on 25-foot wide lots. Designs that meet the needs of first-time homebuyers,
provide design compatibility with a variety of neighborhoods, and respond to a range of
market demands are all desired outcomes. See:
http://www.livingsmartpdx.com/default.asp.
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 non-government 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/1112_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 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 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 pan-world 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
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 info, 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.europoint-bv.com/events/?child2004.
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
programme 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 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 8-12, 2004: 'Designing for the 21st Century III: An International Conference
on Universal Design,' Rio de Janeiro, Brazil. Sponsored by Adaptive Environments and a
number of international groups, including Metropolis Magazine. 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. See: http://www.agingconference.org/jc05/theme.cfm
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 (WSIS) Tunis,
Tunisia. The first phase of WSIS took place in Geneva and the second phase will take
place in Tunis. 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. The first phase of the Summit in Geneva
adopted a Declaration of principles and a Plan of Action for implementation by
governments, institutions and all sectors of civil society to deal with the new challenges
of the ever-evolving information society. 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/
Additions to the calendar, questions, comments, new subscriptions, write to Elaine
Ostroff at elaine@ostroff.org
Elaine Ostroff, Editor Director, Global Universal Design Educator's Network; Founding
Director, Adaptive Environments Center
Diane Richard, Editorial Assistant Center for Universal Design, College of Design, North
Carolina State University.
New Disability Bill must go full steam ahead on
transport rights says DRC
A proposed Disability Discrimination Bill (DDB) should pave the way for substantial
civil rights in transport for Britain’s 9.8 million disabled people by 2006 according to the
Disability Rights Commission (DRC).
The Joint Committee of MP’s and Peers’ report on the Government’s draft disability bill,
published today, was welcomed by the DRC as a major step forward in solving the
discrimination disabled people experience daily when trying to travel in Britain.
The Committee has rightly urged the Government to set a prompt and clear timetable for
new rights of legal redress for disabled people who currently can legally be refused use of
public transport, including buses, trains and taxis. The Committee has also recommended
an end date for all trains to be accessible to disabled people of 2017. This is the same as
the Government’s end date for bus accessibility.
Bert Massie, Chairman of the DRC, commented:
“This is great news for disabled people and, if implemented by the Government, will
close a major loophole in the Disability Discrimination Act (DDA). The Government has
been committed to introducing basic civil rights for disabled people using public
transport since the 1997 manifesto so it’s been a long journey. The Government has
already committed itself to a timetable to make vehicles accessible but achieving this
would be meaningless if disabled people could not use public transport because of the
current legal position.”
The Joint Committee has also recommended strengthening the rights of disabled people
in housing.
As Bert Massie explains:
“The DRC has long argued for provision to be made in law to prevent landlords and
management committees unreasonably refusing permission for disabled people to put in
adaptations to their homes to help them get around. We are therefore pleased that the
Joint Committee agrees with us and is urging the Government to include this in the draft
Bill.”
Furthermore, the Joint Committee has called for reform to help remove factors
contributing to the stress many people with severe mental health problems face in
challenging discrimination. This has also been welcomed by the DRC.
Mr Massie continued: “We congratulate the Committee for producing such a thorough,
accessible and authoritative report with proposals for delivering immediate benefits for
disabled people as well as a longer term agenda for change.”
Details available on DRC website: www.drc-gb.org
May 2004 Global Access Travel E-Zine
1. ARGENTINA ACCESS: LATITUD SUR
It was a treat to receive an e-mail from Adriana Pereyra at Latitud Sur, which promotes
accessible tourism in Argentina. Until now there simply weren’t any good resources for
disabled travelers wanting to visit such exotic South American places as Buenos Aires,
Iguazu Falls, Puerto Madryn, San Martín de los Andes and San Carlos de Bariloche.
Latitud Sur members have visited the tourist destinations in Argentina to determine their
access and have also designed tourist programs suited to the specific needs of various
disabilities.
Readers can check their site for information on accommodation, dining and
transportation, including adapted vehicles and rental cars. There is also information on
tango shows, plays, excursions, and recreational activities (museums, workshops, arts
centers, ‘estancias', boat trips, etc.).
Their services are available to assist travelers with specific needs, such as translators,
sign language interpreters, bilingual guides, traveling companions, nurses, and prosthetic
and rental equipment suppliers.
To learn more contact Latitud Sur at http://www.latitudsur.org.ar/
Or
Latitud Sur accesible - Asociación Civil
Avda. Santa Fe 830 - Piso 2º
C1059ABP - Buenos Aires - Argentina
Tel: (5411) 4312 5858 - Fax: (5411) 4315 0030
2. CRETE: ERIA RESORT
Eria, a new completely accessible resort in Crete Greece, will open in June. Located in
the historic village of Maleme, the resort is surrounded by olive groves and offers an
unobstructed view of the Cretan sea.
The ground level and first-floor rooms encircle the pool and the communal areas while
the balconies have a beautiful view of the Cretan sea. All hotel facilities are fully
accessible to people with disabilities, including the roof garden, restaurant, bar, gym and
pool, which has a ramp for easy access.
Wheelchairs (both electric and manual), scooters, hoists, stanchions, and an oxygen
compressor are available upon request. Doctors and a physiotherapist are also available.
An adapted mini bus is provided to transport visitors from the airport or the harbor. And
an excursion program for sightseeing is available.
To learn more visit http://www.eria-resort.gr/
3. LONDON BUS UPDATE
Juliann, of London, England, sent the following update to our April E-Zine mention of
London’s bus changes (see E-Zine Archives). Juliann writes: “London is not dumping
All double decker buses! They are just replacing the old ones with new ones that are
(mostly) wheelchair accessible. There are still issues with the new ones, but most
wheelchair users should be able to get on most of the time -- but only one wheelchair per
bus.”
4. NEW FRENCH GITES: BRITTANY & LANGUEDOC-ROUSILLON
Rhian van Kemenade shared the news of his accessible gite rental in the Northern French
region of Brittany. Rhian writes: “I have a gite in Brittany, suitable for families or groups
of friends, which has level-access facilities in the downstairs double bedroom. The
adjoining shower room has a completely level-access shower (no shower tray), shower
stool, and the WC has a handrail. Suitable for people with limited mobility and
wheelchair users who can walk a few paces within the bedroom and shower-room. The
large living space with kitchen corner is totally wheelchair accessible. I spent many years
working with people with disabilities (in Wales) and I believe the accommodation is well
designed for people with restricted mobility. Please see my website at www.brittanybreaks.co.uk
Mary Fitzakerly wrote from Britain to share the news of a newly renovated 17th-century
accessible gite in the Languedoc-Rousillon region of Southeastern France. The gite is
near Carcassone and many other attractions. Learn more at www.lacoume-gites.com
5. CRUISING: ENCHANTMENT UPDATE & JAMAICA VAN TOUR
Mindy Desen, of Lucky Mindy Adventures, http://www.luckymindy.com/
Sent us the following comments about her recent cruise on the Royal Caribbean Line
Enchantment and an accessible van tour in Jamaica. Mindy writes:
“I'm on the RCL Enchantment right now, which is pretty good for a six-year-old boat.
They've got 14 accessible cabins in a variety of categories, and, in general, the ship is one
of the most universally accessible I've yet found during my 10 years or so of escorting
groups of people with disabilities.
However, the two lifts on the Enchantment (for the pool and Jacuzzi) have a problem.
The Jacuzzi lift was removed and is supposedly being replaced (damage from salt water).
The pool lift was not functioning; it also has a wrecked part. I spent about a half hour
with the manager of Guest Services, Ray Lazure, VERY nice guy, who actually met with
the pool manager to find out what was going on with the lifts. He took down my story
and is going to personally see that RCL keeps spare parts for all this equipment on board
in the future, so it can be fixed immediately when needed. I've had two small groups on
this ship this year, and neither were able to use the pool lift for whatever reasons.
Actually I'm still very much impressed with RCL in general, compared with some of the
other lines I've used...
The last time I was in Jamaica (Ocho Rios) with a group, there was no such thing as lift
equipment available. Today I found they've got at least two small vans (holds 6) with
lifts, and we were able to book one by just getting off the cruise ship and checking with
the taxi people at the end of the pier. In 10 minutes, we had a very wonderful
driver/guide, named Noel Wilson (Jango, I think he nick named himself), who did a
custom trip for $20 each (plus we tipped him). He was with us for about four hours, and
we saw lots of nice stuff. The next time I'd recommend that we grab sandwiches from
breakfast on the ship, fruit, etc. and have a picnic. He said he's got lots of fantastic places
for that. Anyway, one highlight of having our own small group experience was being able
to stop wherever...including at a small fruit stand where we sampled about 8 types of
fantastic fruit, cocoa beans, allspice, etc. Just gave the farmer a couple bucks tip. Our
driver even stopped at one point and climbed a fence to pick some fruit for us.
He took us to a straw market, outdoor vendors, but they were a little aggressive. I guess
in my old age I just prefer to shop where you aren't hassled. The prices for T-shirts are
actually better in the stores. There are three main shopping centers easily reached. We
were at "Sony," I think. Noel doesn't recommend using the one closest to the port, as it’s
more expensive, he says. But it's newer and I'm guessing is more accessible.
With only a few accessible vehicles in Jamaica, it would be preferable to be able to book
in advance. "Jango" Wilson's phone number is: 1-876-870-6545. From what I read in my
phone book, you don't have to even dial the international access code to reach most
Caribbean islands. Just dial like you were dialing out of state. I know I saw a card with
his name listed as "Noel," but the card he gave me says George.
The inside of the Toyota van was pretty low, my guy had to tip his head a little, but he's
in a higher-than-average chair. We were still thrilled to be able to go somewhere with my
group, and Jango was a terrific guy. Very helpful, very fun. He sang lots of great
Jamaican music during the ride and encouraged us to sing along.
He took us to a market where each individual vendor was kind of hard-pressure, and that
wasn't (it never is) a great experience. As much as I'd like to buy at outdoor markets, I'm
finding that in Ocho Rios it's just easier and cheaper to go to one of the three main
shopping centers to buy the regular souvenirs, shirts, etc. The one by the ship is
supposed to be the priciest, but it's also the most modern.
6. NEW ZEALAND ADVENTURE
Syd and June Burns, of Penrith, England, who have shared their travel diaries many times
with Global Access, explore the access of “Kiwi Land” New Zealand in part one of their
latest trek. If you’re headed for this scenic land, their detailed diary is a must read.
http://www.geocities.com/Paris/1502/nzealandburns04.htm
Ljubljana's commitment to accessibility, recognised by
the European Mobility Award 2004
Article provided by the European Disability Forum
Following its success in winning the European Mobility Award 2004, the European
Disability Forum, member of the jury, congratulates the Slovenian city of Ljubljana for
the permanent measures it has taken in favour of disabled people 's access to public
transport.
Brussels, 2 June 2004 - The city of Ljubljana (Slovenia) was appointed yesterday as the
official winner of the European Mobility Week award 2004. The award, presented by
European Commissioner for environment Margot Wallström during an official ceremony
held in Brussels, recognises local action to promote sustainable transport in European
cities and towns. Special focus was given to permanent measures taken in favour of the
accessibility of disabled people, theme of last year’s European Mobility Week.
Chosen among the 723 other European cities invited to participate in this year's award
and winning against 2 other finalists (Almada, Portugal and Las Palmas de Gran Canaria,
Spain) Ljubljana was chosen by the members of the jury for its commitment to the
improvement of local transport, including accessibility for disabled users.
Ljubljana's local authorities launched several permanent measures in line with the
European Mobility Week Charter, including:
• Increasing of the parking places for people with disabilities;
• Installing ramps for wheelchair users in the passenger centre of the local public
transport operator;
• Organizing a round table, in close cooperation with the Slovenian National Council of
Disabled People, on bus and bus stop accessibility and the attitude of drivers towards
disabled users.
Ljubljana Public Transport (LPP) also has confirmed its commitment to continue its
efforts in favour of disability-friendly local buses, taking into account the specific needs
of disabled users (access for wheelchair users, information in alternative formats for
visually impaired people, training for the drivers).
“We are very happy that a new member State has received this award. We are confident
that other new Member States will also demonstrate a strong commitment to disability
issues. Ljubljana has paved the way, showing that the best way forward is to work in
close cooperation with the national organisations of disabled people”, said Yannis
Vardakastanis, President of the European Disability Forum.
While welcoming the decision on the award and the good cooperation with the European
Commission and all partners involved in the organisation of the European Mobility
Week, the European Disability Forum deeply regrets that the official award ceremony
held yesterday was itself not accessible for disabled people.
Details available on the European Disability Forum website: www.edf-feph.org
Heleen plays her special adapted piano
By Petra Jorissen
Playing music often is a severe struggle. Lots of professional musicians break down
under the burdens and stress placed on their neck and shoulders. There are all kinds of
adapted wind instruments like clarinets, baritone saxophones and trombones which make
music that is as ergonomically safe as possible. Sometimes the shape of an instrument
can be radically changed. Besides 'normal transverse flutes' there are for instance
transverse flutes, which look like a swan's neck. But what to do when you like to play the
piano and your legs are partially paralysed?
'I think it would be a good and a pleasure for you to play the piano' said Heleen's mother
one day. So a piano appeared in her house. And like many other children Heleen van
Tilburg started to play the piano at the age of ten. She liked it, but there was one
complication: Heleen was born with spina bifida and she can't use her legs very well.
In the beginning playing the piano was not such a big problem; the musical pieces were
quite simple and she did not have to use the pedals to muffle the sound. Heleen made
progress, the music became more complicated and now and then she had to use the right
pedal. She decided to use her left foot for the right pedal and she succeeded.
When Heleen got to her teens she was busy with many other interests and pleasures and
she went to university. Her student room was too small to house a piano, so Heleen
stopped playing.
She finished her study, found a job, earned money, moved to a bigger house and again
the desire to have a piano reared its head. In between she became a wheelchair user,
because walking became more and more difficult. She made her house suitable for her
wheelchair, and bought a new piano and again she started with piano lessons. This time
she was no longer content playing simple music without using the pedals, she needed a
challenge. The question was how to play Beethoven or Chopin sitting in a wheelchair,
without using the pedals?
For many technical problems there are solutions she knew and she decided to find one.
Ok, she could change her piano for an electrical one, but that was not what she wanted.
Her first step was a visit to a rehabilitation centre, which had a room for music therapy.
In the centre she found a special adapted piano. It was an heirloom and nobody knew
who had adapted that instrument. Instead of using one's feet for the pedals one could use
a special electric switch at one's arms. There was another mechanical solution: using a
special pedal with one's breastbone instead of one's feet. 'It looked like a torture
instrument' Heleen says. 'But playing is for fun and not to have a feeling of torture.' Her
second step was to have a look at the Internet. She discovered Michiel van Loon's
website, www.pianoman.nl. Van Loon is not only a piano tuner, he also manufactures
special adaptations for pianists with medical problems and he has connections with an
international network of piano technicians. When she met him the ball started rolling.
Van Loon looked at her possibilities, impossibilities and wishes and selected what was
the best Pedal Adapter for her. In the long run he created a special system concentrated
on Heleen's situation. The system consists of a solenoid (a linear electromotor inside the
piano), an operating system, a power supply and a special pedal stick. Besides those
special elements inside the piano there is another special instrument, a minuscule switch.
Heleen wears glasses. When she starts playing she puts a special designed hair slide on
one side of her glasses. Inside of that hair slide Van Loon has assembled a minuscule
electric switch, which is activated by tilting the head five degrees forwards. This switch
closes a low voltage current which in turn activates different special magnets in the
elements inside the piano to do their pedal work. The damper pedal can still be used on a
normal way, but preferably not simultaneously. Now, Heleen moves her head instead of
her legs when she uses the pedals.
The adaptation at first sight looks intricate, but some details of the adaptation are really
funny and simple. For instance the hair slide: a simple solution Van Loon bought at the
chemist at the corner of the street. The minuscule switch comes from an ordinary shop,
which sells construction materials.
If you are interested just have a look a www.pianoman.nl. At the Dutch site you can see
photos of the special elements van Loon used for the adaptation. Besides that you can see
Heleen playing her piano. If you want information just send a mail to Michiel van Loon.
The adaptation costs about Euro 1100. In Holland social security only pays when you are
a professional musician.
And what about Heleen? She plays the piano by fits and starts, especially classical pieces.
The pedals no longer are restrictions; she can play what she wants. At this moment one of
her favourite numbers is The Little Negro by Debussy. Sometimes she plays quatre mains
with a friend. And that really is great fun.
Proposal: Direct Payments for Assistive Technology
By Adolf D Ratzka, Ph. D., Director, Independent Living Institute, Stockholm, Sweden
(http://www.independentliving.org)
Plenary paper presented at the 7th European Conference for the Advancement of
Assistive Technology, "Shaping the Future," Dublin, Ireland, August 31st - 3rd
September 2003. Reprinted with permission from the author; originally published as
"From patient to customer: direct payments for assistive technology for disabled people's
self-determination" on the Independent Living Institute's website:
http://www.independentliving.org/docs6/ratzka200308b.html.
By way of a personal introduction, I have used assistive technology since 1961, when I
contracted polio in Germany. During 1966 to 1973, in the heydays of flower power and
Vietnam war protest, I attended the University of California. At least as important for my
personal growth and professional orientation was my scholarship which paid for tuition
and maintenance plus the goods and services I needed on account of my disability, such
as fellow students as personal assistants. When I needed assistive devices, I would check
the market, buy what I wanted, submit the bill and get reimbursed by the scholarship
agency. I bought, for example, a power chair that was my only chair for 22 years
accompanying me around the world. When I finally had to take it to the city dump, I
nearly cried.
Independent Living philosophy and principles
In the US, I came in contact with the Independent Living Movement that has since spread
around the world. We work for the removal of obstacles to self-determination and help
each other to take responsibility for our lives. Since we disabled people are the best
experts on our needs, we must take the initiative and show the solutions we want. (1)
Eliminating obstacles to self-determination
In Sweden, the movement influenced social policy in the area of personal assistance. In a
pilot project, we demonstrated that direct payments are more efficient, in terms of
consumer satisfaction and costs to taxpayers, than municipal homehelp services. Our
initiative shaped a national law which entitles persons with extensive disabilities to
monthly payments for personal assistance. Recipients are free to buy services from the
provider of their choice or to hire their assistants themselves. (2) In this way, assistance
users bypass the vested interests of local government service providers who had neither
the interest nor ability to improve the situation of service users. A whole new industry has
emerged with many alternatives, private and public, competing for the service users' cash.
Objects of care are thus turned into customers, dependence into freedom of choice,
powerlessness into purchasing power.
Present assistive devices delivery in Sweden
In Sweden and elsewhere, services still exist that force disabled people to accept
professional interventions that leave little room for individual needs, tastes and
preferences. Users of these services are forced to adapt their lives to the needs of the
service provider where often stereotypical assumptions about our abilities, interests and
life styles become self-fulfilling prophecies. (3)
One such service is the provision of assistive technology. An assistive device can
decrease or increase one's limitations. I kept my power chair for 22 years, because it was
simple, light yet sturdy - ideal for travel and adventure. One person could easily get me
up a tall curb, two persons could help me get up a staircase. This type of chair is no
longer available: the large rear wheels apparently are considered to be dangerous to my
safety. Power chairs with small rear wheels confine me to accessible environments such
as shopping malls and institutions. Thus, other peoples' assumptions about what is best
for me limit my mobility, deny me the dignity of risk-taking and question my ability to
act in my own best interest. Let us look at the mechanisms.
In Sweden, the provision of assistive devices is part of National Health Care. Devices are
distributed, adapted and repaired by Assistive Technology Centers run by the health care
system where patrons are commonly referred to as "patients". "Patient" describes the
relationship between end user and professional staff. In Latin, it means to suffer and wait.
"Patient" places us in the midst of the medical model of disability where disabled people
are seen as problem bearers, where professional training is valued higher than first-hand
experience, where disabled people are relegated to passive objects of professional
intervention. Patients have not much to say in the process. We can describe our needs,
plead for a certain solution, but do not decide. MD's, OT's and PT's - the prescribers - are
assumed to know better what we need.
Before entering the Swedish market, products have to pass tests which might, for
example, consist of a machine pounding a wheelchair seat a million times to test its
durability. User-oriented criteria are rarely included, for example, how a wheelchair
handles in tight corners or how easily a person seated in the chair can be helped up curbs
or steps - crucial criteria for users who need to live ordinary lives. Products meeting the
test criteria are entered in the "Good Assistive Technology" list. For many, but not all,
items on the list purchase contracts are negotiated by the procurement agency of Swedish
County Councils. The respective County's financial situation and resulting priorities limit
an Assistive Technology Center's freedom to choose still more. (4) Even if the Center's
OT agrees with me that I do need a new wheelchair, it is not at all certain that I get the
one I want or that I get a new one, if a used chair is in the Center's basement, or that I get
the item in this and not the next fiscal year.
In most markets, consumers by preferring a product over a competing one send direct
signals to producers and distributors about their preferences and, in this way, shape
product development. Not so in the market for assistive devices where the financing
agency's budget or prescribers' interpretation of their patients' needs replace market
forces. This might be one of the reasons why technological progress has been slow; why,
for example, shock absorbers are more common in bicycles than in wheelchairs.
In summary, end users of assistive devices in Sweden and elsewhere cannot directly
influence product development, have limited access to the multitude of products on the
global market, frequently do not use devices that would be optimal for their needs, are
frustrated and without control over an important aspect of their lives
Suggested solution
How can end users of assistive technology be empowered? How can we improve the
quality of our lives through better devices and better control? After 40 years of personal
experience, I am convinced that most of us would be far better off, if each of us, instead
of services in kind, received direct payments in the amount of his or her present AT costs
to the taxpayer.
I propose a feasibility study and a large-scale pilot project over a number of years in
order to test this hypothesis. Here are some of the features of such a project.
For assessing and monetarizing a person's needs, several models can be used and
evaluated in the pilot project, such as an individual's historical record of AT costs or the
average costs for users whose disability and life style are comparable. Whatever its
construction, the payment needs to cover not only costs for purchase, installation,
adaptation and service but also for the administration of the process..
Budget holders would be free to choose products and services, hire consultants including staff at an Assistive Devices Center - pick a device in a trade fair in Sweden or
on a website in the US, have it adapted and repaired locally or abroad.
In order to placate taxpayers, payments would need to be accounted for. Budget holders
must be able to save funds over several years to make rational long-term decisions.
What might be the results of direct payments? With "cash in hand" disabled people would
be recognized as customers. Product functionality and design, information and
advertising would be geared to our needs. Producers and distributors would receive
market signals directly from users resulting in more competition and innovation.
Websites, magazines, user groups and consultants offering information and advice would
enable users who take an active role in the provision of assistive technology. As educated
consumers many would be able to make choices in their best interest, in other words,
would take good care of what they would consider to be their investments.
Consumers and their organizations would devise a large variety of individualized
solutions regarding vendors, products, adaptation and maintenance. For the first time, it
would pay to use one's ingenuity, develop contacts and skills. Formerly frustrated,
embittered patients would turn into customers in control.
Doubts & questions
By now, many of you are shifting uneasily in your seats as you listen. Here, a few
comments regarding some of your doubts and questions.
Not all consumers of assistive technology would want to make use of the new
opportunities. Many older persons or individuals with newly acquired disabilities would
feel more secure with the old system. No problem: nobody would be forced to participate
in the pilot project. Besides, budget holders could hire their services from providers of
their choice including their old Assistive Technology Center, for some or all their needs.
The point is, we would have a real choice.
Liability for modified devices is becoming an issue of concern in Sweden. Users of AT
frequently are told that modifications are not possible, because the modifier would be
held responsible in case of an accident. I do not see a problem: liability insurance for
modifier is available. Its costs would be passed on to the users.
Would not the proposed solution increase costs for the taxpayer, when one of the present
system's advantages are lower unit prices which the County Councils presumably can
negotiate due to their immense contract volumes? My own experience and anecdotal
evidence from colleagues make me wonder. When I had to buy equipment with my own
money, directly from the distributor, I was asked whether the Assistive Technology
Center would buy the item for me or whether I would pay for it myself. In the latter case,
it was suggested, a better price could be offered. I have no way of verifying such a
statement.
When the electronic controller box for my wheelchair broke down, the Assistive
Technology Center sent it to the company which services all their electronic devices.
Nothing happened for 6 months. Upon my initiative, we found that the company was not
able to fix the box and had not bothered informing the Assistive Technology Center. At
this point, I asked that the box be sent, by special courier, for repair to its manufacturer in
New Zealand. Within a week I had the repaired box back. The total cost, including the
two courier bills, amounted to less than what the contract repair service in the Stockholm
suburb would have charged - if they'd been able to repair the box. This single incident is
not conclusive proof, but does illustrate how motivated end users can come up with
innovative cost-efficient solutions.
Today, in some countries, the AT market seems as infested with monopolies as the
European utility market before de-regulation. In my proposal, private and public, small
and large entities, companies providing the whole spectrum of services or one specialized
service would compete. Competition would bring down costs.
The biggest savings might be in the area of administration as consumers take over
functions, such as compiling information, comparing quality, negotiating prices, ordering
products and services, paying invoices, etc. The more functions they would take on, the
more mileage they would get out of their budget.
Finally, the most expensive device is the device not used. This cost would be greatly
reduced, if users were free to choose.
Obstacles
In the medical model of assistive technology, power is vested with the prescribing
professionals who will not easily give up their monopoly. Many might use arguments that
reflect the public's prejudices against persons with disabilities as helpless people who
cannot manage by themselves and need to be taken care of. How could they be entrusted
with considerable amounts of public monies! That was the argument in Sweden against
our pilot project with direct payments for personal assistance in the 1980's. Today, ten
thousand persons receive large monthly amounts and this is no longer an issue.
Citizenship model - the time has come
There is a new generation of disabled people now. We demand to be seen foremost as
citizens. We no longer accept that our lives are controlled by patronizing professionals.
Like other citizens today we demand to be able to make choices and take responsibility
for our decisions.
The citizenship model of assistive technology realizes that disabled people, in order to
achieve equal opportunities, not only need assistive devices but also must have full
control over this important aspect of their lives.
We will always need professionals with expertise, skills and emancipating attitudes - as
advisors but not as prescribers!
Footnotes
(1) For a definition of Independent Living, see Ratzka, Adolf "Independent Living: A
personal definition", internet publication URL www.independentliving.org/def.html
(2) Ratzka, Adolf "Independent Living in Sweden", internet publication URL
www.independentliving.org/docs6/ratzka200302b.html
(3) Ratzka, Adolf "User control over services as a precondition for self-determination",
internet publication URL www.independentliving.org/docs4/ar200210.html
(4) The description of the Swedish AT market is based on "Hjälpmedelsmarknaden i
Sverige (The market for assistive devices in Sweden)", Swedish Handicap Institute,
internet publication www.hi.se/omhjalpmedel/marknad/Marknaden.PDF
Brief Report of the First Seminar on Universal Design
The first seminar about universal design for students and experts in the field of
architecture, urbanism, traffic, design and law, organised by the Association of Disabled
Students of Novi Sad (Novosadsko udru?enje studenata sa hendikepom - NSUSH) ) in co
-operation with the Faculty of Technical Sciences, University of Novi Sad, took place in
Novi Sad City Hole on April 24 th , 2004. The project is supported by the Autonomous
Province of Vojvodina Executive board, the Fund for the 3 rd Sector Development of the
Autonomous Province of Vojvodina, the University of Novi Sad and the Faculty of
Technical Sciences, University of Novi Sad.
The goal of this seminar was to inform students and experts about different aspects of
physical accessibility and accessible information by pointing out national and
international regulations , their implementation, consequences and sanctions for not
respecting them , as well as the adventages of multidisciplinary approach in building an
accessible environment.
During the preparation period , NSUSH initiated contacts with the European Concept for
Accessibility Network (EuCAN) and collected various national, European and American
standards and regulations as well as the concept of universal design development report
by a team of the Norwe gian State Council on Disab ility from 1997. NSUSH received
the European Concept for Accessibility manual created in 2003 from EuCAN Office in
Lisbon. Most of these texts are now accessible in the Serbian language. About 200
English and French pages have been translated for this occasion and collected in a sort of
textbook that was forwarded to University libraries, institutions for design and building
and to organisations of people with disabilities whose representatives attended the
programme.
The seminar was opened by the subdean for science and international cooperation of the
Faculty of Technical Sciences, Janko Hodolic, Ph.D. and NSUSH representative and by
reading the support letter of Mr Jorgen Grunnet, the Council of Europe representative in
Belgrade, which represented the Council of Europe strategy, as well as the steps and
activities about the people with disabilities' position in Europe. Then, the following 8
topics were presented:
• Milica Mima Ruzicic (NSUSH) Approaches to (Models of) Disability - from Ramps
for the Disabled to Universal Design
• Miodrag Pocuc (NSUSH) Situation in the Environment from the Accesibility Aspect
• Damjan Tatic, M.A. (Center for Independent Living of Serbia, Belgrade) Legislation
and Standards of Accessibility
• Milica Mima Ruzicic (NSUSH) Accessibility for All... Design for All, Universal
Design - Theoretical Standpoints, Centres, Programmes
• Aleksandar Bogdanovic (USH Belgrade) Access to Information
• Alen Sajfar (Resource Centre for the Disabled People of the Ecumenical
Humanitarian Organisation) Life Tool Equipment: Characteristics and Experiences
• Miodrag Pocuc (NSUSH) Construction and Constitution of Traffic Planning and
Access to Buildings
• Ljiljana Vukajlov, M.Sci. (Faculty of Technical Sciences, University of Novi Sad)
Universal Design in Architecture
During the lunch break a short presentation was made of The Dictionary of Disability:
Towards Equality in Public Speech by Milica Mima Ruzicic (Novi Sad, 2003)
Participants
There were 65 participants: 43 students (15 students of the Faculty of Technical
Sciences), 5 professors and professor assistants, 7 representatives of institutions and
organisations for design and building, 1 representative of the Secretary for Sciences and
Technological Development of the Autonomous Province of Vojvodina Executive Board,
3 representatives of people with disabilities organisations from Novi Sad, 1 journalist and
2 French and English translators and 2 sign language interpretors, project associates. All
participants expressed their satisfaction with the programme. 10 of them highlighted its
organisation and expertise of the lecturers; the technical organisation was awarded with
4.55 on the scale between 1 and 5.
Some 30 participants received the information about the seminar from NSUSH members
and from those who work on its programmes and project. The rest were informed by the
organisations they work for or by NSUSH invitation letters and posters. Most of them
suggested more efficiant information spreading about such events, less text and more
concrete material for participants. They were interested in topics, possibilities of
receiving new information and knowledge. The most important topics were Construction
and Constitution of Traffic System and Access to Buildings, The Access to Information
and Universal Design in Architecture . The usefullness of the topics was graded with
4.72. The most interesting way of presentation were made by Miodrag Pocuc, Ljiljana
Vukajlov and Milica Mima Ruzicic. The participants would like to have more
information about the same topics, and particularly about the positive solutions to
accessibility problems, about legislation and what has been done in this field in Novi Sad.
The accessibility of the seminar was marked with 4.40. This shows that the participants
are more aware of what accessibility is. Besides, there still remains a lot of work to be
done because there is still not a single public building in Novi Sad which provides all the
elementary accessibility conditions. Considering all these facts, the general grade of the
seminar was 4.64.
Results
During the seminar the importance of the following was highlighted:
1.
To spread the concept of universal design;
2.
To introduce this topic into the curriculum of the Faculty of Technical
Sciences and the Faculty of Law;
3.
Multidisciplinary work of experts in the fields of arhitecture, planning, design,
building, traffic and legislation along with the participation of different groups
of citiizens in order to improve the experts' knowledge and to include
different needs of citizens at the very beginning of the planning process
connected with this;
4.
Systematic approach to planning, design and construction of buildings and
surroundings along with constant evaluation of quality, functionality and
5.
continuance for achieving equal conditions and possibilities creation for
designing objects, products and services, and
Connecting the institutions, experts' associations and organisations that
represent the different groups of citizens to co-operate in this field.
Plans
NSUSH plans to initiate negotiations with the Faculty of Technical Sciences and the
Faculty of Law, University of Novi Sad, for introducing accesibility and universal design
into the regular curriculum in June, introducing the concept of universal design in
planning at University level, and starting cooperation with local and provincial
organisations and institutions who deal with this issue.Therefore, there is a need to
translate the European Concept for Accesibility into Serbian during this summer and to
start cooperation with the Council of Europe's Belgrade office in spreading and
implementing this concept throughout Serbia.
Association of Disabled Students of Novi Sad (NSUSH)
Association of Disabled Students of Novi Sad
Faculty of Low
Trg Dositeja Obradovica 1
21000 Novi Sad
Serbia and Montenegro
Tel/fax +381(21) 350-377 Ext. 374
e-mail: nsush@pf.ns.ac.yu
New Online Course on "Building Careers in Design"
By Elaine Ostroff, Adaptive Environments
This is to introduce you to a new online course, 'Building Careers in Design' that we hope
you will promote to colleagues, especially vocational and career counselors in your area.
The course will benefit counselors by enabling them to better serve the employment
needs of people with disabilities through the development of quality careers in a range of
design fields. This 6-week 30 CRC credit course begins June 21 and is offered through
the Interwork Institute of San Diego State University, in cooperation with Adaptive
Environments, Boston, MA. The course fee is $175. For more information, see
www.careersindesign.org.
The course had a very successful pilot in cooperation with the VR agencies in California,
Massachusetts, North Carolina, and Oregon. Counselors applauded the in-depth content,
access to successful designers with disabilities, and easy to use online resources that
enabled them to assess interests and develop well-documented IPEs. The course was
developed through a contract with the RSA National Vocational Rehabilitation Technical
Assistance Center and is part of 'Building Careers in Design,' a web-based technical
assistance project that includes extensive web resources for consumers, counselors,
human resource personnel, and families.
The project intent is to encourage people with disabilities into careers in the design fields,
including architecture, landscape design, web design, urban design, and industrial design.
Design fields are often overlooked as career options for people with disabilities. A
printable flyer that you can use is available online at: www.careersindesign.org/flyer . For
more information contact Kristin Schneider at 617-695-1225 ex 35 or
kschneider@AdaptiveEnvironments.org.
Employment
Disability Employment Strategy in Afghanistan
By Majid Turmusani (Turmasani@hotmail.com)
Disability profile
The transitional administration in Afghanistan is ending its term in office this summer
and a democratically elected government will mark a new era in the Afghan political
scene. This will hopefully allow a more stable and steady development process to take
place. The current government made every effort to promote comprehensive development
process where all sections of society especially minority groups are included. However,
despite these efforts, disabled people, especially rural disabled, women and children were
left out of national programs as priority issues. The majority of these disabled people
continue to live in poverty and deprivation.
Currently, there are few provisions made available for disabled Afghans to help their
social and economic integration. Physical and attitudinal barriers prevent many disabled
people from receiving various services and further restrict their access to information and
education. Instead of creating enabling conditions for empowerment, existing barriers including policies and practices - often create a hindrance towards the inclusion of
disabled people into mainstream society.
Together, this perpetuates the passivity of disabled people and leads to their
marginalization and exclusion. The lack of employment options and other sources of
income are severely hindering disabled people's independent life and restrict their choices
and chances, thus leading to a low quality of life.
Disabled Afghans and the labor market
A recent survey conducted by the Ministry of Labor and Social Affairs (MLSA) and the
International Rescue Committee (IRC) has found very high level of unemployment
among disabled people estimated at 84%. The same study has found that most services
for the disabled population are mainly centered in big cities, especially in Kabul region.
Overall, there were limited vocational training options for disabled people and only
NGO's were active in employing disabled people. There were however individual cases
of self-employment projects run by disabled people.
The working group on employment on the other hand, has carried out an investigation
into the employment of disabled people for the purpose of policy development under the
Task Force on Disability [1]. They have found out that the majority of disabled people
are out of the workforce and that they often lack the skills and the confidence to access
the labor market.
In February 2003, a major consultation exercise into the needs and priorities of disability
sector under the auspice of Ministry of Martyrs and Disabled (MMD) and the United
Nations was organized. During the two day meeting, stakeholders were in active
discussion with the disabled community on the priorities of the disabled community, gaps
and barriers confronting disability sector in Afghanistan, and the way forward for the
development of this sector in a manner that meets disabled people's expectations.
Partners identified priority needs for interventions including the need to support disabled
people's organizations and groups, the need for capacity building of MMD to become
lead agency on disability, the needs for education and higher education, the need for
training and vocational training, the need for employment, the need for accessibility, the
need for physical rehab, the need for psycho-social rehab for traumatized people, the
need for information and legislation and the need for various kinds of research. Most of
the above identified needs are in line with those listed in the Millennium Framework for
Action towards an Inclusive, Barrier Free and Rights Based Society for Persons with
Disabilities in Asia and the Pacific (BMF).
A mapping tool for service providers shows that physical disability is relatively better
served than other disabilities and that service concentrates in the centre city of the
regions. This leaves many provinces especially in central, eastern and southern zones
without services. Overall, rural disabled people continue to be severely excluded from all
kinds of disability support. People with invisible disability had better integration records
compared with their visibly disabled counterparts.
Meeting the above needs will directly or indirectly improve the employability situation of
all disabled people. This includes not only war disabled as it is often the case in
Afghanistan, but also deaf people, blind people, those with psychiatric disabilities, those
with mental 'retardation', those with learning disability, and those with multiple
disabilities. Currently, employment and vocational training appeared to be weak and
insufficient and therefore needing to be strengthened. The provision of an effective
information system for disabled people will help meeting their needs and protecting their
rights.
Government strategy
The government of Afghanistan has assigned the responsibility of employing disabled
people to the Ministry of Labor and Social Affairs. MLSA attempts to address this
nationwide problem by developing internal regulations for the employment of disabled
people. In their internal regulations for example, MLSA has recently emphasized the
need for the vocational training of all disabled people as well as their need for welfare
benefits and employment. Historically, MLSA has also addressed the issue of
employment for disabled people, but only concerning war victims. The long years of war
with large numbers of war veterans have necessitated special provisions for war disabled.
People with other types of disabilities were as a result often excluded.
The Comprehensive National Disability Policy (2003) has developed specific guidelines
for training and employment of disabled people. The policy emphasized the equal right of
disabled people to decent work based on their abilities. Some disabled people however,
may require rehabilitation services including assistive devices, vocational training or job
modifications. These should be accessible to all people without discrimination. All
employment support initiatives for persons with disabilities must respond to a genuine
market need. Disabled women, who face compounded challenges in relation to mobility
and other social issues, require specific vocational rehabilitation and employment policy
strategies, in line with general government policy commitments to raise the social status
and improve the living conditions of women in Afghanistan.
Despite this policy, little progress has been made regarding the employment of disabled
people in Afghanistan. An employment strategy with roles and responsibility of each
party is still missing. The absence of an employment strategy in Afghanistan meant that,
standard employment support identified in the United Nations' Standard Rules for the
inclusion of disabled people was ineffective if existing at all. Employment guidance and
direct job placement, employment creation, vocational training, small business
development, rural employment, well-equipped, safe and productive workplaces, and
discrimination research were all missing in fact.
Future challenge
The two major problems confronting disabled people and limiting their economic
inclusion in Afghanistan are lack of skills together with an inaccessible environment.
Training and vocational training are necessary requirements for skills development.
Accessibility however, is prerequisite for all indoor or outdoor activities. Accessibility
means more than just the built environment. It means accessible working place,
accessible employer/peer attitudes and accessible communication system for all kind of
disabilities.
Currently, the employment of disabled people lies within three different ministries. The
Ministry of Public Health assesses the degree of disability and the ability of a given
person to work. MLSA holds overall responsibility for provision of employment
guidance and direct job placement, but there are no working mechanisms at MLSA to
realize such responsibility. The Ministry of Martyrs and Disabled identifies training
needs for disabled people and raising awareness of disability issues. However,
coordination between all three ministries is not effective and this leaves many job seekers
out of proper employment support services. At the moment, there is no lead agency
where disabled people could obtain employment referral information or related advice.
A participatory strategy is needed to highlight and address this inequality in the
employment of disabled people. At the macro level, the strategy must address the power
relations within the development process towards disability being considered as a crosscutting issue in all governmental programming. The strategy will therefore focus on
identifying barriers that prevent disabled people access to employment and propose ways
to increase labor participation. In so doing, the strategy will promote the acceptance of
disabled people's rights to full participation.
A working strategy must provide specific guidelines for key actions with time frame and
roles assigned to partners. Disabled people organizations and the National Disability
Commission, together with MSAL, MMD, and other line ministries have central role to
play in the implementation and monitoring of this strategy. Hence, the strategy will c
reate conditions to broaden the range of employment and economic development options
for disabled people in order to narrow the income gap between non-disabled and disabled
people. This should include early return-to-work programs as well as sheltered
employment and public, self and private options of employment. A positive action in
favor of employing disabled people may also be put in place to address equity concerns
and that positively discriminate in favor of disabled people in order to build the
representation of disabled people in the workforce.
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.
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.
MLSA (2003) Internal Regulations for National Employment. Kabul: Ministry of Labor
and Social Affairs.
MMD (2003) The Comprehensive National Disability Policy. URL:
www.disabilityafghanistan.org
Oliver, M. & Barnes, C. 1998. Disabled people and Social Policy: From Exclusion to
Inclusion. London: Longman.
UN (1994) The Standard Rules on Equalization of opportunities for Persons with
Disabilities. NY, UN.
Wardak, A, Faiz IM, and Turmusani, M (2003) Disability policy development in
Afghanistan: towards barriers free society. UNESCAP, Bangkok.
Notes
[1] The Task Force on Disability has set up various working groups on education,
rehabilitation, employment, and others. These working groups conducted small scale
disability research for the purpose of policy development. Findings were used in the
Comprehensive National Disability Policy in Afghanistan completed in November 2003.
Developing Entrepreneurship Among Women with
Disabilities
Review by Corbett Joan O'Toole (corbetto@earthlink.net)
"Doing Business in Addis Ababa: Case Studies of Women Entrepreneurs with
Disabilities in Ethiopia" by Ethiopian Federation of Persons with Disabilities &
International Labour Organization (ILO). Published by International Labour Organization
(ILO) (2003)
Available from ILO local offices or direct from ILO Publications, International Labour
Office, CH-1211 Geneva 22, Switzerland. Catalogs or lists of new publications are
available free of charge from the above address or by email: pubvente@ilo.org or
website: www.ilo.org/publns
Did you know that a number of hard-working women with disabilities in Ethiopia have
also been smugglers? Or that women who had leprosy are the most impoverished of the
micro-entrepreneurs in Addis Ababa? Or that massage is a prized employment skill?
In 2001 the International Labour Organization working with the Ethiopian Federation of
Persons with Disabilities (EFPD) and the Tigray Disabled Veterans Association (TDVA)
began a project to "to promote economic empowerment among women with disabilities
and women with disabled dependants, by providing training in micro-enterprise skills,
arranging access to vocational skills training and credit and supporting the women to start
a business activity or develop an existing one." Before they began to develop the
curriculum, they wanted to assess the current state of micro-enterprise for women with
disabilities. EFDP and TDVA sought out stories from women with disabilities who were
already running micro-businesses. The resulting booklet "Doing Business in Addis
Ababa: Case Studies of Women Entrepreneurs with Disabilities in Ethiopia" is a
fascinating and thorough picture of the challenges and successes of women with
disabilities in both urban (Addis Ababa) and rural (Tigray Region) communities.
The booklet is divided into six sections: one each on "women with visual impairments,
women with hearing impairments, women with mobility impairments, women who have
had leprosy, and mothers of children with learning disabilities." Within each section there
is a brief introductory summary followed by 5 case studies.
While nearly all the women were very poor and struggling financially, they had all
successfully transitioned from being dependents of other family members to, in nearly all
cases, becoming the primary financial support for their extended families. Many of the
women in the book were unable to attend school or stay in school and many were
illiterate. Yet the women profiled were industrious, patient and had justifiable pride in
their work and their ability to support other family members. It is interesting that the
editors chose to lead each chapter with the most economically successful of the women
profiled.
In the chapter on women with visual impairments, all of the women were very old by
Ethiopian standards. They were all over age 40 in a country with a life expectancy for
women at 45 years. Many had previously worked (at home or outside the home) before
settling into their current self-employment. None of the blind women have mobility aids
or mobility training which limits their options.
Ayinaddis Wondimneh
In a successful, but structurally typical, story, Ayinaddis Wondimneh grew up in the
countryside. She says "I was considered to be good for nothing, so I decided to leave all
earthly things behind and become a nun." But on the way to Addis Ababa she met a
smuggler and began her own smuggling career. She smuggled second-hand clothes from
Addis Ababa to Harar and then took berbere (hot pepper seasoning) and teff (grain) on
the way back. She traded her pay, in silver dollars, to the silver dealers in Gore, near the
Sudanese border where the exchange rate was higher.
She saved half of her earnings from each job and eventually set up a food and tela
(Ethiopian barley beer) shop in her neighborhood. She also began doing massage, which
her grandfather had taught her, as a way to supplement her income. Ten years ago she
began to focus her work on massage and charges people what they can afford to pay. She
averages 20 clients a day, supports a family of 8 people and earns 700 birr (around
US$80) a month.
Tiruwork Hussen
When her parents died, Tiruwork was sent to live at the Ziway children's home. She was
the only deaf student there and although she lived there from age 5 to age 10, she had a
hard time since no one could communicate with her.
After she left school, Tiruwork began to paint and make figurines using clay casts. She's
had a year's training in painting figurines and then began her own figurine business. She
can make up to 25 figurines in a day.
Like many deaf women, Tiruwork works in the arts. Other deaf women plait hair, make
coffee pots or tailor clothing. As a group, they are the most integrated into mainstream
society of all the disabled women interviewed.
Tiruwork works from dawn to dusk five days a week and studies painting in her spare
time. On Sundays she takes religious lessons. She sells her work at local bazaars and
friends in the shoe shine business take her work along with them to sell. She earns 300
birr a month (around US$30). Because she was raised in institutions and currently lives in
one, she does not support a family. She notes: "My work gives me the money I need to
improve my skills, to buy clothes and raw materials. I do not need support from other
people."
Ayelu Basha Bedasa
Ayelu is a very unusual woman. Not yet 20 years old, she runs a weaving business
(usually a man's job) and employs four male weavers. She built her business with training
from the Cheshire Foundation, putting a percentage of her apprentice money into savings
and taking a loan from the Cheshire Foundation.
Disabled from a fall as a young child, Ayelu moved from her rural area of Selale to Addis
Ababa to live with her aunt. She did not attend school and in adolescence became a maid
earning between 25-50 birr a month.
When she looked at the vocational training program, she decided on weaving. Her story
reflects her dedication and her strong spirit.
"In Ethiopia, most women would not dare to think about weaving, let alone do it because
it is men's work. On top of that, most weavers earn enough for only a hand-to-mouth
existence. But what other training could I take? I was illiterate at that time. I felt that of
all the types of vocational training available to me then, weaving would be the easiest. I
knew that other people could make a living from it. I never imagined that weaving could
be profitable, could make me so proud and self-reliant. And being self-reliant makes me
happy. It gives me peace."
At the end of her training, she had saved 300 birr. She took out a loan for 200 birr and
started her own weaving business. She has repaid the loan and has been completely selfsufficient for over 2 years.
Ayelu sells her three-colored checked shawls to wholesalers in the main market and buys
the next week's raw supplies. Like many other women with micro-businesses, she cannot
buy supplies in bulk because she has no place to store them.
She focuses on the quality of her shawls and has built a successful business. She is
hoping to get another loan and expand her business.
She sends most of her money to her family back in Selale which supports her parents and
six siblings. She is putting herself through school at night and is currently in third grade.
Ageritu Ayalew
Like many women who have had leprosy, Ageritu is not married. Her family married her
at age 13 but when she got leprosy a few years later, her husband's family arranged for a
divorce that she did not want.
Leprosy is a treatable disease with a specific multi-drug treatment. But many people in
Ethiopia subscribe to myths that assign the disease to "bad spirits" and most people with
leprosy are not educated and their only work option is begging.
Ageritu went to the All-Africa Research and Training Center (ALERT) Hospital in Addis
Ababa seeking treatment. Although she was given a prescription for leprosy drugs, she
was unable to get them because her rural pharmacy did not stock them. Eventually she
was forced to return to Addis Ababa.
She began to work initially as a nanny to a nurse's family. The nurse was very worried
that Ageritu would spread leprosy to her children. "She told me not to touch the children
with my bare hands and never to put them on my shoulders or hold them close to my
neck." Ageritu reports. "I always did what I was told but she hurt my feelings. I cried all
the time."
Ageritu left that job after the washing duties caused her hands pain. She then became a
day laborer hauling stone. Finally, desperate that she would become a beggar, she got teff
(grain) and wheat on credit and began to make injera. Injera is a staple of every Ethiopian
meal. It is a spongy, slightly sour bread that serves as the "plate" as well as the "utensils".
A large, round piece of injera covers the placemat. The food is then placed on top of the
round injera. Other pieces of injera are used to pick up the food. At the end of the meal,
the round injera is eaten. Making injera is the second most common trade of all the
women after trading.
Ageritu, now 32 years old, runs a successful business selling injera, kindling and coal.
Her success has allowed her to purchase a heifer which she will use for milk and
breeding.
Mulumebet Eshete
Mulumebet was born in rural Ethiopia but was sent to live with her aunt in Addis Ababa.
Her aunt needed a servant, and since Mulumebet's family were poor, they had little
choice. Juggling work with night school Mulumebet eventually finished high school.
Mulumebet's daughter, Yanet, was born with a learning disability although she wasn't
diagnosed until elementary school. She tried putting her into school but the school was
unable to educate her so Mulumebet began to homeschool Yanet.
Mulumebet quite her job of ten years and began to embroider bedcovers by hand since
she doesn't have a sewing machine. Yanet blossomed with her mother's educational
attention. "At one time Yanet could not keep clean or play without the help of others,"
Malumebet recalls. "Now she is 13 years old...She goes to school with other children of
her age. I follow her progress keenly!"
Like other mothers of children with learning disabilities, Mulumebet has limited
opportunities since she must be home and available for her daughter. Mothers were also
the least likely to be satisfied with their work and most saw their lives as difficult.
Summary
The International Labour Organization, the Ethiopian Federation of Persons with
Disabilities (EFPD) and the Tigray Disabled Veterans Association (TDVA) have since
"carried out by disabled women business skills training courses for 400 women; market
surveys were conducted to provide information on innovative products and services
which the trainees might consider in develop their small business plans; access to microcredit; follow up support provided to the women, in the early stages of establishing their
businesses; and training in marketing through trade fairs." Other publications on this
work are available from ILO.
For information about the ILO Technical Cooperation Project, contact: ILO Disability
Programme, Skills Development Department (IFP/Skills), International Labour
Organization (ILO), 4, Route des Morillons, Geneva, Switzerland. Tel: +41 22 799 8276.
Fax: +41 22 799 6310. Email: Disability@ilo.org
Report of Gladnet 2003 Meeting on Employment
Research
Minutes of the Sixth General Assembly Meeting
International Labour Organisation (ILO) 4, route des Morillons Geneva, Switzerland,
December 8 - 9, 2003
Attendance
The sixth Annual General Meeting of the Global Applied Disability Research and
Information Network on Employment and Training - GLADNET - was held at the
International Labour Organisation's (ILO) offices in Geneva, Switzerland on December 8
- 9, 2003. Approximately 24 participants from 12 countries were in attendance.
Presentations - December 8, 2003
Transnational Comparisons of Disability Management Systems: In Search of a Robust
Policy Framework, presented by Dr. Donal McAnaney, Director, Rehab Group Roslyn
Park, Dublin, Ireland
Business Owners with Disabilities: A Study of Persons with Disabilities Starting their
own Business, presented by Dr. Stig Larsson and Amanda Bentsson, Malmo University
Hospital, Sweden
Performance Indicators in Public and Private Re-employment Service Providers,
presented by Edwin de Vos, Senior Consultant / Researcher, TNO Work and
Employment, Hoofdorp, The Netherlands
Integration Management: New Approaches on Dealing with Disability Matters in
Companies, presented by Dorte Bernhard, University of Cologne, Germany
Evaluation of a Re-integration Program for Clients with Psychological Problems in the
ICT Domain, presented by Viktoria Arling and Will Spijkers, Institute of Psychology
Department of Vocational Rehabilitation, University of Aachen, Germany
Mental Health and Work: The Extent of Evidence-based Knowledge, presented by
Aldred Neufeldt, Director, Community Rehabilitation & Disability Studies, University of
Calgary, Canada
Presentations - December 9, 2003
Current Practice in Skills Acquisition for People with Disabilities, presented by Barbara
Murray, Manager Equity Issues Skills Development Department (IFP / Skills),
International Labour Office, Geneva, Switzerland
The Mainstream Business Benefits of designing more accessible Electronic and
Information Technology (E&IT), presented remotely by Steve Jacobs, President, IDEAL
Group Inc., Ohio, USA
Presentation des basses de donnes Francophone sur le handicap du CTNERHI disponible
sur l'Internet, presented by Marc Maudinet, Director Centre Technique national d'Etudes
et de Recherches sur les handicaps et les inadaptations (CTNERHI)
How is the Internet Affecting the Lives of Disabled People?, presented by Dr. Michael
Floyd, Rehabilitation Resource Centre School of Nursing, City University, London, UK
Information Technology Accessibility: Implications for Education and Employment of
People with Disabilities, presented by telecast by Susanne Bruyere, Director, Program on
Employment and Disability, School of Industrial and Labor Relations, Cornell
University, Ithaca, New York
The Global Information Network on Disability: a Tool to share Knowledge for
Sustainable Livelihoods, presented by Moira Jones, DIrector, Disabled Peoples
International (DPI), Winnipeg, Canada
GLADNET Association General Assembly In attendance: Aldred Neufeldt, GLADNET
Chair / University of Calgary Stig Larsson, Lund University Amanda Bentsson, Lund
University Moira Jones, Disabled Persons International Dorte Bernhard, University of
Cologne Michael Kamp, Stichting Zuidwester Bert Boekhoff, Stichting Zuidwester
Barbara Murray, International Labour Organization Donal McAnaney, Roslyn Rehab
Edwin de Vos, GLADNET Secretary-Treasurer / TNO Misako Nomura, DINF Japan Val
Lawton, GLADNET Operations Manager
The GLADNET Business meeting was held from 14h30 to 15h55 on Tuesday, December
9, 2003.
Opening Remarks Dr. Neufeldt welcomed everyone to the 6th General Assembly
meeting, and thanked the ILO for their support and generous hospitality in hosting this
conference and General Assembly. He observed that an AGA was not held in 2002 due to
the cancellation of the Paris meeting, with which GLADNET had hoped to run a
concurrent meeting. The net effect of this is that there are actions that will require
ratification at this meeting.
Dr. Neufeldt informed the audience that this would be the last time he addressed a
GLADNET meeting as Chair, a position he has held since 1997.
Report on Activities
1. An Annual report, including the report from the Chair, the Operations Manager, and
the Auditors, covering the years 2002-2003 was made available to meeting participants.
The Annual Report is available for viewing on the GLADNET website.
2. Edwin de Vos' Report on Programme Planning. Edwin reviewed planning leading to
programme just concluded. It was observed that while the attendance was low and, hence
disappointing, the quality of presentations and participation had been excellent.
3. Discussion of meetings attended by GLADNET representatives over the past two
years, as outlined in the Annual Report. These efforts worked at aligning GLADNET
with partners.
Auditor's Report and Financial Report Edwin de Vos, Treasurer, presented the Auditor’s
Report for the year 2002. He also presented a summary report on revenue and expenses
through October 2003.
Barbara Murray observed it would be helpful to have a breakdown of general revenue
into various main sources such as funds received for the recent ILO project, other grants
and contributions, rather than grouping these sources. She also suggested it would be
helpful to know how much interest income there had been as contrasted with the previous
year.
Concern regarding dropping membership was voiced. Michael Kamp inquired as to what
the reasons for this might be. Edwin de Vos suggested that many organizations have
fallen on harder times, and some have disappeared entirely. While maintaining
GLADNET membership is a continuing challenge, Aldred Neufeldt suggested
GLADNET might consider offering a specific service to governmental bodies in
exchange for sustaining memberships.
Motions 1. Motion to accept the Auditors Report
Moved by Donal McAnaney, seconded by Michael Kamp. Carried.
2. Motion to accept the Operation Manager and Programme Reports
Moved by Michael Kamp, seconded by Donal McAnaney. Carried.
3. Motion to retain the services of the current auditor
Moved by Bert Boekhoff, seconded by Donal McAnaney. Carried.
4. Motion to ratify appointments to Board made during the previous year.
Moved by Bert Boekhoff, seconded by Michael Kamp. Carried.
5. Motion to elect new Board Last year the GLADNET Board began seeking a broadened
membership from a wider range of regions, and bringing number up to the allowable
limit as set out in the By-Laws. A slate of nominees was circulated.
Chair solicits discussion of Nominees
There being none, it was moved that the slate be adopted in a single vote.
Moved by Michael Kamp, seconded by Barbara Murray. Carried.
Elected to: First term (3 years) Buys, Nick (alternate-Graham Hughes), Australia Jones,
Moira, Disabled Peoples’ International Larsson, Stig, Sweden McAnaney, Donal,
Ireland Zeitzer, Eileen, USA
Second term (3 years) Kawamura, Hiroshi, Japan
Third term (3 years) Berkowitz, Monroe, USA
The following were ratified as Continuing Board Members with terms as shown:
Beckles, Beverly Second term began in 2002 Bruyère, Susanne Second term began in
2002 DeVos, Edwin Third term began in 2002 Murray, Barbara Ex-officio Neufeldt,
Aldred Third term began in 2002
Meeting interrupted to present Aldred Neufeldt with a rose wood clock, in recognition of
his tenure as GLADNET Chair from 1997 to 2003
Meeting resumed at 15h25
Program discussion
1. Next meeting. Comments for GLADNET's new board regarding the program for the
association's next meeting, were sought.
Barbara Murray believes that to achieve higher attendance, planning for the next meeting
must begin immediately. GLADNET should aim for greater promotion so people can slot
in the meeting for the new year. She suggests inviting a well-known speaker could be
worthwhile.
A renowned speaker could be a costly initiative, however, it was suggested by Val
Lawton, he / she could provide a telecast presentation.
Stig Larsson: believes that presenting applicable research would be more appealing to
some than bringing in a renowned speaker.
Moira Jones: would like to see greater involvement from PWDs, especially from
developing countries.
The chair solicited comments regarding travel costs
Moira Jones: pointed out that there are often monies available for travel for developing
countries.
Michael Kamp: with adequate planning ahead, GLADNET may be able to better tailor its
program according to upcoming / current research
Moira Jones: recommended GLADNET consider the Summit in Winnipeg, Manitoba
(Canada) as a good venue. PWD's will be in attendance, and Disabled Persons'
International (DPI) could assist GLADNET.
Discussion concerning next year’s programme content
Barbara Murray: presentation by someone who's made a controversial statement in the
field, such as the recent OECD study, which holds some influence over policy makers
but, as in the OECD study, is questionable.
GLADNET as a network has a responsibility to respond to such reports, and have the
potential to reach policy makers.
Edwin de Vos: more studies of this sort will surface in the next year. He pointed out that
it is not just conference that is a membership service; the Infobase, GLADMail and the
promotion of networking research. The question is how to make GLADNET service
useful? What should the GLADNET role be? How can GLADNET promote research
together with others?
Michael Kamp: is there the possibility of GLADNET being a portal to show where
researchers to go -- A place where new research is compiled and posted to members?
Aldred Neufeldt: How can GLADNET address the information overload, and 'weave
through the noise' on behalf of membership?
Misako Nomura: Speaking from a Japanese perspective, GLADNET is not well
publicized enough.
Aldred Neufeldt: Perhaps GLADNET needs to promote its excellence and quality;
proposes establishing a public relations campaign
Dorte Bernhard: recommends collaborating with others to disseminate GLADNET news
and activities.
Barbara Murray: suggests identifying a topic, such as the "trend to privatization," and
surveying the membership for feedback and opinion.
Stig Larsson: agrees on Barbara’s suggested topic, but suggests, due to lack of research in
the area, that such a meeting might be held as a series of workshops.
Barbara Murray: suggests the OECD Report is a partial piece of research that justifies the
trend to PWDs looking after themselves. With a year's notice, we may prompt initial
research. At least, GLADNET can foster informed discussion.
Aldred Neufeldt: reminded participants that the OECD and ISSA reports were considered
for critical analysis for today's meeting
Barbara Murray: suggests new board members Ilene Zeitzer would make an excellent
discussant. Additionally, the Australian experience would be good to highlight.
Edwin de Vos: another topic the association might consider is 'anti-discrimination
legislation in Europe,' for which there is a research available.
Bert Boekhoff: These two topics work well together, and could both be presented at the
same meeting. Recommends presenting both to board and membership.
Dorte Bernhard: questioned GLADMail statistics
Val Lawton: currently, there are approx. 800 GLADMail recipients. GLADNET might
consider establishing a threaded discussion group this year.
Close
There being no new business, the meeting closed at 15h55 hours on December 9, 2003.
Carl Raskin Editor GLADmail Ottawa, Canada
Employment Nondiscrimination Policies and Practices
in the U.S. and U.K.
By Susanne M. Bruyère, Cornell University (smb23@cornell.edu)
People with disabilities are often greatly under or unemployed compared to their non-
disabled peers, despite the fact that approximately one person in six has a disability. This
disparity is a function of inequity that has permeated social policy, access to education,
training, and employment, as well as society's attitudes. To address this disparity, both
the United States (U.S.) and the United Kingdom (U.K.) have passed disability nondiscrimination legislation within this decade. In the U.S., the Americans with Disabilities
Act of 1990 (ADA) affords protections in employment, access to goods and services, and
public accommodations. The Disability Discrimination Act 1995 (DDA) provides similar
protections in the U.K. This research is based on the premise that the implementation of
the employment provisions of these pieces of legislation falls largely in the realm of the
functioning of human resource (HR) professionals. It is these professionals who are
responsible for the recruitment, pre-employment screening, and other workplace practices
that affect the hiring and retention of workers with and without disabilities. The purpose
of this research has been to identify how HR professionals have responded to this
legislation to date, and what further can be done to support their very critical role in
minimizing workplace discrimination for people with disabilities.
Study Background
Cornell University recently conducted surveys in the United States, Great Britain, and
Northern Ireland to assess employer response in each of these countries to their
respective employment disability nondiscrimination legislation. [1] Ten-page parallel
surveys covering issues dealing with the respective employment provisions of the
Americans with Disabilities Act of 1990 (ADA) in the U.S., and the Disability
Discrimination Act (DDA) in the United Kingdom were administered to the membership
of five different business organization membership groups. In the US, the survey was a
collaborative effort of Cornell University, the Society for Human Resource Management
(SHRM), the Washington Business Group on Health (WBGH), and the Lewin Group. In
Britain, survey collaborators were Cornell University, the Employers' Forum on
Disability and the Institute of Personnel and Development. The Northern Ireland survey
was a collaboration between Cornell University and the Employers' Forum on Disability
in Northern Ireland. The survey results reported here are based on the feedback of
approximately 1,900 U.S., Great Britain, and Northern Ireland employer representatives,
mostly HR representatives, since these were the largest member organizations surveyed,
and HR practice and employment disability nondiscrimination was the focus of interest.
Survey Results
Organizations' Accommodations/Adjustments Process
Many of the organizations surveyed are responding to their respective disability
nondiscrimination legislation by making accommodations/adjustments needed by
applicants and employees with disabilities, including being flexible in HR policies and
making existing facilities accessible to people with disabilities. In the U.S., the HR staff,
either alone or in combination with others, makes the final decision on accommodations.
In Great Britain and Northern Ireland, this decision is most often made by managers or
directors other than HR. When asked whether data was kept on accommodations/
adjustments, there again was a significant difference by country. In general, data is less
often kept in Northern Ireland (56 percent do not keep data on adjustments) and Great
Britain (35 percent of respondents do not keep data), compared to only 13 percent of all
U.S. respondents who do not keep data. Organizations from all three areas report
difficulty responding to requests to make information accessible for people with visual or
learning impairments and making information accessible for hearing impaired people.
British and Northern Ireland employers reported more difficulty with making adjustments
to medical tests to minimize discrimination of applicants with disabilities in the preemployment process. U.S. employers reported a greater degree of familiarity in the areas
of: framing questions to applicants about the ability to perform specific job tasks rather
than about the disability; restrictions on obtaining medical examinations and medical
history; restrictions on eliciting information on medical issues affecting applicants' health
and safety on the job; and knowing when to ask an applicant about how s/he would
perform certain job tasks. More British HR representative respondents than U.S. or
Northern Ireland respondents reported familiarity with adapting print materials used in
the interview process to large print, diskette, or Braille for applicants with disabilities.
Changes to Health or Other Benefits Due to the ADA/DDA
In the U.S., on the average, only one in ten reported change in long-term disability, shortterm disability, and life insurance policies as a result of the ADA. Greater change was
reported in Britain and Northern Ireland, in such areas as changes to absence
management policies (35 percent in Northern Ireland; 33 percent in the British
respondents), changes to ill health/sick pay policies, and pensions (approximately one in
five in each of these areas). It appears that much more significant changes are resulting in
Britain and Northern Ireland from absence management and ill health/sick pay policies,
than is currently occurring in the US in long-term and short-term disability policies.
Barriers to Promotion and Training for People with Disabilities
In both the U.S. and Great Britain, cost of training, supervision, and of
accommodations/adjustments for applicants or employees with disabilities are not seen as
significant barriers to the employment or advancement for persons with disabilities.
Northern Ireland respondents did see the cost of adjustments as a major barrier. The
highest reported barrier for the U.S. and Great Britain (and similarly high for Northern
Ireland) were in the areas of lack of related experience and lack of requisite skills and
training in the person with a disability. The next highest, similar across the three
respondent groups, was supervisor knowledge of how to make an accommodation/
adjustment for a person with a disability, and attitudes or stereotypes among co-workers
and supervisors. All three groups report that visible top management commitment is the
top way to reduce barriers for people with disabilities in the workplace. In all the
surveyed groups, the change most often made, but also seen as the most difficult to make
was changing fellow employee or supervisor attitudes toward the employee with a
disability. Wheelchair accessibility, time flexibility in test taking, and communication
access for people with hearing impairments were reported as the types of access reported
most often provided across countries to ensure that people with disabilities have equitable
access to meetings, promotional or social opportunities, and/or training.
ADA/DDA Personnel Training Conducted
U.S. respondents reported having conducted significantly more training in seven of the 12
listed areas. The area training was most often conducted across all groups was
nondiscriminatory recruiting (89 percent, 82 percent, and 60 percent respectively for the
U.S., Great Britain, and Northern Ireland). Second most often conducted for US and
British respondents was confidentiality requirements of the ADA and DDA (88 and 78
percent, respectively). An area which respondents from all country groups expressed an
interest in gaining further information on was accommodations/adjustments for persons
with mental health disabilities.
Resources Used to Resolve ADA/DDA Issues
Across all three groups, legal counsel or advisor was selected as the resource most often
used to resolve ADA/ DDA disputes, and alternative dispute resolution as a least used
resource. Respondents from all country areas identify print/video resources and onsite
consultation and technical assistance as the top two preferred mediums to address
ADA/DDA issues.
Presence of a Disability Management Program and Contribution to the ADA/DDA
Approximately two-thirds to three-quarters or more of respondents in each of the country
groups reported having formal or informal disability management, or return to
work/retention programs, and that such programs contribute positively to ADA/DDA
compliance.
Implications of the Study
People with disabilities still represent a largely untapped employment resource in many
countries around the globe, being often greatly under or unemployed compared to their
non-disabled peers. In the United States and the United Kingdom, employment disability
nondiscrimination legislation has been passed in an attempt to address this inequity. The
research described in this report is based on the premise that the implementation of the
employment provisions of these pieces of disability nondiscrimination legislation falls
chiefly in the realm of the functioning of HR professionals. HR professionals are
responsible for the recruitment, pre-employment screening and other workplace practices
that affect the hiring and retention of workers with and without disabilities. The purpose
of this research is to identify how HR professionals have responded to this legislation to
date, and what further can be done to support their very critical role in minimizing
workplace discrimination for people with disabilities. With a shrinking labor force in
some countries, and an increasing need for skilled labor in certain industries, it is timely
to explore effective recruitment and workplace integration of employees with disabilities.
Legislation such as the Americans with Disabilities Act of 1990 and the British Disability
Discrimination Act 1995 are significant legislative mandates to move us socially,
culturally, and economically toward a realization of employment equity for people with
disabilities. In addition, the increasingly global nature of enterprises necessitates that
human resource professionals become knowledgeable about evolving nondiscrimination
legislation that transcends cultural bounds, such as protections afforded persons with
disabilities. Knowledge of these requirements better assures that HR professionals are
operating in compliance with such legislation in their HR policies and practices. In
addition, however, structures and systems such as disability management and return to
work programs may not only assist in such ADA/DDA compliance, but even more
importantly contribute to minimizing the negative impact of disability and ill health on
employee wellbeing and overall organizational effectiveness.
Further Resources
Survey reports are available from the Cornell University web site at:
http://www.ilr.cornell.edu/ped/surveyresults.html
Bruyère , S., Erickson, W., & VanLooy, S. (2004). Comparative study of workplace
policy and practices contributing to disability nondiscrimination. Rehabilitation
Psychology, 49 (1), 28-38.
Chartered Institute of Personnel and Development (2001). The Change Agenda: Adapting
to disability - It Wasn't So Difficult After All. London: CIPD.
Collaborating Organizations
Employers' Forum on Disability
Employers' Forum on Disability
Nutmeg House
60 Gainsford Street
London, SE1 2NY
Tel: 020 7403 3020
Fax: 020 7403 0404
Minicom: 020 7403 0040
http://www.employers-forum.co.uk/
Employers' Forum on Disability in Northern Ireland
Banbridge Enterprise Centre
Scarva Road Industrial Estate
Banbridge, Northern Ireland
BT32 3QD
Tel/Textphone: (028) 4062 4526
Fax: (028) 4066 9665
http://www.efdni.org/
Chartered Institute of Personnel and Development (CIPD)
CIPD House
Camp Road, Wimbledon
London, SW19 4UX
Phone +44 (0) 20 8971 9000
Fax +44 (0) 20 8263 3333
http://www.cipd.co.uk/
[1] This research was funded by the US Department of Education National Institute on
Disability and Rehabilitation Research (NIDRR) for a Mary E. Switzer Distinguished
Research Fellowship (grant no. 72-0564834F) to Susanne M. Bruyère, Ph.D., Cornell
University, Ithaca, New York, USA.
Study Looks At Employment Rates of Illinois
Graduates with Severe Disabilities
By Devva Kasnitz (devva@earthlink.net)
The University of Illinois at Urbana-Champaign has long been known for its pioneering
programs and services for students with disabilities. Judging by results of recent studies
of employment outcomes for university graduates with severe disabilities, those programs
are continuing to make their mark. Recent survey responses from 94 Illinois alumni with
spinal cord injuries or disease (SCID) who graduated between 1978 and 2002 indicate
that 79 percent of graduates with paraplegia and 70 percent of those with quadriplegia
were employed. In addition:
• 92 percent had worked for pay in the past five years;
• 90 percent had graduate degrees;
• 73 percent had annual personal incomes greater than $35,000;
• 42.8 percent had annual personal incomes in excess of $50,000.
Brad Hedrick, the director of the university's Division of Rehabilitation-Education
Services and principal investigator for the study, said those figures contrast with a 2000
National Organization on Disability/Harris poll that indicated only 33 percent of
working-age persons with disabilities with college degrees were working full time for
pay, and 12 percent were working part time.
These data and others were presented by Hedrick and Tanya Gallagher, the dean of the
College of Applied Life Studies and the director of the Disability Research Institute, at
the Emerging Workforce Conference last month in Weston, Florida.
The conference included representatives from the National Council on Disability, the
Social Security Administration, the Ticket to Work and Work Incentives Advisory Panel,
the President's Committee for People With Intellectual Disabilities, the Access Board,
and the President's Committee for Purchase From People Who Are Blind or Severely
Disabled, and representatives from other federal, state and international entities.
The presentation by Gallagher and Hedrick focused on the strengths of the "Illinois
Model" for educating students with disabilities. The model, Hedrick said, "is born of a
holistic philosophy that includes academic, physical, social and psychological supports."
Among its many components, the Illinois Model includes intensive transitional
orientation for students on both ends of the collegiate experience -- as they move from
high school to the university, and later, from the university into the job market. Illinois is
one of only three institutions to offer personal-assistant services, which Hedrick said,
serve as a bridge --"between the mom-and-dad service" students with disabilities have
typically relied upon and the self-sufficient approach to the management of personal
assistants that they will need to
be successful following graduation." The program prepares students for self-sufficiency
by engaging them as full partners in the recruitment, screening, interviewing, hiring,
training, scheduling, payment and evaluation of their personal-assistant staff.
Sudents also receive training in self-advocacy, and are encouraged to participate in
seminars and/or to enroll in courses on the history and evolution of disability rights and
nondiscrimination laws. They learn strategies for improving their study and note-taking
skills as well as time-management and organizational skills. Students also are afforded
opportunities to take courses for academic credit to improve their information-technology
literacy and proficiency in the use of state-of-the-art assistive information technologies,
and to learn how to most effectively maximize their physical and mental health through
the pursuit of proper nutrition and exercise.
In addition to the survey results of alumni with SCID, Hedrick said another measure of
the success of the Illinois Model is the fact that only one percentage point separates the
graduation rate of Illinois students with disabilities from that of the campus at large.
"But nationally, according to a 1999 study by the National Center on Education Statistics,
students with disabilities are 15 percent less likely to graduate than their peers without
disabilities," he said.
Among the campus's alumni who lived at Beckwith Hall -- where they received personalassistant support services to perform daily-living activities, such as dressing, eating and
grooming -- 60 percent who graduated since 1995 obtained professional employment
following graduation, while 32 percent entered graduate school. Only 8 percent did not
enter the work force after graduation.
Hedrick said those outcomes were corroborated by a recent study by the university's
Office of Planning and Budgeting. That study found that 58.3 percent of former Beckwith
Hall residents who graduated between 1986 and 2000 were employed one year following
graduation.
RRTC E-newsletter
June 23 SET NET: Spinal Cord Injury and Employment Telecast
Spinal Cord Injury and Employment Telecast, June 23, 2004 -- 3:00 - 5:00 PM, ET. This
telecast is a live 2 hour training via satellite broadcasting with two toll-free question and
answer periods. The telecast will focus on information and strategies on employment
following spinal cord injury. Community re-entry issues that affect employment will be
examined: barriers; advancing technology; and Social Security Benefits and work
incentives. For more information & to register please read the brochure (PDF |
FlashPaper). For additional assistance, please contact Roberta Martin (804) 828-1851 |
rsmartin@vcu.edu
The Fifteenth Annual APSE Conference and Training Event
Register now for APSE’s national conference on July 11 – 14, 2004 in Indianapolis, IN –
Marriott Downtown. Don’t forget to register by June 13th for early registration fees and
reduced room rates. This conference is titled "At the Crossroads . . . Advancing
Employment in a Changing Landscape". The conference will provide an opportunity for
individuals engaged in supported and customized employment to share information,
sharpen their skills and re-ignite their commitment to the difficult task of advancing
disability employment in their own communities. Participants will enjoy quality speakers,
productive dialogues, formal and informal networking, and exhibitors of tools and
techniques to enhance employment outcomes and the lives of people with disabilities.
Find out more
Brown Bag Seminar: Seeking Mental Health Treatment - A Primer for African
Americans
In this seminar, Dr. Cherly Al-Mateen provides information related to cultural
competence and working with African American patients. She gives a definition of
culture and cultural competence and then talks about the potential effects of culture on
seeking mental health treatment, the mental health diagnosis, and treatment. Brown Bag
Seminar
T-TAP Online Seminar: Parent's Perspective on Customized Employment
In this seminar, Suzanne Hutcheson, with Tri County Tec, talks about her experiences
with working with parents. She discusses how she has gotten parents on board with
Customized Employment for their sons or daughters. Visit the online seminar to find out
more tips for encouraging parent's support in making employment the first choice for
their sons and daughters who have disabilities. Online Seminar
Telephone Training Series by TASH
The Future of Adult Services – Managing New Directions in Uncertain Times -- This is a
telephone training series by TASH. The sessions are part of the Adult Services Series,
and take place from 1:00- 2:30 PM Eastern Time (12:00 - 1:30 pm Central; 11:00 am 12:30 pm Mountain; 10:00 -11:30 am Pacific; 9:00 - 10:30 am Alaska). The upcoming
session is on "Creating High Energy Organizational Culture and Supporting an Incredible
Staff," by Lynne Seagle on Thursday, May 20th, 1-2:30, Eastern Time All Session
descriptions & Registration
Individuals who may need special accommodation should contact Katherine Inge at
kinge@atlas.vcu.edu or by phone at 804-828-1851, fax 804-828-2193, Funding for this
activity is provided by the United States Department of Education, National Institute on
Disability and Rehabilitation Research, Grant # H133B980036.
Governance & Legislation
Disabled People & Education in Afghanistan
By Majid Turmusani (turmasani@hotmail.com)
Setting the scene
This brief review explores the status of disabled people in terms of education in
Afghanistan. Given the absence of effective special education services in the country, a
number of NGO's have assumed the responsibility for providing special education
support for visually and hearing impaired people and more recently care at community
centers for those with mild intellectual disability. These services were often provided by
trained professionals within the special school based system.
This paper argues for a more political approach to disability with emphasis on tackling
the disabling barriers in society including a restructuring of education and higher
education policies towards inclusive education for disabled people at all levels. The role
of disabled people is essential in such a restructuring process including the issue of
definitions and who is considered to be disabled.
The latter aspect is central to the development of disability perspective on education in
Afghanistan as the way disability is defined and understood will influence the measures
taken to deal with it. In other words, definitions of disability have political implications
on the provision of services for disabled people. The way in which the language (i.e.
definition) influences the lives of people with impairments can be seen in special
education in Afghanistan. It can be argued that special education needs definition in
Afghanistan is misguided and compounds implicit oppression theory which neglects the
importance of social factors in the creation of learning difficulties, other impairments and
more importantly creating the disabling barriers in society.
Therefore, the need to examine the ways in which existing policies and interest of
professionals may contribute to legitimizing inequality in the education of specific groups
of impaired people. One example is policy research which often lacks awareness of how
disability is socially produced and so failed to challenge notions of disability as a social
problem located within society. There is need for changing the research relations between
researchers and those researched.
Educational provisions for disabled Afghans
Education policy in Afghanistan has no reference to special education of disabled people
including higher education policy. In late 2002 the Ministry of Education supported by
UNICEF drafted the Policy for the Rehabilitation and Development of Education in
Afghanistan. This policy in its First Item states a compulsory primary education for all
regardless of gender, ethnicity, language or religion. There was no reference to
compulsory education for disabled children unfortunately. Instead, there was indirect
emphasis on the prevention of impairment by various educational strategies. This
includes awareness raising of the negative consequences of terrorism, drug addict,
war/conflict and discrimination all of which may be considered causes of impairment. No
educational intervention for disabled children was yet mentioned.
In a post-conflict society such as in Afghanistan, services for disabled people have been
initiated and maintained by foreign organizations as mentioned earlier. Much focus was
given to those disabled by war, especially physically disabled people. The exception is
blind education which was started by the International Aid Mission in the late 1950s in
Kabul and continues until now. Despite its early origins, educational support for blind
people in Afghanistan remained limited and concentrated mainly in Kabul and few other
big cities.
Special education services in Afghanistan are delivered by specialized teachers and aim
at providing disabled school age children with academic skills, enabling them to read,
write and continue their education in accord with their needs and abilities. Special
education provisions in Afghanistan include early detection services which are essential
to the admission of children into special education programs (i.e. diagnosis by medical
professionals for children as having mainly physical or sensory impairment). There are
no services for other categories of disabled people or for those in remote areas, especially
disabled girls. Further, vocational training services are also associated with special
education services in Afghanistan, but they are limited in scope and scale.
Currently, there are few organized special education programs in the country. This
includes the SERVE deaf school in Jalalabad and other places under their CBR program.
The Hearing Impaired Foundation Afghanistan (HIFA) in Kabul also offers education
and vocational training for deaf children and youth including an ideology unit. The
International Aid Mission (IAM) on the other hand runs the only government school for
the blind in Kabul. Finally, the Comprehensive Disabled Afghan Program (CDAP) runs
special education classes in its community centers in five provinces. SERVE and CDAP
also support special classes for children with mental disability within their CBR program
in a few locations.
2003 study on integration in education
In 2003, a study was conducted by the Civic Voluntary Group - GVC to investigate the
level of integration in special education provision in Afghanistan. Its findings revealed
that a policy of encouraging integration does not exist in the country and that there are
problems encountered in attempts to integrate pupils with visual, hearing and physical
impairments into compulsory education. Only 1.11 per cent of the total population in
need had access to pre-school special education services.
The recently completed national policy on disability has emphasized the rights for all
disabled people for inclusive education, the need for enacting education laws, the need
for specialist teachers training and public awareness for educating the public. The policy
recommended the set up of educational programs in order to address preventative and
ongoing family health care, early detection and assessment of impairments, family
programs to teach parents about their child's impairment and appropriate home care, and
pre-school opportunities, both in urban and rural areas. Not least to mention the need for
introducing appropriate special and inclusive education at high education institutions.
Key actions were also proposed with roles and responsibilities of partners identified. The
full text of this policy is available at: www.disabilityafghanistan.org
Future of Special/Inclusive Education
In Afghanistan, only recently has the education system became responsive to the
individual differences of pupils, at least at the policy level. This was mainly highlighted
and emphasized by the new disability policy 2003. Legislation on disability doesn't exist
until now and the internal policy on education makes no reference to disabled people.
During the last number of years there has been a progressive development in training of
professionals dealing with special education. This has been done in an informal way and
at NGO's level as there is no special education training at university level in Afghanistan.
However, attention to these issues is increasing in school based work and institutional
needs.
Despite these developments, many obstacles remain. Three main issues would seem to be
particularly important as limitations to special education teacher training in Afghanistan.
The first relates to current approaches employed to deal with special education issues,
particularly if viewed from the perspective of a social model advocated in this paper. As
argued earlier, the individualistic medical approach is said to have exacted professional
control over disabled people lives and maintained their dependency and passivity. The
second limitation concerns the content of training organized workshops (i.e. complicated
statistics and psychometric information). In other words to what degree training focuses
on practical skills compared with theory and academic jargon. A third and final limitation
to special education in Afghanistan is the relevance of special training to broader policy
issues and social change (i.e. to what extent such training contribute to the emancipation
of disabled people through advocacy and lobbying activities).
It is at this point that special education should be addressed in Afghanistan from different
perspective such as the social view of critique of exclusion and discrimination. In this
alternative paradigm, emphasis should be placed on facilitating the development of the
clientele approach where users of services are involved in the whole business of services
provision. This goes in line with a right perspective in special education which would
emphasize empowerment, participation and social change. A central theme in such
approach is given to the role of research in the emancipation of disabled people.
Conclusions
Existing special education services for disabled people in Afghanistan can be
characterized as institutional in nature. They are largely located in the big cities and
controlled by professionals who deliver them predominantly in accord with the medical
model of disability. Most of those now benefiting from special education are deaf and
blind people through day 'care' institutions, or residential centers with the exception of a
few classes in ordinary schools in the community. The huge number of potential
beneficiaries compared with the total currently served implies that an enormous amount
of work needs to be done. Despite its origin as a form of inclusion, special education in
Afghanistan to some extent can be considered as segregating practices to many disabled
people.
The lack of effective organizations of disabled people together with the inaccessibility of
resources - information and policies, etc - makes the development of special and inclusive
education very slow. A large number of disabled people continue therefore to be
excluded from their right to education and this makes the experience of disability difficult
for all parties concerned.
The concern in this account is to bring forward ideas related to the social model of
disability, especially with regard to future disability studies and inclusive education.
References
Abberley, P. (1987), ‘The Concept of Oppression and the Development of a Social
Theory of Disability’, Disability, Handicap and Society, Vol. 12(1), pp. 19-55.
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. (1993) Disability, Liberation and Development. Oxford: Oxfam
publication.
Oliver, M. (1990) The Politics of Disablement, Basingstoke: Macmillan.
Stone, E and Priestley, M (1996) ‘Parasites, Pawns and Partners: Disability Research and
the Role of Non-Disabled Researchers’, British Journal of Sociology, 47, (4), 699-716.
UN (1994) The Standard Roles on the Equalization of Opportunities for Persons With
Disabilities. New York.
Wardak, A, Faiz IM, and Turmusani, M (2003) Disability policy development in
Afghanistan: towards barriers free society. Expert Meeting towards a Comprehensive and
Integral International Convention on Protection and Promotion of the Rights and Dignity
of Persons with Disabilities. June 2-4, UNESCAP, Bangkok.
Inquiry into Australia's Disability Discrimination Act
The final report into the Disability Discrimination Act was completed on 30 April 2004
and has been sent to the Australian Government for its consideration.
The release of the final report by the Government is the next step in the process. The
report is required by the Productivity Commission Act 1998 to be tabled in each House of
the Parliament within 25 sitting days of that House. When the Government releases the
report, a copy will be sent to all inquiry participants who made submissions, appeared at
the public hearings or were visited by the Commission. Copies will also be available
from the inquiry website or for purchase from Pirion/J.S. McMillan (details to be advised
when report is released).
Further information
Delwyn Rance (administrative matters) Ph: 03 9653 2182
Lawrence McDonald (other matters) Ph: 03 9653 2178
TTY (telephone typewriter) Ph: 1800 80 33 44
FREECALL Ph: 1800 02 00 83
People with Mental Disorders and the Disability
Pension System in Japan
Written by Emiko Kikuchi, Community Life Support Center Sora and translated by
Japanese Society for Rehabilitation of Persons with Disabilities
Income security for people with disabilities
According to the 2003 White Paper on People with Disabilities, it is estimated that people
aged 18 or older with physical disabilities number 3.422 million and people with
intellectual disabilities number 342,000 (including people with more than one disability).
People who are receiving medical treatment for psychiatric disorders (schizophrenia,
depression, manic depression and other emotional disorders, neuroses, etc.; onset mostly
during and after puberty) are estimated to number 2.04 million. Available data indicate
that more than several million people with disabilities in Japan face the serious challenge
of self-realization.
According to the " Survey on the Status of Employment of People with Disabilities in FY
1998 " published by the former Ministry of Labor, people with disabilities employed by
business establishments with five or more employees (regular, part-time or other
employees) were estimated to number 396,000 for those with physical disabilities ,
69,000 for those with intellectual disabilities, and 51,000 for those with mental disorders.
This suggests that it is unlikely they can achieve financial independence through work.
We must keep in mind that many people with disabilities who are unable to achieve
financial independence through work have no choice but to depend on family support or
public welfare assistance under Japan's disability pension system, which has continued to
leave a great number of disabled people without pension benefits. (Disability pension
recipients are estimated to number approximately 1.8 million.) Having been engaged in
livelihood support for people with disabilities on a daily basis, our center has witnessed
the vicious cycle whereby elderly parents have kept providing daily care and economic
assistance (living expenses, medical expenses, national pension premiums, nursing-care
insurance premiums, etc.) to their grownup children with disabilities, whose inability to
become independent of their parents in turn has made their livelihood more unstable and
limited their growth and potential . The disability pension system and other income
security measures for people with disabilities should be addressed, because these underlie
the lives of people with disabilities, enabling independent community life and social
participation based on self-determination and choice.
Disability pensions and people with mental disorders
It goes without saying that the disability pension system plays a central role in income
security for people with disabilities in Japan. For people with mental disorders, who have
historically lagged behind people with other disabilities in terms of receiving proper
attention, disability pensions , which have long covered them, are of great importance
(the system was inaugurated in 1961 and mental disorders have been covered since
1964). The Fundamental Law for People with Disabilities in 1993 legally defined people
with mental disorders as "those with disabilities," and the enactment of the Mental Health
and Welfare Law in 1995 led to the establishment of a system of "mental health welfare
handbooks" for people with mental disorders. There is now a greater awareness of the
necessity of welfare measures for disabilities caused by diseases in people with mental
disorders. Also, improvements have been made, albeit partially, by amending laws from
the perspective of measures already practiced in other fields of disability.
Nonetheless, a belated understanding of mental disorders as disabilities has kept these
disorders outside the system (a system that includes child rearing allowance, welfare
allowance for children and adults with physical and intellectual disabilities and other
welfare allowances provided by local governments; discount fares, free passes and the
like for Japan Railways and local transportation; recently, some local governments have
begun to consider mental health welfare handbook holders as being covered by the
system). In addition, the aforementioned delay has brought about disadvantages in
disability assessment (underestimation), which makes for a very user-unfriendly system
(e.g., special physically handicapped person allowance, welfare allowance for children
with disabilities, and support and mutual aid system for people with physical and
intellectual disabilities). The situation in which disability pension and welfare public
assistance alone serve as the recourse to improvement or resolution of economic
challenges caused by chronic diseases and prolonged disabilities remains unchanged.
Disadvantages in income security pose more serious problems for people with mental
disorders than for people with other disabilities.
As for the number of persons receiving disability pension due to mental disorders,
recipients of the Disability Basic Pension number approximately 220,000 (70% of whom
are under the noncontributory plan) and those of the Disability Employees' Pension are
estimated to number about 40,000. It is estimated that the total number of such recipients,
including those of the Disability Mutual Aid Pension, is below 300,000. Most people
with mental disorders are without pension benefits - even those who need disability
pension. Recipients of disability pension are required to satisfy two requirements: 1) a
payment requirement (condition for premiums to be paid by the date of the first medical
examination; this condition is not required when the date of the first medical examination
comes before age 20); and 2) disability condition requirement (whether or not the
degree of the disability applies to disability assessment standards as of the day the
disability is diagnosed). For certification that these requirements have been satisfied,
specified application documents (e.g., certificate of the date of first medical examination
and medical certificate) must be submitted. Nevertheless, it is difficult for people with
mental disorders to satisfy requirement 1) , and to submit application documents and
fulfill the requirement stated in 2) . As a result, a great number of people with mental
disorders are without pension benefits.
Mental disorders that do not fit into the disability pension system
Payment requirements and mental disorders
Since pensions are part of the social welfare insurance system, those who receive benefits
must pay a specified premium. But unlike retirement, a foreseeable event, it is difficult to
prepare for unpredictable injury, disease or disability. It is hard to be aware of the onset
of schizophrenia and other psychiatric disorders (as is also true for internal disorders,
intractable diseases and the like) and the impact (disability) on everyday life increases as
the symptoms progress over the long term from prodromal to acute. Normally, patients
and their families do not realize that they are mentally ill because of the way in which
psychiatric disorders develop. In many cases, people reach medical institutions in serious
condition and only after a long delay since onset. In a society where prejudice remains
deeply rooted, the date of first medical examination can vary greatly depending on the
social support systems available for patients and their families .
Disability condition requirements and mental disorders
Lagging awareness of what constitutes a disability has had a more serious impact on
disability assessment for disability pension than for other types of disabilities. Although
disability assessment standards and medical certificate forms have been revised, the
assessment has still tended to place a disproportionate emphasis on symptoms. In other
words, degrees of disability caused by diseases are not assessed in the context of
individual living conditions. Also in disability recognition, lack of pension benefits and
disadvantageous grades easily occur due to the nature of mental disorders as well as
problems of the support system.
Problems concerning certificates of the date of first medical examination and medical
certificates (used to determine the assessment day of disability)
Since the medical institutions people with mental disorders currently go to are more often
than not different from those they went to for their first medical examination, they may
be closed or clinical charts may have been destroyed (the statutory retention period for
clinical charts is five years) if many years have passed since the date of first medical
examination or the date of disability assessment. Such cases result in full loss or
reduction of pension benefits (retroactive claims become impossible) because of failure
to obtain a certificate of the date of first medical examination and medical certificates as
of the date of disability assessment. There are cases in which applications have been
accepted from an applicant who uses petitions in place of the certificate of the date of
first medical examination and other evidential documents that enable the date of first
medical examination to be identified (e.g., patient registration card, receipts and records
in housekeeping books). Nonetheless, even when conditions 1) and 2) are satisfied, a
great many people have gone without pension benefits or have received reduced benefits
due to irregularities in application documents that are certainly not the responsibility of
the persons in question.
The present disability pension system has countless problems: operational problems,
problems that transcend each disability and problems unique to each disability. These
problems can be seen through the state of individuals with mental disorders receiving
pension. It is becoming clear that the disability pension system must be improved to
prevent disabled people from going without pension benefits . This means not only
improving the system to prevent the nonpayment of premiums and problems concerning
the storage of medical charts issued by doctors, but also studying ideal disability
assessment from welfare perspectives according to the objectives of disability pension
(prevention of income declines and economic disadvantages due to disabilities).
For more detailed information, please visit
http://www.dinf.ne.jp/doc/english/resource/pension.html
Liberia: Call for Self-Representation
By William Rowland, South Africa (Rowland@sancb.org.za)
In the aftermath of the civil war, the disabled people of Liberia find themselves in dire
circumstances of poverty and powerlessness. The war has also caused an increase in their
number to 320,000, equalling 16 percent of the population. Blind persons alone number
some 77, 000.
"We must move disabled people out of welfare and into rights and development," says
Beyan Kota of the Christian Association of the Blind in Liberia.
Interviewed on the BBC World Service, Kota said that various groups of disabled people
- blind, deaf, physically and multiply disabled - had decided to join forces in the
establishment of the National Union of the Organizations of the Disabled in Liberia. The
politicians had failed them, he said, and now they demanded self-representation. "We
want at least one seat in the Interim Assembly," said Kota, President of the new Union.
Over the past 18 months the plight of disabled Liberians has come to world attention in
stark reports:
• 60 blind persons captive in rebel territory, the carers abducted, with four fatalities
from hunger and stray bullets;
• disabled and elderly people in headlong flight towards the capital city, Monrovia,
before the advancing rebel forces; and
• four civilians killed by rocket explosion outside a blind people's shelter.
Abandoned to their own fate by the international community and humanitarian agencies,
self-help and self-assertion seem to be the only solution for blind and disabled victims of
war.
Sebenzile Matsebula of South Africa: A Voice in the
Presidency
Interview by William Rowland, South Africa (Rowland@sancb.org.za)
The nexus between the new political establishment in South Africa and the disability
rights movement is a powerful force for change. And the chief agent of change is a
single-minded woman, Sebenzile Matsebula, Director of the Office on the Status of
Disabled People (OSDP) at the Union Buildings in Pretoria, seat of the South
African government.
What is the purpose of the OSDP and how did it come about?
Both from the side of civil society and from that of government - but much more so from
civil society - there was a recognized need for a coherent unit in the highest office in the
country, a unit that would develop programmes to promote disability issues and facilitate
the mainstreaming of disability in South Africa. During the reconstruction and
development phase immediately after the democratic election in 1994 disabled people
were deployed from the movement to work in the new Presidency. Those were the
individuals who were responsible for setting up the unit for coordinating and
mainstreaming.
The primary objective I would say was to ensure that disabled people were no longer
shunted from pillar to post. If you had a particular need as a disabled person or as a
parent of a child with a disability in the past you would be told to go to department A.
You would go to department A and they would say go to department B, and you would
spend the rest of your life shuffling between departments with no resources and no joy in
sight. So this office has to ensure that that doesn't happen anymore. But also it has to
ensure that departments that have line functions deliver on specific mandates, and deliver
effectively.
Could you explain the structure of the office and tell us about the people who work
here?
The Office on the Status of Disabled People resides within the policy unit of the
Presidency. There are a number of management structures within the Presidency, and one
of those is the policy unit. Within the policy unit the office is structured to address policy
development, policy implementation, policy monitoring and evaluation.
The head of the programme is myself, as Director. Currently we have two posts of deputy
director and they have specific portfolios as middle managers. One is a media liaison
position and the other is a change management position coordinating our provincial and
local government work; but many other responsibilities get delegated due to the human
resource constraints that we have. We also have four administrative officers within the
unit, two of whom are contract-based and donor-funded. And there is a senior secretary
as well. To add to this, and depending on the projects being implemented, there could be
one or two managers under contract. An example was the manager we had for economic
empowerment. Another example right now is the communications manager who is
responsible for implementing a public awareness campaign.
What have been the achievements of the OSDP?
Well, you could write a book about that; but let me pick up some highlights. There are
several aspects: At government level one of our key successes has been the training in
departments. When our new democracy started, a lot of posts were created to ensure the
mainstreaming concept, and people were deployed into government departments to
facilitate this mainstreaming. Those people would have had experience in social welfare,
as teachers, and whatever, but they did not have experience or an understanding of
disability. We then trained those people so that, as they discharged their duties, they had a
clear understanding of disability as a concept, as a principle, and as a way of living.
That has been a very successful project because, besides creating awareness and making
people do their work effectively, it has enabled us to gain allies in government. Because
of their strong understanding of disability, these people have become passionate about
their work and go out of their way to promote disability issues. So we now have what we
call "focal persons", but they're actually allies that serve as our ears and eyes and inform
us of what is going on and of any problems. If we need an entry point into a department,
we know there is somebody who will work with us meaningfully.
And where have been your greatest successes?
With the majority of departments, and certainly with the key departments of health, social
development, labour, education, trade and industry, communications. All those
departments have been active and have participated. We haven't had as much luck with
the Department of Transport, primarily because of their ever-happening restructuring.
Whenever we make an attempt to train, they're restructuring and no one comes.
Then, that training has also been done with government departments at provincial level,
which is even more significant because that's where delivery happens. And now we've
moved on to local government - training for local councillors, primarily councillors with
disabilities. Our feeling is, much as persons may have a disability, it doesn't necessarily
mean that they will be able to articulate issues as effectively as we'd like them to do. And
so we've empowered councillors to articulate the issues effectively.
Have there been any other achievements?
Our public awareness campaigns. We have had several initiatives - not on a large scale when we would use particular events, like the World Summit on Sustainable
Development, where we organized a photographic and art exhibition that generated a lot
of interest with people coming from all over the world and they had the opportunity to
interact with artists with disabilities and to purchase their creations. We have also used
the International Day of Disabled Persons to put up a huge public awareness campaign.
Before the actual day and on the actual day we would have radio campaigns, television
campaigns, publications, etc. Historically, it wasn't as large as we're doing it now because
now we have somebody focused on it.
Other achievements have been in terms of policy development. The Integrated National
Disability Strategy came out of this office and that has served as a pillarstone for the
promotion of disability rights. An offshoot of that policy has been other policies in
various departments and we have guided the development of those policies. We've had
major policies that have come out, for example on inclusive education, which was a
major breakthrough. We were also involved in the development of legislation, such as the
Anti-Discrimination Act and the Employment Equity Act, and we have made inputs in a
number of ways.
Another initiative has been capacity-building for civil society formations. Because of our
own background as disabled persons in this office, having come from that background,
we know that a strong and effective civil society is one of the reasons why in South
Africa we've been successful when it comes to issues of disability. Initially, we identified
what we refer to as marginalized groups of disabled people, which would be groups that
maybe reside in rural areas or groups of women with disabilities, and we provided
capacity through training but also through grants that enabled them to develop their own
programmes. That has really been very useful because, while some of those organizations
would probably have died, they have been able to sustain themselves to some extent.
How far they go really resides within themselves - how they're managing the future.
We have also had an exchange programme with our partners in Sweden where we had
civil society groups from South Africa visit Sweden and vice versa. The objective there
was not just to share our experiences, but to establish long-term relations, which is
happening in some of the sectors, primarily the deafblind sector, where we still do have a
great need to give support.
Some people say the disability rights movement in South Africa is running out of
steam. Others say, no, it's changing in character. What do you say?
I would agree with the latter position. I think it's changing its character and it's because of
where we are now. Certainly, we can't exist as a movement as we did ten or fifteen years
ago. Now that the focus is changing towards delivery and implementation, the movement
needs to focus on that; to say, okay, the foundation has been laid. Now we need to ensure
that what disabled people fought and struggled for bears fruit in the sense that we have
tangible things happening. We're no longer into philosophies and those kinds of
discussion, but we're into how we're making a meaningful and tangible difference in
peoples lives.
How did you first become involved with the movement?
I first got involved with the disability movement when I was still working in Swaziland. I
remember having many interactions with yourself, Friday Mavuso, Maria Rantho - all
those people that came out to Swaziland to create an awareness of this new shift in
thinking. We had come from a culture of a welfare state, where disabled people were
looked after and cared for by charities, by the good Samaritans. Then there was this
movement, saying, in effect, "No, that actually isn't the right way...disabled people have a
responsibility to effect changes in their own lives." That was my first exposure, which I
must say was a wonderful exposure. I was involved with the sector from 1986 as a
researcher - because I was trained in the sciences - but it wasn't until 1988-89 that I got
involved with the movement as a movement of people with disabilities. And I have been
involved ever since, with an increasing awareness and an increasing understanding of
what disability rights are all about.
We are all hoping for a comprehensive UN convention on disability and you are
representing South Africa in that process. What do you think is the outlook?
I must say that sitting on the other side of the fence as government, it's a very difficult
situation. I say it's difficult because as a disabled person I have aspirations. There are
certain things I want to see in that convention. But on the other hand, as a representative
of the South African government, you need to reflect back on what our own legislation is
all about and what the plans of government are with regard to disability, and sometimes
the two - my aspirations as a disabled person and the aspirations of government as
government - are not necessarily in sync. That certainly presents a dilemma.
However, I must say, as the one leading the process, I have a terrific team that brings on
board both disabled and non-disabled people. I have Petronella Linders, the new Deputy
Chair of the Youth Commission, and she brings a perspective that I find very useful. She
is blind, while the rest of my team are government officials and are non-disabled. They
have what I might call a decent understanding of disability and really want to be helpful,
but at the end of the day they do not live with a disability. So, whatever their
contributions may be, it's from a secondary perspective. My challenge is to balance the
aspirations of disabled people with where the government wants to move towards. It is
not an easy situation and I am constantly reminded by the members of my team that what
I am promoting, much as it makes logical sense, from a government perspective is not
realistic and therefore as a senior government official you cannot always be a proponent
of a particular move.
That sounds a bit negative but, as far as a lot of the articles currently in the draft are
concerned, South Africa is ahead. We meet regularly as a task team and sometimes we go
through the articles and we say to each other: "we've already been there, done that."
That's very gratifying.
But we need to remind ourselves that this convention is not about South Africa. It's
actually about the majority of disabled people who live on the African continent and it is
their needs that we want to capture in the convention. And it becomes extremely difficult
because most of the countries participating meaningfully in the process are in the north,
while those who participate and reside in developing countries are people without
disabilities who talk primarily as technocrats and bureaucrats. Their perspective is very
different from what their own people with disabilities would present, if they had the
opportunity.
Does the OSD, and do you yourself, have any role to play in the African Decade of
Disabled Persons?
Our role as an office was to facilitate the establishment of the Secretariat for the Decade.
About four years ago we were approached by the disability community on the continent
for us to lead the development of the African Decade; hence our role in convening a
conference in 2003 that brought together representatives of government and civil society
from all over the continent to deliberate on the African Decade. An offshoot of that
meeting was the request to establish a Secretariat, recognizing the availability of good
infrastructure and resources in this country. The South African government, through the
President, agreed to that request and the OSDP was tasked with that responsibility and it
has happened.
I am happy to say that Shuaib Chalklen is now officially employed as the CEO, on
secondment from the South African government, which means an immense contribution
of resources by the government by way of Shuaib's remuneration and support. The rest of
the funding is currently provided by SIDA, but Shuaib is in the process of mobilizing
more resources. Now that we actually have a Secretariat in existence, with its
headquarters in Cape Town and a satellite office being negotiated for Midrand, all
responsibility has moved to Shuaib and our role will merely be to serve on the board of
governors and on the committee that oversees the Secretariat.
Won't you tell us a little about yourself and your outside interests?
I think my biggest hobby is raising two boys. I am a mother of two, eighteen and fifteen.
Just that responsibility of knowing that you have these precious lives to look after and to
nurture, to ensure that they grow into fine men, is a wonderful challenge. For me that is
my only pastime; outside of that I don't have a life - I am still looking for one...
I was born in Barberton in the then Eastern Transvaal, donkey's years ago. At ten months
I contracted polio. It was 1957 and there was a terrible outbreak at that time. My mother
didn't know it was polio, but I ended up in hospital with a very high fever and both my
lower limbs became paralysed.
You're very close to the seat of power here in the Presidency. What is the political
commitment like around here?
What has sustained this office since we started in 1996 has been the political will, and the
political commitment, and the political support. Before 1999 we were in the Deputy
President's office, but after that we moved to the newly established Presidency, which
meant that we were directly under the head of state of the South African government.
President Mbeki has been a very strong supporter and proponent of disability rights. He is
the patron of the disability movement in South Africa and the disability movement is the
only civil society formation where he has agreed to serve as patron. He has refused to
take up any other patronages and you can't ask for any greater commitment than that. It's
at a very personal level.
The same goes for Deputy President Jacob Zuma and the Minister in the Presidency, Dr
Essop Pahad. The political principals in the Presidency are strong supporters and
proponents of disability rights. They go out of their way to mobilize resources and they
talk about disability issues wherever and whenever they can. Minister Pahad has even
embarrassed some of his colleagues in Cabinet by asking them directly how many people
with disabilities are employed in their ministries. When I hit a barrier, I know that if I
approach one of the political principals that barrier will be removed. All of this has been
a major contributing factor to the success of the disability rights movement in South
Africa.
IDEAS Project Sponsors Governance session in Oslo
A session exploring the impact of disabled politicians and disability policy bodies will be
held as part of the RI World Congress in Oslo, Norway, June 21--24. The session is being
organized as an activity of the International Disability Exchanges and Studies (IDEAS)
project for the New Millennium, administered by the World Institute on Disability
(WID).
The session, to take place on June 22, will feature the following speakers: Judith
Heumann of the World Bank, discussing the impact of disabled political appointees
during the Clinton Administration; Bengt Lindqvist, Europe's first blind Cabinent
Minister, reflecting on influences on Swedish disability policy over the last two decades;
Florence Nayiga Sekabia, Uganda's Minister for Disability and Aging, evaulting the
impact of the new Ugandan system requiring 5 disabled Members of Parliament; Lars
Odegaard, Norway's first wheelchair-using Member of Parliament, will analyze
influences on disability policy in Norway; and Kathleen Martinez, presidentially
appointed Member of the U.S. National Council on Disability, will discuss the impact of
the NCD on disability policy in that country.
IDEAS project & governance
Governance is one of the main topics of the IDEAS project and of the online magazine of
the project, www.DisabilityWorld. Since the project went online in 2000, various
national reports have been published on the activities and impacts of disabled politicians,
national disability policy bodies and improving access to democracy, especially progress
in making elections, polling places and related information more accessible.
In October 2003, the first international symposium on disability & governance was held
by the IDEAS project as part of the RI African Conference, held in Durban, South Africa.
In addition, IDEAS project reporters are conducting interviews with disabled politicians
worldwide. The interviews and the papers from Durban and Oslo sessions, together with
a trends analysis, will be published later this year as the Final Report of the IDEAS
project on the governance topic. Details: Kathy Martinez via email: kathy@wid.org
Arts & Media
New Georgian Disability Coalition Requests Videos for
National Public Education Efforts
We greet you on behalf of the "Georgian League of Disabled Persons". Our organization
has united 52 Georgian NGOs into a Coalition of Disabled Persons and Veterans,
working together on disability issues and integration of people with different kinds of
disabilities into society.
The coalition now has its own website: www.disability.ge
To support the worldwide disability movement and to change the opinions of society
about disability, it is necessary for our country to learn that people who have different
abilities are nonetheless equal members of society.
Our society needs to be more aware about these issues. For this purpose, we are planning
creation of video-clips on different kinds of disability and various situations.
We are of course making our own clips, but it would be better if we had some from other
related organizations.
We'll be pretty happy if we receive some from you.
With warm regards,
George Dzneladze (ligadzneladze@mail.ru)
Chairman of the League of Disabled Persons
Disability & Communications
Quick Web References: Where do I find...?
By Barbara Duncan (bjdnycla@aol.com)
Following are some recommended resources in response to frequent questions directed to
DisablityWorld staff. Let us know if we missed any great ones and we will revise the list
in a future issue.
Disability Statistics (global)
http://unstats.un.org/unsd/disability/default.asp
(background documents, country profiles)
www.cdc.gov/nchs/citygroup.htm
(reports of new international working group on disability statistics, 2002-03-04 meetings)
Photo Libraries
www.ilo.org/public/english/sitemap
go to info resources, go to photo library, under "what" select "disability & work":
hundreds of new photos, most in developing countries
http://www3.who.int/icf/photocontest2003/
results of World Health Organization's disability photo contests 2003 and 2002. Various
photos covering physical & mental disability in black/white, color and digital formats
www.endofpolio.org
collection of Brazilian photographer, documenting push to end polio, includes photos of
post-polio adults working, teaching etc
www.un.org/photos/disabled.htm
small online selection of disability photos, with info on how to contact UN photo library
collection of 230,000 photos
www.johnbirdsall.co.uk/catalogue.shtml
huge online catalog of photos for sale, including 1077 of disabled people, mostly drawn
from U.K.
www.disabilitymuseum.org/lib/stills/
mostly U.S. collection of 935 photos, art, postcards dating back to 1800s
Clip Art Libraries
www.disabilityart.com
selection of line drawings of disabled children and adults for sale
www.artbycheryl.com
cartoon style clips of people with disabilities
http://webclipart.miningco.com/cs/msub.disaa
collections of disability clip art ranging from finger spelling alphabets to cartoons to
illustrations
Documentary Film Libraries & Distributors
www.fanlight.com
videos on social issues, including 336 on physical disability and mental health, mostly
U.S. oriented, several international, for sale or rent
www.mediarights.org
independent productions on social issues, including 100 concerning disability, referenced
under "health & health advocacy," related to various countries
www.docuseek.com
social issue documentaries including 64 related to disability, available in U.S. and
Canada
Disability & Media Websites
These sites monitor and report on disability & media, related conferences, and review
new public education initiatives, films and television programs
www.disabilityworld.org
international periodical featuring news and views with media as a main topic
www.media-disabilty.org
new site established by European Disability Forum, includes best practices in public
education efforts
www.bbc.co.uk/ouch
humorous site with disability news, film quizzes, reviews of films and public education
initiatives in Britain
www.disabilityfilms.co.uk
lists over 1500 films by disability category
www.towson.edu/~bhalle/disable.html
links to disability news sites, disability & media bibliography
www.accessiblesociety.org
provides journalists with credible U.S. disability information and quotable sources
Disability Film Festivals
These sites are an-going source of information about new prize winning disability films
and festivals where they will be shown:
www.disabilityfilmfestival.net
UK annual international festival of films by disabled filmmakers, 6 th festival December
2004
www.perspektiva-inva.ru
Russia's 2 nd international disability film festival, November 2004
www.filmfestival.kolobrzeg.pl
Poland hosted an international disability film festival in 2003 and is hosting its second in
June 2004
www.picturethisfestival.org
Canada's biennial international disability festival, site lists all previous winners and how
to contact producers
www.madknight.com/cdt/superfest/index.htm
site of oldest disability film festival, Superfest, held annually in Berkeley
www.paraquad-nsw.asn.au
Australia's first international disability film festival, December 2004
www.enablelink.org/abilitiesfestival/index
display page of various international disability film festivals
Superfest XXIV-June 5, 6 in Berkeley: 11 Winning
Films
Superfest XXIV Award Winners
BEST OF FESTIVAL: From the BBC series Desirability - Julia's Body
As a child, Julia Trahan's body was crushed by a truck. In a coma for months, enduring
years of surgery and rehabilitation, Julia found a secret key to survival: the power of
sexual pleasure to transcend pain and hold her broken body to life. As an adult
performance artist, Julia uses her imperfectly exquisite body as both medium and
message to create performances that celebrate the power and sensuality of the female
"body different", confronting traditional perceptions of disability, beauty and gender.
Produced by Claire Fisher for Desirability, a BBC series about sexuality and disability,
this 30 minute documentary is an engaging and evocative portrait of one remarkable
woman's life and art.
AWARD OF EXCELLENCE: From the BBC series Desirability - Wounded Healer
Also produced by Claire Fisher for the BBC series Desirability, Wounded Healer is a
full-faceted and exuberant portrait of Pamela Walker, a free spirit with a disability from
Berkeley who counsels people with and without disabilities about coming to terms with,
and celebrating their sexuality. Fisher's artistic blending of a variety of material provides
us with a seamless 30 minutes of insight and entertainment.
AWARD OF EXCELLENCE: Liebe Perla (Dear Perla)
This intimate 53 minute documentary about the complex friendship between a disabled,
elderly Holocaust survivor and a disabled, German disability researcher was produced by
Edna Kowarsky and directed by renowned Israeli filmmaker Shahar Rozen. Romanianborn Perla Ovitz and her family, most of whom were of short stature, survived the
German concentration camps only because the infamous Dr. Josef Mengele wanted to use
them for experiments. Following the war the family moved to Israel. German born
Hannelore Witkovsky, also short statured, is investigating what happened to people with
disabilities in the camps. Shot in Germany and Israel, Liebe Perla explores two women's
very different lives with exceptional sensitivity and depth.
ACHIEVEMENT AWARD: Dreaming Awake
San Francisco artist John Killacky pushes the artistic envelope with this riveting,
impressionistic short that explores the dissonance between the dream of blithe movement
and the reality of chronic pain. Driven by a strong, poetic narrative, Dreaming Awake is a
breathtaking 5:30 minute rollercoaster ride, ratcheting emotional highs with sensual black
and white dance sequences, then hurtling us to the lows with stark images of intense pain
and debilitation.
ACHIEVEMENT AWARD: Outside Inside
In this innovative short (6:35 min.), director Nick Pentzell utilizes a multi-media
approach to give viewers a sense of what it is like to have his form of autism. Produced
by Gwen Waltz, Outside/Inside is a successful and informative film about a widely
misunderstood condition. A U.S. film, Outside/Inside also earned the SPIRIT OF
SUPERFEST Award in recognition of outstanding achievement by an individual with a
disability who is significantly involved with the making of the film.
ACHIEVEMENT AWARD: Talk to Me
Oakland, California, teems with people from diverse communities, many from AfricanAmerican descent who are struggling to survive. Talk to Me documents the varied
experiences of three families who have children with autism. The 28 minute film makes it
painfully clear how important it is to squeeze the system to obtain services. Producer
Vanessa Kaneshiro employs an original and engaging approach of having one of the
siblings act as narrator.
MERIT AWARD: Bad Hair Life
Producer Jennifer Raikes' enlightening and comprehensive 57 minute work is a
documentary about an obsessive compulsive disorder called trichotillomania. Affecting
both children and adults, this relatively unknown disorder has a wide range of hairpulling behaviors from over-tweezing eyebrows to causing complete baldness. Through
a series of interviews guided by a narrator who now has control of her compulsion, Bad
Hair Life offers personal insights and brings hope and support where there once was
isolation and shame.
MERIT AWARD: From the BBC series Desirability -Vera Cam
This 30 minute presentation documents the life of an artist who uses sexual fantasy, a
web-camera and a bathtub as props for her various personae. Vera loves life, and her
upbeat, matter-of-fact, in-your-face style is infectious. Sexually and artistically
provocative, this work provides a rare opportunity to examine the issue of "devotees"
from the artist's perspective.
MERIT AWARD: It's Our London
An unusually realistic approach to producing an access report card of a city, It's Our
London shows us where progress has been made but points out where work still needs to
be done. Producer Lois Acton gives us a fast-paced 23:33 minute overview from the
point of view of a diverse group of Britons - including a blind parent who can now enjoy
movies at the local theatre with her child due to the newly-available descriptive video
services.
MERIT AWARD: Mma Wahunzi (Women Blacksmiths)
Ugandan and Kenyan women who need wheelchairs gather for a 10 day course on how to
make them themselves, and Lawan Jirasuradej, a Thai filmmaker, is there to document it.
The workshop is supported by Whirlwind Women, a San Francisco based organization.
Lawan first became intrigued by the project while based in the Bay area. The 57 minute
piece also examines the lives and significance of the new mobility of a few of the African
women.
MERIT AWARD: Open Futures: People with Disabilities at Work
Produced by InfoUse, a U.S. disability research firm based in Berkeley, Open Futures is a
wide-ranging overview of the very different kinds of jobs now held in California by
persons with physical and mental disabilities. This 11:00 minute short zooms in on
people from diverse backgrounds and a multitude of disabilities.
Quadriplegic Directs Comedy About Quadriplegia
"Turning The Corner," a coming-of-age comedy focusing on a quadriplegic coming of
age is complete and the production company, NickelJar Productions, is submitting it to
film festivals and seeks theatrical distribution.
The film's writer and director, Daniel M. McCormack, is a quadriplegic. McCormack
believes the film is unique in that the quadriplegic character is an active member of the
mainstream community. Albert, the quadriplegic character, is a college student with an
active social life; his concerns and pursuits go beyond his disability. McCormack also
believes his own disability gives the film an honesty that is refreshing.
"Albert is not defined by his physical limitations. He is seen as a person first, with his
disability only part of who he is."
Invacare Corporation provided a power wheelchair for the movie. McCormack said the
wheelchair should be nominated for "best in a supporting role."
McCormack also served as the film's producer. The completion of "Turning The Corner"
is the culmination of three years' efforts, which included securing private financing.
For more information, visit the movie's website (turningthecornermovie.com) or contact
Daniel M. McCormack at (800) 213-1415 or at daniel@turningthecornermovie.com .
Arts & Media briefly
Sixth Film Festival of London Disability Arts
The Sixth Film Festival of London Disability Arts will take place December 1-5, 2004 in
London and details are available at www.disabilityfilmfestival.net. The deadline to enter
is June 30.
New Disability Films Available from Fanlight Productions
Fanlight Productions is pleased to announce the release of four new titles on disability
issues.
WE ARE PHAMALY
By Daniel Junge and Henry Ansbacher, Just Media
http://www.fanlight.com/catalog/films/408_wap.shtml
PHAMALY stands for the Physically Handicapped Amateur Musical Actors League.
This dynamic troupe doesn't cut any corners or make any compromises. This engaging
and entertaining documentary follows three cast members from their initial auditions
through intensive and challenging rehearsals, to opening night, as they take the stage for a
remarkable performance of "Once Upon a Mattress."
*Tribeca Film Festival*
19 Minutes, VHS, $199
A WHEELCHAIR FOR PETRONILIA
By Bob Gliner
http://www.fanlight.com/catalog/films/398_wfp.shtml
Potholed dirt roads and cobblestone streets, high curbs with no curb cuts, rough-hewn
stone stairways instead of ramps; in Antigua, Guatemala, life for anyone with a mobility
impairment is hard. This new documentary profiles "Transitions" a program, organized
and run by Guatemalans with disabilities, which trains them to manufacture and repair
cheap, sturdy wheelchairs designed for conditions in developing countries.
*Bronze Remi Award, WorldFest Houston*
28 Minutes, VHS, $199
MOTHERS OF COURAGE
By Rosie Dransfeld, National Film Board of Canada
http://www.fanlight.com/catalog/films/406_moc.shtml
This insightful video is a tribute to dedicated mothers and fathers throughout North
America who fight and organize for their children to get the medical and social services
they need. Bethany has multiple physical and developmental disabilities. Like thousands
of dedicated parents, her mother has had to fight for years to get Bethany the medical and
social services she needs.
48 Minutes, VHS, $229
BEARING WITNESS: LUKE MELCHIOR
By Dan Curtis, National Film Board of Canada
http://www.fanlight.com/catalog/films/404_bwlm.shtml
Luke Melchior jokes that at least he doesn't have to watch his cholesterol intake. At 26 he
has already lived longer than most people with Duchenne Muscular Dystrophy, a
progressive wasting disease of the muscles. His debilitating illness and the slow
deterioration of his condition have forced him to face death and to accept each day as a
gift and a challenge. Knowing his life will be relatively short has made Luke feel an
urgency about making a lasting contribution.
*Finalist, International Health and Medical Film Competition*
51 Minutes, VHS, $199
VISIT OUR WEBSITE: www.fanlight.com
Hidden Dragons: New Writing by Disabled People in Wales
The first an anthology of writing by disabled people in Wales has been published as part
of Arts Disability Wales' project, The Write Stuff, funded by the European Year of
Disabled People 2003 and in partnership with Parthian Books. Hidden Dragons: New
Writing by Disabled People in Wales, edited by Allan Sutherland and Elin ap Hywel, is
the result of a series of writing workshops for disabled writers held throughout Wales last
September by Write Stuff. Launches to celebrate the publication of Hidden Dragons will
be held across the country in June and July. For more information about the project,
please visit the Arts Disability Wales website at http://www.artsdisabilitywales.com or
Parthian Books at http://www.parthianbooks.co.uk.
Women
Disabled Women on the Web
The website of Disabled Women on the Web has been upgraded by Patricia Chadwick,
its webmistress: www.disabledwomen.net
Improvements include news listings on the following topics: advocacy & activism, art &
culture, disability studies, disabled women of color, economics & employment,
education, feminism, health, herstory, international, lesbians & queers with disabilities,
mothers with disabilities, sexuality, violence and young women with disabilities. To
suggest additional references, events or links, contact Corbett O'Toole:
corbetto@earthlink.net
Madagascar: Creating a Support Center for Disabled
Young Women
By Fela Razafinjato (fela.csm@netclub.mg)
[en français]
According to Handicap International's 2000 study, only 10% of children with disabilities
in Madagascar have access to schooling. The reasons most often suggested are the
following:
• the families' financial difficulties
• the parents' negligence
• the problem of mobility
Concerned with progressively eliminating the inadequacy of schooling and the exclusion
which victimize persons with disabilities, I put into place a support center for educational
and professional transition for young women with disabilities, the "Centre Sembana
Mijoro", on June 17, 2003.
The creation of this center was neither a matter of chance nor a passing fancy; rather, it is
tied to my own personal history and to some concrete facts.
I acquired my disability at the age of three in the aftermath of poliomyelitis. At the time,
my parents were quite worried about my future. They considered education my only
chance at achieving some independence, and paying for my school fees was always a
priority for them, even though we are a large family. I attended primary and secondary
school at a private institution owned by a friend of my mother. But problems arose when
I tried to sign up for the second-year enrolment exam at the ESCA (Sacred Heart School
Antanimena). The Director refused my candidacy for the simple reason that I have a
disability. He gave three reasons:
• I came from a relatively unknown school and he doubted my intellectual development
• If I were admitted, I would risk scaring the other students, and especially risk slowing
down the pace of the lessons
• The four-floor schoolhouse had no elevators and he wanted to avoid insurance
problems
Still, my mother persisted and even ended up threatening the Director with a lawsuit
challenging his refusal to accept a student solely because they have a disability.
In the end, the Director accepted my candidacy on the condition that I succeed
academically and that my parents cover the costs of any damage to the school. I worked
hard to abide by this commitment and to disprove what he thought about me. The result
was that I became one of the very best students in my class.
Another problem surfaced when I looked for a company to sponsor my professional
internship to complete my degree in Management. My candidacy was refused because the
employers did not want additional problems. It took a letter of recommendation from the
school for me to finally find a company. I started my internship one week later than all
my friends, and you can't imagine how frustrated I felt. I asked myself: "what good is it to
study if employers do not want to recruit a worker with a disability?"
All these biases have become a source of motivation for me to agitate in favor of the
rights of persons with disabilities, and this is why I was, am, and will be committed to
fighting for equal opportunities for disabled persons.
Participating in the training conference "Women with Disabilities: Beijing +5", held in
New York in 2000 (by the World Institute on Disability and Rehabilitation International),
further reinforced my determination to act by exposing me to the active involvement of
these women with disabilities from all corners of the world.
The Center Sembana Mijoro (C.S.M.), therefore, works to support the educational and
professional transition of young women with disabilities, operating on three levels:
• support for schooling by granting scholarships
• legal support in case of rejection by the school
• work placement for qualified young women
For the 2003-2004 school year (our first year of operation), 23 young women with
physical disabilities have been accepted, and they attend schools near their respective
homes. They come to the center each Wednesday afternoon and Saturday morning for
training, coaching and moral support, since our goal is to help them not only be
competent and productive, but also responsible and sociable in their personal as well as
their professional lives.
What a joy to see them regain an interest in their lives, feel useful and want to give their
best in order to live like everyone else. One of the girls at the center had almost
committed suicide because no one would take care of her, but since coming to the center
she wants to live for as long as possible.
A person with a disability can be a partner in development, as long as the needs tied to
her disability are supported by the state and by the community.
The response to disability is neither pity nor charity, but an act of solidarity to work
toward the principle of equal opportunity, because equal treatment can only be a reality if
there is equal opportunity as well.
Madagascar: Creation d’un Centre d’insertion Scolaire
et Professionnelle des Filles Handicapees Physiques
By Fela Razafinjato (fela.csm@netclub.mg)
Selon l'enquête réalisée par Handicap International en 2000, 10 % des enfants handicapés
malgaches sont scolarisés. Les raisons les plus souvent évoquées sont les suivantes:
• les difficultés financières des familles
• la négligence des parents
• le problème de déplacement
Dans le souci de contribuer à l'élimination progressive de la carence éducative et de
l'exclusion dont sont victimes les personnes avec handicap, j'ai mis en place, le 17 juin
2003, un centre d'insertion scolaire et professionnelle des filles handicapées physiques,
dénommé «Centre Sembana Mijoro».
La création de ce centre n'est ni le fruit d'un hasard ni un phénomène de mode mais elle
est à la fois liée à mon histoire personnelle et à des faits concrets.
J'ai acquis mon handicap à l'âge de 3 ans, suite à des séquelles poliomyélites. A cette
époque, mes parents se faisaient beaucoup de soucis pour mon avenir. Ils pensent que
seule l'école pourrait m'aider à avoir une indépendance et ont toujours payé
prioritairement mes études, même si nous sommes une famille nombreuse. J'ai effectué
mes études primaires et secondaires 1 er cycle dans une école qui appartenait à une amie
de ma mère. Mais le problème surgit quand j'ai voulu m'inscrire au concours d'entrée en
classe de Seconde à l'ESCA.
Le Directeur de l'établissement a refusé ma candidature pour la simple et bonne raison
que je suis handicapée. Il a avancé trois raisons:
• Je viens d'une école pas très connue et il met en doute mon niveau intellectuel
• Si jamais je suis admise, je risque de faire peur aux élèves et surtout de retarder les
programmes de la classe
• L'école n'a pas d'ascenseurs pour ses quatre étages et il ne veut pas avoir des
problèmes avec l'assurance
Malgré cela, ma mère a insisté et a fini même par menacer le Directeur de porter l'affaire
en justice dans le but de savoir sur quel droit refuse-t-on l'accueil d'un élève handicapé,
uniquement parce qu'il est handicapé.
Finalement, le Directeur a accepté à condition que je réussisse et que mes parents
supportent les frais de dégâts, s'il y en a. J'ai bossé dur pour respecter cet engagement et
pour démontrer le contraire de ce qu'il pense de moi. Le résultat, je suis classée parmi les
meilleurs élèves de la promotion.
Un autre problème est également apparu quand j'ai cherché une entreprise d'accueil pour
mon stage de fin d'études supérieures en Gestion. On a refusé ma demande car les
employeurs ne veulent pas avoir des problèmes supplémentaires. Il a fallu une lettre de
recommandation de l'école pour que je trouve enfin une société. J'ai débuté mon stage
avec 1 semaine de retard par rapport à mes amis et vous n'imaginez pas à quel point je
suis frustrée. Je me suis demandée: «à quoi ça sert d'étudier si les employeurs ne veulent
pas recruter un employé handicapé?»
Tous ces préjugés deviennent, pour moi, une source de motivation pour revendiquer les
droits des personnes handicapées et c'est la raison pour laquelle je me suis engagée, je
m'engage et je m'engagerai dans la lutte pour l'égalisation des chances des personnes en
situation de handicap.
Ma participation au séminaire «femmes handicapées et Beijing + 5», tenu à New York en
juin 2000, a renforcé davantage ma détermination d'agir, au vu de l'engagement actif de
ces femmes handicapées issues de quatre coins du monde.
Le Centre Sembana Mijoro (C.S.M) oeuvre donc pour l'insertion scolaire et
professionnelle des filles handicapées physiques et intervient dans trois domaines:
• scolarisation par l'octroi des bourses d'études
• plaidoyer en cas de refus d'établissement scolaire
• placement des filles diplômées
Pour l'année scolaire 2003-2004 (notre première année d'activité), 23 jeunes filles
handicapées physiques sont prises en charge et elles fréquentent l'école qui se trouve près
de leur résidence respective. Elles viennent au centre tous les mercredis après-midi et
samedis matin pour encadrement technique et moral car notre but est de les rendre non
seulement compétentes, productives mais aussi responsables et sociables aussi bien dans
leur vie professionnelle que personnelle.
Quel plaisir de constater qu'elles retrouvent la joie de vivre, qu'elles se sentent utiles et
qu'elles ont envie de donner le meilleur d'elles-mêmes pour vivre comme tout le monde.
Parmi les filles du centre, il y en avait une qui a failli se suicider car personne ne s'occupe
d'elle mais depuis qu'elle fréquente le centre, elle veut vivre aussi longtemps que
possible.
Une personne handicapée peut être un partenaire de développement si les besoins liés à
son handicap sont pris en compte par l'Etat et ses compatriotes.
La compensation du handicap n'est ni pitié, ni charité mais un acte de solidarité pour
favoriser le principe d'égalisation des chances car l'égalité de traitement ne peut être
réelle que si les chances sont égales.
Newsletter Features Mother/Daughter Relationships
Harilyn Rousso, a well-known feminist and artist, has edited a special issue of a
newsletter about disabled women's health issues. The issue features short articles about
mother/daughter relationships when one or both have a disability.
You can download the newsletter in PDF.
Call for Participants in Study of Menopausal Health
Issues
Subject: Study of Menopausal Health Issues for those with mobility impairments
The Texas Center for Disability Studies is conducting a study of menopausal health
issues for women with mobility impairments. They have recruited about 100 women
from around the country so far, but would like to recruit another 100.
Here is a brief description of the study: All women face a key health care decision after
menopause: whether to take hormone therapy (HT), but recent medical findings have
made this decision difficult for many women, particularly women with mobility
impairments. The aim of this study, which is sponsored by the National Institutes of
Health, is to test a decision aid designed to help menopausal women with mobility
impairments in making informed choices about hormone therapy use.
Our purpose is not to encourage or discourage women from using hormone therapy.
Instead, it is focused on helping them use the latest available information to make an
informed decision. All women who participate in this study will be mailed educational
information about health issues during menopause. They will be asked to complete a
series of questionnaires asking about their health, what they know about hormone
therapy, and what they think about taking it. Women will receive $30.00 in appreciation
for the time they spend reviewing the materials and completing the three sets of
questionnaire packets over a six month period. We hope to recruit 200 English-speaking
women with mobility impairments between the ages of 40 and 65 years.
If you would like additional information, please call Heather Becker, Research Director
at 512-471-9097. She would be happy to send print copies of the fliers to anyone who is
interested.
Thank you,
Trista N. Sims, MPH, CHES
Project Specialist
AUCD
1010 Wayne Avenue, Suite 920
Silver Spring, MD 20910
Tel: (301) 588-8252
Fax: (301) 588-2842
Email: tsims@aucd.org
Web: www.aucd.org
"Scared at School: Sexual Violence Against Girls in
South African Schools"
Review by Corbett Joan O'Toole (corbetto@earthlink.net)
"Scared at School: Sexual Violence Against Girls in South African Schools" by
Human Rights Watch.
Available from: Human Rights Watch, 350 Fifth Avenue, New York, NY 101183299, USA. Tel: (212) 290-4700. Fax: (212) 736-1300. Email: hrwnyc@hrw.org.
Website: www.hrw.org
Imagine if going to school meant also being sexually harassed, having your genitals
touched, and sometimes even being raped by teachers and fellow students.
Imagine if you lived in a country that had a widespread belief that men who have sex
with virginal young women (under age 12) would be protected or even cured of AIDS.
Imagine if your school, the police, the state department of education, were not taking
these issues seriously...that you were often disbelieved and ridiculed for making a
complaint.
Imagine if you had to sweep the floors and clean the buildings while boys in your school
were studying for exams.
Now imagine that you are a girl in school in South Africa. You are facing all of these
problems, as well as the fact that 50% of your classmates will die from AIDS.
Imagine trying to get an education under these circumstances.
Regardless of whether you are black or white, disabled or non-disabled, if you are a
female student in South Africa you are confronted with sexual harassment and/or sexual
assault on a regular basis.
Human Rights Watch report
"Scared at School" compiled by the Human Rights Watch extensively covers the barriers
to a successful education for girls in South Africa. They did in-depth research in 3 of
South Africa's 9 provinces. They spoke with parents, students, teachers, school
administrators, police officers, state officials and national policy makers.
As Kofi Annan, Secretary-General of the United Nations said "Education is the single
most vital element in combating poverty, empowering women, protecting children from
hazardous and exploitative labor... [girl's education is] an effective social development
policy with immediate benefits for health and nutrition as well as long term potential for
preventing conflict and building peace."
Gender bias prevents girls in many countries from receiving a basic education. South
Asia and sub-Saharan Africa house the majority of children with no access to education.
Because many more girls than boys are not in school, women comprise the majority of
the world's illiterate adults.
South Africa was chosen because the problem of sexual violence against girls in school is
severe and also because some segments of South African society are working hard to
change the situation. South Africa has one of the highest levels of violence against
women in the world.
In South Africa's schools, girls were "raped in school toilets, empty classrooms and
hallways, and in hostels and dormitories. Girls were also fondled, subjected to aggressive
sexual advances, and verbally degraded at school. We found that girls from all levels of
society and among all ethnic groups are affected by sexual violence at school."
Girls who experience sexual violence at school often leave school, lose interest in their
studies, stop participating in school events including sports, and/or transfer to new
schools. While an equal number of girls and boys sit for matriculation examinations, boys
pass the exams at a much higher rate than girls.
Part of the problem of sexual violence at schools is the level of sexual violence in South
African society. In a 1998 survey, three out of ten women interviewed had been victims
of sexual violence in the past year; seventy-seven percent said that sexual violence was
"very common" in their area; sixty-eight percent had experienced sexual harassment at
work or school; and one in four men said they'd had sex with a woman without her
consent before he was eighteen years old.
Scared at School documents that too often a school's response is to conceal sexual
violence, to avoid disciplining sexual abusers and to be uncooperative with police
authorities. This means that the girls are alone in dealing with the school abuse and the
perpetrators continue their abuse with impunity against the same girl or other girls.
The South African government is introducing measures to reduce crime and violence in
schools and to create concrete guidelines for dealing with sexual assaults at schools.
Human Rights Watch hopes that their research will assist South Africans to tackle this
entrenched problem and move more quickly towards solutions.
Women briefly
Women Pushing Forward (formerly Whirlwind Women) works to increase wheeled
mobility options for women worldwide
In April, Whirlwind Women, an organization that has worked to increase wheeled
mobility options for disabled women and girls for the last 10 years, officially changed its
name to Women Pushing Forward and separated from its parent organization, Whirlwind
Wheelchair International. The two organizations will maintain a close working
relationship and have plans for future collaborations. The organization has conducted
wheelchair construction and maintenance workshops for women in several developing
countries and most recently has been working with disabled women in Mexico to
increase access to wheelchairs for women that live in rural areas as well as their ability to
maintain their wheelchairs. For more information about this organization and its
activities, please contact Women Pushing Forward at hepowerofmobility@sbcglobal.net;
(Tel. in the US) 510-827-7747; or (Fax) 510-658-5283.
Children & Youth
Afghanistan: Community Based Approach to Parents
with Disabled Children: Reality or Ambition?
By Majid Turmusani (Turmasani@hotmail.com)
The impact of having impairment does not only affect disabled persons themselves but
also their surrounding environment. The presence of disabled child for example affects
the whole life of a family as well as the life of local community at large. Parents namely
mothers are, especially affected by the presence of a disabled member within the family.
This is especially true in a traditional society such as Afghanistan where responsibility of
care is often left to female members of the family (i.e. mothers). Mothers are not only
entrusted for providing care for a disabled child but also often blamed for having a
disabled child in the first place. Attitudes of blame and shame towards mothers and
families who have a disabled person are common in Asian societies (Miles, 1995).
With the absence of welfare system such as the case in Afghanistan, families are left
alone to care for their disabled members, consuming time and resources that many can
not afford. The state "transitional government" in this case does exploit family resources
instead of extending the required support for all citizens. It becomes apparent that the
family needs external support and that can best be extended when available in their
localities. Community based approaches to supporting families with disabled children are
amongst successful strategies in modern rehabilitation business. Community Based
Approach to care or what came to be known as Community Based Rehabilitation (CBR)
in this context involves the provision of services to certain target groups within a local
community in a manner that users find accessible, appropriate to their needs, and utilizes
local skills and resources. This often takes the form of services provided at home or
neighborhood (ILO/UNESCO/WHO, 1994; Peat, 1997; Boyce and Paterson, 2001;
Coleridge, 2002, Hinchcliffe, 2002). As an approach based on community participation,
CBR deals not only with rehabilitation but has the potential to respond to the socio
economic, cultural and political needs of society (Turmusani et al, 2002).
Service initiatives in Afghanistan
To bridge the gap between a family's need for rehabilitation and available support,
several leading initiatives were established in Afghanistan to provide services for families
with disabled members (children). This includes a number of notable programs such as
the United Nations Comprehensive Disabled Afghan Program (CDAP), SERVE, and
others. There are no accurate statistics on the total number of those benefiting from these
programs, but it is estimated that more than 20,000 people receive various rehabilitation
services throughout the country. CBR programs strive to reach for the neediest in society
and cover as many as possible in their local community. In reality, however, much of
CBR in Afghanistan is provided in community centers based in main cities and towns due
to various logistical reasons. These centers remain limited in covering the existing needs
of the disabled population who requires services let alone the newcomers. Transport of
those living in distant locations together with other factors such as level of available
skills, attitudes towards rehabilitation, cooperation between parents and workers, and
level of understanding in local community at large are all examples of challenges facing
this sector in Afghanistan. Moreover, the political situation in the region with refugees
returning to Afghanistan adds yet another challenge of how to reach and serve the
prospective needs.
Therefore, progressive support is needed for strengthening existing rehab structure
delivered by such community organizations, especially in the area of working with rural
families who have disabled children and disabled members in their midst. For example,
specialized home-based training skills are greatly needed in the area of special education
for intellectual disability, learning disability and speech therapy. It should be noted that
family and disabled people (i.e. children) themselves can be a valuable source of support
to rehabilitation process if given opportunity and allowed to make contributions in their
own rehabilitation.
Ideals vs. realities
Although, modern trends in rehab emphasize the value of involving service users and
their family in their own care in line with human rights ideals promoted by UN's
standards rules (UN, 1994), such involvement has in fact been neglected in Afghanistan
for a long time. It is often the needs of professionals that are taken into account when
designing rehab interventions to disabled people including children. When the family
does take part in rehab process, this takes the form of observers with little say over what
their children do really need, not to say the almost non-involvement of disabled people in
their own rehab. On the other hand, especially mothers have also other duties to do such
as child rearing, housekeeping etc and coming to community centers on regular basis
might not be the best options for them. Extending support to families within their village
or at home might be more appropriate, especially for those in distant locations such as
rural areas. There has been some effort made to strengthen home-based training for
families of disabled members but this is still in a very limited and experimental scale.
The above arguments have been substantiated to a large extent by a number of
professional observations made by researchers who conducted unstructured informal
visits to various CBR initiatives in Afghanistan over a period of one year between
November of 2002 and November of 2003. The focus of these visits was to assess the
quality of community rehabilitation care provided for disabled children in Afghanistan
through the exploration of the general perceptions of those involved in rehab process
including users of service (i.e. children), family and workers towards the rehab process.
Results of assessments from various viewpoints
Discussion with the above actors on their perception towards community care showed
that services provided were very appreciated by users and family alike, given the absence
of governmental services altogether. However, these services had a number of limitations
and tended to be generally of low quality. Workers providing physical rehab did not
understand the different pathologies according to parents who were skeptical whether
workers have the skills to deal with the various specific rehab needs of their children. For
example, some felt their children were forced into unnecessary exercises which do not
seem to have any impact. Parents have repeatedly emphasized the need for speech
therapy skills as well as skills in dealing with children with intellectual disability both of
which are very underdeveloped in Afghanistan. Further, parents complained that their
physically disabled children receive little physiotherapy due to the large number of adults
with back pain who are using the limited rehab service in the community.
On the other hand, professionals reported various problems in delivering rehab work
including problems with children, parents, and community at large. They also reported
challenges within the structure of CBR community centers such as level of support from
managers and coordinators of community centers and existing system of transport, and
kind of training they receive. Community workers including physiotherapy assistants
explained that their status is not respected in the community in general especially in terms
of remuneration and this is not helped by the secondary school they have which is often
not even in physiotherapy.
The majority of workers reported unrealistic expectations by parents and children who
demanded too much care from workers already burdened by many tasks. Some parents
for example expect their children with severe physical mobility impairments to walk after
a few sessions at Community Rehabilitation Centers or what is equivalent, while others
expect very specialized sophisticated services, and a third expect schooling be provided
to their children by such centers. This if anything underscores that the role of such
community centers within local community was unclear to many.
Problems pertaining to community centers according to professionals included lack of
appropriate space, equipment and materials, inefficient transport system, inaccuracy in
diagnosis and admission of users (i.e. severe cases are still not reached while some very
mild conditions are admitted), too much interruption to sessions by parents and adults,
and lack of support from community coordinators (i.e. work schedule, procedures, etc).
Beyond CBR activities, the general support in the community was perceived to be
inappropriate according to young adult service users and their families. Almost all
complained about the lack of opportunities to do sports, cultural activities and
educational tasks such as computer learning and other vocational training activities.
Social life for many appeared to be restricted by the limited physical mobility caused by
impairment, as well as the inaccessible environment at large. Relationships were
therefore greatly affected.
All agree about difficult access to services and mainstream
All actors have agreed that access to community services were quite poor and disabled
people continue to be excluded from mainstream activities. The exclusion from integrated
education for disabled children was perceived as a priority issue for action with focus on
post secondary teacher / professional training programs including physiotherapy training
amongst others. Those from rural areas emphasized the need for effective transport
system or other alternatives such as care at home. Welfare support was also highlighted
as one supporting strategy for disabled users and their families.
Based on the above analysis, it could be concluded that existing community responses to
the needs of families with disabled children have made significant contribution and
remain valuable and very much needed, given the absence of other alternative form of
support, especially governmental services. However, these have a number of shortfalls as
mentioned earlier, notably in the lack of multidisciplinary and team work practices right
from the inception and planning level. The limited participation of parents and users of
services is expected given the historical context of Afghanistan with communist ideals
which gives control primarily to professionals.
Strategy for future
CBR can be further exploited and its potential as a comprehensive strategy for
community development can be further enhanced when users of services and their
organizations are involved in the rehab process at all stages. To ensure wider
participation of service users, it is suggested to activate an outreach mechanism in dealing
with rehab needs of disabled people and their families as well as supporting various
emerging disabled people groups and organizations among other measures.
References
Boyce, W. and Paterson, J. (2002), ‘Community Based Rehabilitation for Children in
Nepal’, 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. 27-34.
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.
Helander, E. (2000), ‘25 years of community based rehabilitation’, Asia Pacific
Disability Rehabilitation Journal, Vol. 11(1), pp. 4-8.
Hinchcliffe, A. (2002), Children with Cerebral Palsy in Developing Countries: A Manual
for Therapists and Community Workers, Intermediate Technology, London,
ILO, UNESCO, WHO (1994), CBR for and with People with Disabilities, WHO, ILO,
UNESCO, Geneva.
Miles, M. (1995), ‘Disability in an Eastern Religious Context: Historical Perspectives’,
Disability and Society, Vo. 10(1), pp. 49-69.
Muller, D. (2001), ‘Editorial Introduction: Community Based Rehabilitation: The
Promise and the Paradox’, Disability and Rehabilitation, Vol. 23(1), pp. 15.
Peat, M. (1997), Community Based Rehabilitation, Saunders, London.
Turmusani, M. Vreede, A. And Wirz, S. (2002), ‘Some Ethical Issues in CBR in
Developing Countries’, Disability and Rehabilitation, Vol. 24(10), pp. 558-564.
UN (1994), The Standard Roles on the Equalisation of Opportunities for Persons With
Disabilities, United Nations, New York.
Wardak, A, Faiz IM, and Turmusani, M (2003) Disability policy development in
Afghanistan: towards barriers free society. Expert Meeting towards a Comprehensive and
Integral International Convention on Protection and Promotion of the Rights and Dignity
of Persons with Disabilities. June 2-4, UNESCAP, Bangkok.
Segregation/Integration of U.S. Schools Reviewed
By Steve Gold (www.stevegoldada.com)
Brown v. Board of Education - Information Bulletin # 66 5/04
May 17, 2004 marks the 50th anniversary of the Brown v. Board of Education decision in
which the Supreme Court held that school districts violated the Fourteenth Amendment
by racially segregating children in schools.
What follows is a review of segregation of children based on disability.
The latest data from the U.S. Department of Education, which annually collects this data
state by state and submits it to Congress, presents the following data for the 5,594,431
students between the ages of 6 and 18 with disabilities:
• A composite of "All Disabilities" shows that more than 1,236,373 children 22% of the
total with disabilities remain in segregated settings, i.e., they are either entirely in
"Separate Schools and Facilities" or spend more than 60 percent of their time "Outside
Regular Classes," in separate classes for children with disabilities. (These are the
definitions used by the U.S. Dept. of Education.)
• The flip side shows that only 2,742,219 less than half of all children with disabilities
are "integrated" in their schools, i.e., they spend less than 21 percent of their time
Outside Regular Classes or, in clearer terms, they spend more than 79% of their time
in "regular" classes with children who are not disabled.
• The middle 29% are children with disabilities who spend between 21 - 60% of their
school hours "Outside Regular Classes," presumably in "resource rooms" only for
children with disabilities. Obviously, the more time they spend "OUTSIDE regular
classes," i.e., closer to 60% than 21% of time, the more they are segregated.
A snap shot by specific disability classification shows:
• For children who have only an "orthopedic impairment"(these children have no other
disabilities), 30.2% are in segregated settings (i.e., spend more than 60% of their time
outside regular classes).
• For children who have either only a "hearing impairment," 37% are segregated and for
children who have only a "visual impairment," 27.6% are segregated.
• By far the most segregation occurs for children classified as having "Mental
Retardation." 57.3% of this population are segregated.
A breakdown by State - not local school districts - and by disability, graduation rates,
drop out rates, etc.,can be found at http://www.ideadata.org/PartBDataMeeting2004.asp.
Just click on your State.
School and education advocates have for too long been primarily parents of individual
disabled children. As with housing and Olmstead issues, the SCHOOL segregation of
children with disabilities in schools and educational settings must become an issue that
goes far beyond the direct participants. A truly inclusive society and educational system
can and should integrate children with disabilities.
While education is a "local" issue and your local school districts should be held
accountable for segregating children with disabilities, your State Department of
Education can and should as a policy issue review why such segregation exists in your
local school district. Advocates should review the extent of disability segregation school
district by school district.
Disability advocates must make education more than an individual child's issue; we must
organize around education. Pretend every child with a disability is your own; would you
accept a segregated educational system for your child?
Tell your school boards and state educational officials that Jim Crow education for
children is NOT acceptable, whether based on race or disability.
South Africa: innovative approaches to including
children with disabilities
By Barbara Kolucki (bakoluck@aol.com)
The needs of children who are disabled continued to be addressed in several unique and
practical ways in South Africa. Not only is there significant Government commitment to
the education and inclusion of children with disabilities, but there are a growing number
of examples of non-governmental organizations and media producers that are addressing
problems faced by families, schools and communities. This article describes some of
these innovative activities, materials and media:
TREE
Nearly everyone in South Africa knows TREE. It stands for Training and Resources in
Early Education and has a history of serving the needs of young children during the years
of apartheid until today. Their resource centers are based in one of the poorest areas,
Kwazulu-Natal (KZN) Province, but their reach and impact extends across the entire
country.
In addition to in-service training for people in the most remote and needy areas of KZN,
they produce simple, low-cost educational toys and play materials. They also produce and
distribute practical low-literacy materials that are designed to help those who care for
children - including children who are disabled.
One such booklet is called "Activities for Children with Disabilities". The text is by Lee
Hurrell and Illustrations by Jane Mqamelo. One of the first things I like is the first
sentence: "Every aspect of the child needs to be planned for and developed: physical,
intellectual, social, emotional". It is a simple statement, but it surprising how, even today
in many parts of the world, often solely the physical aspects are given attention, how
minimally the intellectual aspects receive attention and how frequently, the social and
emotional aspects are dismissed.
The booklet continues with important messages to the caregiver, "the caregiver's own
attitudes and expectations are important" to "Every child must be helped to develop a
positive self image".
The booklet is useful for anyone working in the field of early childcare or early primary
education. That is wonderful. It demystifies working with children with disabilities while
also giving practical suggestions that are not overwhelming to someone who is already
overworked and overwhelmed. For example, it tells the caregiver to: "help only when a
child wants or needs it", and encourages the caregiver to: "ask yourself if your help to
complete an activity will increase the child's learning, and is your help really needed?"
There is a section for various disability areas: mild developmental delay, severe learning
disability, physical disability, hearing disability, sight disabilities, emotional difficulty withdrawn and emotional difficulty - acting out. In each, it lists some of the signs for
identification, simple key words to remember when working with a child who has a
specific disability, examples of simple "tips" that work well.
The areas of emotional difficulty are often overlooked. I applaud TREE for including
them. Especially in a province in a country where HIV/AIDS affects nearly every family
- not to mention other potential causes of trauma, abuse and neglect - the number of
children with these difficulties continues to grow. The information in these sections could
be helpful to anyone caring for children.
In these sections, the practical suggestions range from the importance of listening to and
observing the child closely, relaxing and soothing activities, fantasy play and storytelling
- and the key words loving support and firm loving care , respectively for children who
are withdrawn or acting out.
I have worked in many situations where caregivers and teachers are asked to include
children who are disabled. They are often frightened and given no guidance - or too much
information. This booklet is a model of what is not too much to overwhelm or frighten. It
of course is not enough to meet all of the needs of the child. But I have so often seen that
too much information is given, and then very little is internalized and used. Here, less is
more.
ELRU
ELRU is the Early Learning Resource Unit based in Cape Town, South Africa. They are
well-known and respected for their Anti-Bias Project , helping children in the country to
learn about each other, live with and respect each other. They do wonderful work
One of the simplest and best books I have seen introducing a child who is disabled to
other children is ELRU's "At School, What if...?" It is basically a storybook told in
photos with very simple text. A young girl, Ncebakazi is starting school. We see in one of
the photos that she used calipers. In the other photos - she is writing her name on her new
books and lunchbox, getting her supplies ready, watching her mother sew the hem of her
uniform. Later she asks "What if the teacher shouts all the time?" as she imagines a fiveheaded teacher in a cartoon! Then she asks "What if the children laugh at me?" and then
she and her mom laugh as she imagines another cartoon where she and all the children
laugh together "so much that our teeth shake right out of our mouths!" And one my
favorites is when she worries about getting to the toilet in time because she can't walk or
run fast enough. This time, Ncebakazi imagines that the perfect place would be a school
where there are tons and tons of toilets everywhere!
Ncebakazi continues to talk about potential problems with stairs, spilling juice, not
having anyone to play with, having difficulty learning, etc. Finally she goes to school
and...she finds that all the things she was afraid of - turned out just fine. The teacher
spoke with the other children about her disability, the school made simple adaptations so
that there would be only one step to climb, she found new friends, learned new things including that school can be fun!
This 2003 book was written, illustrated and designed by Reviva Schermbrucker and
supported by the team at ELRU. The mix of photographs and cartoon illustrations is
magical. The inclusion of worries that every child has about going to school combined
with worries that a child who is disabled might have- is powerful. I have known about
and loved ELRU's work since the early 1990s. This book continues their innovative
legacy.
Another excellent book by ELRU is entitled "The Welcome Book: A guide to help
teachers include children with disabilities in the classroom". It was written for ELRU by
Laetitia Brummer. It has the feel of the classic Disabled Village Children by David
Werner - with a very South African flavor. It is 147 pages, so this can be a little less userfriendly for some teachers, especially those in poor, rural areas who themselves have
sometimes limited literacy skills. It does, however, use simple cartoon illustrations and
symbols to help readers in many ways. The stories are always written as case studies with
real people - some of them disabled, some not.
The book is divided into an introductory section, a chapter on child development and
disability, one asking "Can inclusion work in my class?" a chapter on the fight against
barriers and several appendices.
South Africa has come a long way and is a pioneer in many ways in its effort to assist and
include children and adults who are disabled. The country's Bill of Rights as well as its
new Constitution challenges unfair discrimination and ensures the right of basic
education to all. There have been several commissions and papers written for the
Department of Education and these have all led to recommendations and programs on the
educations for all learners, beginning with Early Child Development.
Amidst all the facts and information, there is a gentleness and quiet confidence about the
book. It speaks to the reader with reassurance about the possible intimidations caused by
having a child with a disability enter one's class when you never met someone with a
disability before - or you have never been trained to meet special needs. It addresses the
needs of the teacher as well as those of the children - something one does not often see.
Since ELRU does a great deal of work in early childhood education, there is special
emphasis on beginning at the beginning. It covers the need for community-based
rehabilitation and services in a country where a majority of people live in rural
communities. There are numerous examples of low-cost aids (though some teachers
would probably want more detail as to how to make these) - including turning existing
chairs upside down to make supports for children with cerebral palsy and other physical
impairments.
The book was written in 1998 - and is very current with regard to most international
standards. Having just worked in South Africa in 2003, I know that there continue to be
changes and improvements. But this book is a goldmine for any teacher.
The Sunshine Centre
The Sunshine Centre is one of few organizations created to meet the early intervention
needs of children who are "intellectually disabled or developmentally delayed". They
have four Early Intervention Projects in the Johannesburg area of South Africa, including
the township of Soweto. They offer training in working with the children as well as a Toy
Library.
The majority of the people they serve are from poor, rural areas in the community. To
meet the specific needs of these families, the Sunshine Centre developed specific
materials for home-based intervention - the first of its kind in the country.
Maria Longley, the Director of the Sunshine Centre Association, states that this Home
"Distance Programme" is in the process of being piloted and in addition to visits aimed at
empowering families, they also network with Government and other NGOs, use the
media to extend their reach, and are at present exploring additional ways to collaborate
with community and national radio.
The Sunshine Centre's training is called the START Home Based Programme on early
intervention. I was sent samples from their Parent's Guide, and Checklists to serve as
indicators for the child's level of functioning in gross motor development,
communication/receptive language, communication/expressive language, fine
motor/cognitive skills and activities of daily living. There are audio tapes for distance
education together with an accompanying manual with simple photographs and a
description of activities to do with the young child. I was not able to review the entire
manual or the audio tape - but the sample pages were simple, practical and seemed very
user-friendly.
In a country were so many people live in rural areas and many in both rural and urban
areas do not yet have services for infants and young children who are disabled - the
Sunshine Centre is a ray of light that I hope will spread throughout the country.
SABC
SABC is the South African Broadcasting Corporation. Together with the Department of
Education and the Institute for Health and Development there have been several
initiatives that that have taken to include children and adults with disabilities in their
programming. Some of the most popular are Takalani Sesame and Soul Buddyz/Soul City.
Takalani Sesame is a co-production with the U.S.-based Sesameworkshop. In addition to
a number of implicit and explicit segments that talk about disability, a very important
component is their outreach program, which includes supplemental materials and media
for people in communities. It is designed to extend the use and impact of the television
series. In posters and books for young children, children who are disabled are included.
In one booklet called "Let's move it!" the Muppet Moshe is pushing a healthy, happy boy
in his wheelchair, along with other children and Muppets running, playing and " moving
it". In a large poster that could be used in a preschool or community center, a community
scene is depicted representing various colors, religions, professions, ages and disabilities.
And in addition to children and adults who are disabled, one of the most popular new
characters is Kami , a delightful Muppet who is HIV-positive. And in another booklet
called "Look at me!" we see illustrations of children who can do many things to care for
both themselves and others. Again, this includes children with both temporary as well as
permanent disabilities. One of my favorites is of two boys doing pull-ups on the trunk of
a tree. The only thing that might make this better would have been to include a young girl
as well! All of these materials are multi-lingual (English, IsiZulu, Africans, Sesotho and
IsiXhosa).
Soul Buddyz is a very popular series for older children often dealing with difficult or
sensitive issues. It has an ensemble cast that in a drama format, helps viewers to learn
about topics like racism, xenophobia, learning difficulties, drug abuse, HIV/AIDS,
justice, etc. This TV series also has a community outreach component and numerous
print resource materials for children, teachers and parents.
In one Guide for Parents, readers learn how to identify various learning difficulties, the
correct terminology in several languages, and things that parents can do to help their
children. It also includes messages of hope - that children with learning difficulties can
do well, if they are nurtured, given the proper attention, not constantly compared to
others, and included.
Soul City is the TV series for adults that tackles some of the most timely and sensitive
issues in South Africa. They have dealt with disability, and have produced some valuable
print materials for the general public. One of the most basic and useful is a booklet on
"Disability rights...are human rights". It talks about the value of each person - as a
human being and to the community. It simply educates people in several languages with
new and appropriate terminology, myths about disability, case studies of real people (as
opposed to super-heroes) and a list of organizations and resources where individuals and
their families can go for help. It is written simply, clearly, with fabulous illustrations and
layout. We see some of the less-often pictured images - a mother with one arm holding
her baby, a child with a body disfigurement, people using sign language and little people.
One of the additional strengths of this book is that it openly and simply discusses
physical, sexual and emotional abuse of people who are disabled. I would love to have
this booklet translated into every language in the world.
Resources & Book Reviews
First Self-Advocacy Dictionary Requests Submissions
TOPIC: The First Self-Advocacy Dictionary of the English Language
Language is power. Some words, like developmental disability, have the power of money
behind them. Other words, like moron, have the power of ridicule and shame—two
thousand years of negative stereotypes. Still other more recent words, like People First,
have the power of solidarity with others in the self-advocacy movement. When we decide
which words are important and what they mean, we take this power into our own hands,
using it to shape the world the way we want it to be. The Self-Advocacy Resource
Network is compiling a dictionary of words of particular importance to self-advocates
and allies. Words of oppression, words of empowerment, words that keep cropping up, or
should be. Please join us in creating this power-full tool.
1.The First Self-Advocacy Dictionary of the English Language
A word’s “official” meaning is often quite different from its meaning to someone in the
self-advocacy movement. Take the word “grave marker.” The definition in the Webster’s
dictionary reads:
grave marker: 1. a marker placed on a grave to identify the person buried there.
However, someone from the self-advocacy movement, who knows the recent history of
state-run institutions, would perhaps give some different definitions:
grave marker: 1. something denied to persons who die in state institutions. 2. a small
stone with only a number on it, presuming to identify a person who died in a state
institution. 3. a stone giving the name of the person who died, a basic right of all people,
a sign of dignity and respect.
Since language belongs to all of us, we can take the power to define the words that
surround us in life. We can strengthen the self-advocacy movement by making our own
dictionary. The First Self-Advocacy Dictionary of the English Language is now a work in
progress. We’d like you to submit words that have been powerful in your life, words that
are a part of your experience with disability rights and the self-advocacy movement. Tell
us how you define them, what they mean to you. These could be positive or negative
words, helpful or harmful words. These could be confusing technical terms or playful
words. The definitions don’t have to be “dictionary-like”. You may want to tell a story
about the word. With this dictionary, we hope to empower each other to name a new
reality—a reality in which all people are respected, in which all people have the power of
choice, and in which all people contribute to society.
2. A Few More Definitions from the New Dictionary
Here are a few more definitions from The First Self-Advocacy Dictionary of the English
Language. As you read these, please be thinking about other words you would like to
include in the dictionary.
assertive: 1. the way to communicate in order to get what you want in life. 2. you state
your needs while also respecting others. 3. something you have to practice before you get
good at. 4. how to act if you want to feel good about yourself.
acronym: 1. a bunch of capital letters that stand for something, such as SARN (SelfAdvocacy Resource Network) and ADA (Americans with Disabilities Act) 2. a confusing
nonword that you can never remember what it means, such as ICUYS (I Can’t
Understand Your Sentences), PUPE (Please Use Plain English) and ZRLMH (forgot this
one). 3. a label others want you to wear before they can provide services (DD, MS, TBI,
MR, MMI).
choice: 1. a basic value of the self-advocacy movement, as in “I have a choice of where
and how I live.” 2. something denied to people with disabilities for most of history. 3.
whoever is in charge has it. 4. often something made by others and handed to people with
disabilities.
expert: 1. someone without a disability who has power over the life of a person with a
disability (doctor, parent, special education teacher, speech therapist). 3. opposite of ally.
eye contact: 1. what you don’t get from people who see you only as a disability. 2. what
you use when you are being assertive and getting what you want.
Idiot: 1. (from Webster’s Dictionary) “a feebleminded person having a mental age not
exceeding three years and requiring complete custodial care.” 2. another word for
someone with a developmental disability. 3. a harmful label. 4. a word people use
everyday to criticize others, meaning they’re “a stupid worthless person”. 5. a word that
children commonly learn from “children’s” movies.
leader: 1. a person who serves society (e.g., Rosa Parks, Ed Roberts). 2. any member of
the self-advocacy movement, which is based on shared leadership. 3. someone who does
more for the community than simply being a famous person, sports hero, rich person,
beautiful person, elected official, highly-educated person or media darling.
number: 1. a word that tells how many, such as “100 million people are involved in self-
advocacy worldwide,” or “curb cuts, started by people with disabilities, have a positive
effect on the lives of 60 million people in the US.” 2. something instead of a name that
was put on a grave marker to identify a person with a disability who died in a state
institution. (See also: grave marker.)
special: 1. a word used by con artists to get you to buy something of poor quality, as in
“Have I got a special deal for you.” 2. something at the store that you can buy at a
reduced price, as in “Day-old donuts are on special today”. 3. how someone without a
disability describes someone with a disability “We have 24 normal students and one
‘special’ student.” 4. someone who is not treated as a regular person.
3.We’d Like Your Help with these Particular Words
The following is a list of words we are working on. We would like more input from you
about how these words are used. Specifically, we would like two types of feedback:
definitions and examples showing how these words are used. Remember, words can have
more than one meaning. A word’s “official” meaning is often quite different from its
meaning to a self-advocate. Here are some particular words we’re looking to include:
client, PCA, counselor, victim, sheltered workshop, group home, cripple, self-advocate,
power, job, inclusion, segregation, nonsense, disability, pity, charity, sexuality, retarded,
institution, dignity.
4. How to Submit an Entry
It’s easy. Just send us a note to act@selfadvocacy.org including some or all of the items
listed below:
a. The word.
b. Your definitions—what this word means to you.
c. Some background information about the word—how it affects your life.
d. Examples that show how people use this word.
e. Any other comments you have.
5. Resources
Most resources on self-advocacy, stereotypes, disability culture and disability rights will
be full of useful, powerful words. See, for instance:
1. Self-Advocacy: Freedom, Equality, and Justice for All. This award-winning video
brings to life the rise of the self-advocacy movement, the worldwide civil rights
movement by and for people with developmental and other disabilities. Includes powerful
activities for groups to explore their own experiences of civil rights, oppression, and
working for change.
2. Shaking Off Stereotypes. Actor and disability activist Joy Mincey Powell plays
Samantha, a young woman battling a series of negative labels and attitudes in this
dynamic and entertaining program. Companion materials provide good exercises for
building confidence and self-esteem in groups. See also SARN e-mail on Stereotypes:
What’s The Matter With ME?! for more discussion of the power of language.
3. Disability, Identity and Culture. Language and power are at the core of disability
culture, a culture based on empowerment, pride and a flat out, no apologies celebration of
difference. Included with this resource is the award winning documentary “Disability
Culture Rap,” featuring Cheryl Marie Wade. Also included are group exercises on
naming, claiming and understanding disability culture.
4. ABC Clio Companion to the Disability Rights Movement, by Fred Pelka (1997). This
book is a great “first place to look” resource. It’s an encyclopedia of the disability rights
movement, with short, interesting entries on people, organizations, ideas and words (like
the term “developmental disability” and where it comes from).
Exercise: Take Back the Power: Writing Your Own Definitions for Words
Goal: Participants begin to think about the power of words and how to use that power in
their lives.
Description: The group chooses a couple of words and comes up with a variety of both
fun and serious definitions for them.
Materials: Poster paper and markers.
Time: 20-30 minutes.
When your self-advocacy group gets together, try coming up with some entries for the
new Dictionary. Say: “Now we are going to do a fun exercise to try to come up with our
own definitions for some important words in our lives, words that come from our reality
as self-advocates, words that come from our joys and struggles.”
a. Introduce the concept. Read aloud some of the text from this e-mail (see sections
#1 and #2 above) to introduce the concept.
b. Choose a word to define. Go around the circle and ask people to each brainstorm
a word they’d like to try writing definitions for. Write these on poster paper for all
to see. Then look at the list and have the group choose one to start with. If folks
are having trouble thinking of words, read from the list above (see Section #3
above) and ask folks to choose a word from this list.
c. Brainstorm together about this word. Get some ideas and feelings going by asking
these and/or similar questions and giving everyone in the circle a chance to
respond. Ask people to look at the word and then ask: “When you hear this word,
what comes to mind for you? What do experts want us to think this word means?
Can you remember a particular event in your life when you heard this word? Can
you remember where you were when you heard it? How does it make you feel?
What other words come to mind when you hear this word? What words mean the
opposite of this word? What do you think it means?”
d. Write the definitions. Divide into groups of 2-3 people and ask each group to
come up with four things: 1) a definition; 2) a revealing example of how the word
is often used today; 3) opposites/antonyms of this word; 4) similar
words/synonyms.
Ask each group to write down their results (take 5-10 minutes). Then have the small
groups come together and ask each to read out loud what they came up with. Remember,
there are no wrong answers here. Each person can decide what the word means to him or
her.
e. Submit to SARN (optional). Ask the group if they’d like to submit their work to
the SARN dictionary project, The First Self-Advocacy Dictionary of the English
Language. If so, e-mail your definitions to SARN at act@selfadvocacy.org.
US Census Facts for Features on Disability
On this day in 1990, President George H.W. Bush signed into law the Americans with
Disabilities Act, guaranteeing equal opportunity for people with disabilities in public
accommodations, commercial facilities, employment, transportation, state and local
government services and telecommunications.
Population Distribution
49.7 million
Number of people age 5 and over in the civilian noninstitutionalized population with at
least one disability, according to Census 2000; this is a ratio of nearly 1-in-5 U.S.
residents, or 19 percent. These individuals fit at least one of the following descriptions: 1)
they are 5 years old or older and have a sensory, physical, mental or self-care disability;
2) they are 16 years old or older and have difficulty going outside the home; or 3) they
are 16-to-64 years old and have an employment disability.
By age and sex 7 percent of boys and 4 percent of girls ages 5 to 15 have disabilities.
20 percent of men and 18 percent of women ages 16 to 64 have disabilities.
43 percent of women and 40 percent of men 65 or older have disabilities.
24%
Percentage of West Virginia residents 5 or older who have at least one disability, the
highest rate in the nation. (West Virginia also has the highest median age of any state.)
The Mountaineer State is closely followed by Kentucky, Arkansas, Mississippi and
Alabama. Counties with very high disability rates are clustered in the coal mining areas
of Kentucky, West Virginia and Virginia. These counties are Bell, Breathitt, Clay,
Harlan, Leslie, Martin and Owsley in Kentucky; Buchanan in Virginia; and McDowell in
West Virginia.
30%
Percentage of residents of Paterson, N.J., who have at least one disability. Paterson, N.J.;
Miami, Fla.; and Newark, N.J., have the highest proportions of people with disabilities
among places with 100,000 or more residents.
46%
Percentage of people with disabilities reporting more than one disability.
60%
Percentage of working-age men with disabilities who are employed. For women, the rate
is 51 percent. Altogether, 10.4 million
men and 8.2 million
women with disabilities are employed.
1.9 million
Number of people ages 18 to 34 who have disabilities and are enrolled in school. They
comprise 12 percent of all students in this age group. The majority of this group (1.4
million) attend college or graduate school.
For further information on the data in this section, see
http://www.census.gov/prod/2003pubs/c2kbr-17.pdf.
Specific Disabilities
9.3 million
The number of people age 5 or older in 2000 with a sensory disability involving sight or
hearing. This group accounts for 3.6 percent of the total population age 5 or over.
21.2 million
The number of people age 5 or older with a condition limiting basic physical activities,
such as walking, climbing stairs, reaching, lifting or carrying. This group accounts for 8.2
percent of the total population age 5 or older.
12.4 million
The number of people age 5 or older with a physical, mental or emotional condition
causing difficulty in learning, remembering or concentrating. This group accounts for 4.8
percent of the total population age 5 or older.
6.8 million
Number of people age 5 or older who have a physical, mental or emotional condition
causing difficulty in dressing, bathing or getting around inside the home. This group
accounts for 2.6 percent of the total population age 5 or older.
18.2 million
Number of people age 16 or older who have a condition that makes it difficult to go
outside the home to shop or visit a doctor. This group accounts for 8.6 percent of people
who are of this age.
21.3 million
Number of people ages 16 to 64 who have a condition that affects their ability to work at
a job or business. They account for 11.9 percent of the people in this age group.
For further information on the data in this section, see
http://www.census.gov/prod/2003pubs/c2kbr-17.pdf.
Earnings
$28,803
Median 1999 earnings of the 12 million
year-round, full-time workers who have any of the six disabilities mentioned above. By
comparison, people with none of these disabilities had median earnings of $33,970.
http://www.census.gov/population/www/cen2000/phc-t32.html
Serving Our Nation
2.4 million
Number of veterans who receive compensation for service-related disabilities. Of these
vets, 440,000 served in World War II; 165,000 in Korea; 799,000 in Vietnam; and
419,000 in the Persian Gulf. See Table 531 at
http://www.census.gov/prod/www/statistical-abstract-03.html.
Following is a list of observances typically covered by the Census Bureau Facts for
Features series, which can be found at http://www.census.gov/PressRelease/www/factsheets.html:
Martin Luther King, Jr. Day (Jan. 19)/African-American History Month (February)
Back to School (August)
Labor Day (Sept. 6)
Valentine's Day (Feb. 14)
Grandparents Day (Sept. 12)
Women's History Month (March)
Hispanic Heritage Month (Sept. 15-Oct. 15)
Irish-American Heritage Month (March)/ St. Patrick's Day (March 17)
Halloween (Oct. 31)
American Indian/Alaska Native Heritage Asian Pacific American Heritage Month (May)
Older Americans Month (May)
Veterans Day (Nov. 11)
Mother's Day (May 9)
Thanksgiving Day (Nov. 25)
Father's Day (June 20)
The Holiday Season (December)
The Fourth of July (July 4)
Anniversary of Americans With Disabilities Act (July 26)
Editor's note: Some of the preceding data were collected in surveys and, therefore, are
subject to sampling error. Questions or comments should be directed to the Census
Bureau's Public Information Office: telephone: (301) 763-3030; fax: (301) 457-3670; or
e-mail: pio@census.gov.
The Drum Beat - 251 - Why Invest in Communication
for Immunisation?
By Kier Olsen DeVries
In Jan. 2004, the workshop "Why Invest in Communication for Immunization?" was held
in Washington, DC, USA. Organised by the Health Communication Partnership and the
United Nations Children's Fund, this 2-day workshop brought together specialists,
practitioners, advocates, and funders who use communication to address immunisation
issues at local, regional, national, and global levels.
This issue of the Drum Beat highlights key themes emerging from 7 key presentations at
this workshop. Please see the Communication Initiative's Immunisation and Vaccines
window for additional resources.
1. Lessons Learned from 5 Country Studies of Communication Support for Polio
Eradication and Routine Immunization - Michael Favin, CHANGE Project, AED,
mfavin@smtp.aed.org
In 1999, communication specialists from major international organisations carried out
studies in Mozambique, Zambia, Democratic Republic of the Congo, Mali, and Nigeria
on communication support for polio eradication and routine immunisation. Highlights of
these findings include:
• Polio activities tended to be successful, while routine coverage remained stagnant or
fell.
• A wide array of partners carried out mobilisation and communication efforts for polio
National Immunization Days, but minimal efforts (e.g., health talks and posters) were
conducted for routine immunisation/surveillance.
• There was limited promotion of routine immunisation in polio communications; some
efforts made actually caused confusion.
• Centralised, top-down planning and execution resulted in some materials being
inappropriate, and some being distributed late or not at all.
What worked well:
• emphasising interpersonal communication and involving local leaders and networks
• fostering interagency and intersectoral collaboration
• engaging public officials and the media in partnerships
• using a mix of media
Areas needing improvement:
• carrying out and using research for programme and materials design
• making communications more strategic (systematically defining desired behaviours;
analysing and addressing barriers)
• ensuring local involvement in communications planning
• allowing more lead time (funding)
• supervising, monitoring, and evaluating communications
• funding, managing, and ensuring quality of routine immunisation services
• interacting more closely with families (health staff)
Conclusions:
• Research-based national strategies can provide basic technical content and message
consistency while supporting local adaptation and planning
• Routine immunisation programmes can draw on ideas that worked in polio
eradication.
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9820.html
2. Integrating and Supporting Expanded Program on Immunization (EPI) Communication
- Lora Shimp, BASICS, lshimp@basics.org
Country immunisation programmes, commonly referred to as the Expanded Programme
on Immunization (EPI), are supported by national Ministries of Health as well as various
donor and partner organisations. Lora Shimp's presentation focuses on the
recommendations and strategies implemented by the Communication Advisory Group
(CAG) for immunisation, which works with EPI partners and the Task Force for
Immunization in Africa (TFI) to develop communication and advocacy support for
efforts such as the "reaching every district" (RED) approach. Efforts to reduce drop-out
(i.e., infants who begin their vaccination schedule but do not complete the series) are part
of RED, in which communication plays a key role. Areas of focus have included use of
existing community networks to mobilize and engage their support and utilisation of
immunisation services, provision of information through mass media, and use of
interpersonal channels (e.g., vaccination cards used by health workers and mobilisers to
track vaccination status and provide information to caregivers, stressing the importance
of return visits to complete the immunisation schedule).
At a Nov. 2004 meeting, the CAG recommended the following to the TFI:
• Increased financing and support for communication as a component of routine EPI to
enable more effective community linkages, advocacy support, and social mobilisation
for immunisation
• Funding for communication positions at global, regional, and national levels
• Technical support and capacity building for and within countries, including
strengthening service delivery and improving communication linkages at district and
community levels (e.g., enhancing health worker and caregiver interpersonal
communication, linking health centres with communities and local leaders, and
increasing use of media for advocacy).
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9897.html
3. Communication lessons learned in polio eradication - Silvio Waisbord, CHANGE
Project, AED, swaisbor@smtp.aed.org
Silvio Waisbord discusses specific communication goals in support of polio eradication,
with a focus on capacity building in terms of personnel, technical, and organisational
aspects:
• Large-scale media (television, radio) have raised awareness about polio vaccines
◦ different media is appropriate in rural and in urban areas
◦ local and minority media is particularly relevant
◦ print media (posters, newspapers) have had a limited impact
• Interpersonal communication is important - whether between health workers and
caretakers, or with traditional and religious institutions and leaders
• If not addressed quickly, rumours can turn into organised political resistance
What could have been done better?
• Explaining and conveying information about oral polio virus and other immunisation
programmes
• Using local forms of communication and culture (e.g., popular theatre or community
radio) strategically
• Designing focused strategies for specific populations
• Maintaining continuity of communication activities
• Show linkages between communication interventions and coverage rates
Waisbord urges that capacity building in communication for immunisation be
institutionalised, that communication plans be improved, and that technical expertise in
communication be maintained. He also suggests fine-tuning communication strategies for
hard-to-reach communities, which have irregular access to health services, insufficient or
no access to mass media, are highly mobile, and are marginalised.
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9821.html
4. The Rotavirus Vaccine Program - Evan Simpson, Program for Appropriate
Technology in Health (PATH), RVPinfo@path.org
PATH's Rotavirus Vaccine Program was created in 2003 to reduce child morbidity and
mortality from childhood diahrroeal disease by accelerating the availability of rotavirus
vaccines appropriate for use in developing countries. Strategies include:
• Vaccine demand: providing potential vaccine purchasers at global, national, and local
levels with information about disease burden estimates, safety and efficacy; financing
and economic data; and immunisation policy analysis.
• Vaccine supply: collecting data needed to conduct demand forecasts and market
surveys, and information related to international supply requirements. "The aim is to
overcome demand uncertainty, which has been a significant barrier to ensuring
vaccine availability in developing countries."
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9819.html
5. Immunisation Communication, the Media and the Public - Dr. David Salisbury CB
FRCP FRCPCH FFPHM, Department of Health, London UK,
David.Salisbury@doh.gsi.gov.uk
David Salisbury begins by exploring "the new role" of the media in reporting on
vaccination issues. He claims that "the science element" lends an "aura of mystique" to
the issue of vaccination for those exposed to media reports. A key communication
challenge is that often what is feared is not the communicable disease itself but, rather,
the vaccine. Anti-vaccine groups sometimes use scare tactics to galvanise the media for
their cause, communicating vaccination risks (perhaps unsubstantiated) to both children
and adults. The media can exacerbate the problem by reporting findings as scientific
truths, while failing to report findings that contradict earlier false claims.
Salisbury reviews some research that gauges the vaccination-related communication
needs and preferences of UK mothers. These women have indicated that they want
information from people who communicate in a clear, consistent, and open manner. In
short, they desire an evidence-based approach, and want to be empowered to find that
evidence for themselves.
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9836.html
6. Advocacy for Financial Sustainability - Dana Faulkner & Rebecca Fields, CHANGE
Project, AED, rfields@aed.org
Faulkner and Fields begin by describing the requirement, introduced in 2002, that
Financial Sustainability Plans be submitted to The Global Alliance for Vaccines and
Immunization (GAVI)'s board for grant reporting. This requirement, they say, has
highlighted a few key challenges:
• The money doesn't reach where it is needed
• The programme doesn't do as much as it could with the money
• There is not enough money to meet programme objectives
To address these challenges, an advocacy framework/tool (in the form of a CD-ROM)
has been developed to build awareness about the value of immunisation. This tool first
focuses on the finance-related strategic objectives already selected by the country, then
poses a series of questions to clarify needed actions. It defines the specific actors who can
carry out these actions. This framework includes a series of short problem statements that
link to frameworks for analysis and planning, existing manuals, country examples, and
resource materials. 50 such CD-ROMs have been sent to GAVI's Financing Task Force
(FTF) for field testing; the contents of the CD-ROM are posted on the FTF website.
Conclusions:
• Advocacy is highly culture-bound and situational: Outsiders can only pose good
questions - the answers require insider savvy
• Advocacy activities targeted at specific, politically sensitive issues (like budget
allocations) can be a risky activity for EPI programme managers
• Country health officials tell us they need more than messages that say "immunisation
is good" - if they are to successfully advocate for immunisation programmes relative
to other priorities
• Successful advocacy for immunisation by country programmes has the potential to
affect the power dynamic between and among country managers and external funders
- funders may feel that their priorities are challenged.
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9919.html
7. Repositioning Vaccines: A New Global Advocacy Strategy - Tommy Bruce; for more
info, contact Chlopak, Leonard, Schechter & Associates, vaccines@clsdc.com
Advanced in 1998, the Healthy People 2010 Objectives articulate more than 500 national
objectives for improving the health of Americans by 2010. One of them holds that full
immunisation coverage should be guaranteed to at least 90% of USA children, with at
least 80% coverage in every district. To support this effort, Chlopak, Leonard, Schechter
& Associates engaged in a research project with UNICEF in 2003. The study found that,
while vaccines are appreciated within the public health field, there is general reticence
toward pro-vaccine advocacy.
Tommy Bruce urges that a campaign be undertaken to engage policy makers and the
media, rebuild public trust in vaccines, generate political and financial support for
immunisation, and create a sense of urgency. Bruce suggests that messages emphasise
specific child survival goals. Media outreach approaches might include:
• Identifying and engaging top journalists covering immunisation
• Providing a steady flow of information
• Sustaining a positive message in front of key audiences
• Countering negative stories
• Publicising achievements and success stories
• Promoting media responsibility through, for example, a campaign that would feature
one "hot spot" per month (e.g., Hepatitis in Peru). An Internet portal could make
information about vaccines accessible, organise and unify existing resources, establish
links to partner organisations' websites, create a virtual forum for partners and allies to
exchange ideas, and constitute a rapid response mechanism to broadcast problems and
correct false rumours.
For a more detailed summary, see http://www.comminit.com/stcommforpolio/sld9898.html
EQUITY: Newsletter on Disability & Assets
Management
February 26, 2004: World Institute on Disability (WID) launches groundbreaking enewsletter EQUITY: Disability and Asset Building Communities Working Together
The time to ensure economic opportunities for all is now. EQUITY e-newsletter supplies
the tools to include people with disabilities in the American dream.
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.
EQUITY exchanges valuable information about disability issues and asset building
strategies through new articles from leaders in the field, program administrators, and
actual participants with disabilities that challenge us to narrow the divide, mutually
benefiting both communities.
EQUITY also offers helpful tips and answers your questions about disability issues,
provides periodic federal policy updates, as well as valuable resources to connect the two
communities.
EQUITY is available on-line at http://www.wid.org/equityCheck the WID website
monthly for new editions and to subscribe to the newsletter.
To subscribe or unsubscribe, send mail to equity@wid.orgPlease include in the subject
line: subscribe equity OR unsubscribe equity
EQUITY is a publication of World Institute on Disability's Access to Assets project and
is supported by the Asset Accumulation and Tax Policy Project (AATPP), a project
funded by the National Institute on Disability and Rehabilitation Research (NIDRR). This
publication is supported by NIDRR and The University of Iowa under grant number
H133A031732. Its contents are solely the responsibility of the authors and do not
necessarily represent the official views of NIDRR or University of Iowa.
EQUITY is also generously funded by the J.W. and Ida M. Jameson Foundation and the
Charles and Helen Schwab Foundation.
North American Clearinghouse on ICF Messages
1. TENTH NACC CONFERENCE ON ICF JUNE 1-4 IN HALIFAX
Plans for the Tenth Annual NACC Conference on ICF to be held June 1-4 in Halifax are
finalized. On June 1, we will have a 10am to 4pm "Tutorial on ICF". Trainers include
Nenad Kostansjek of WHO, Alex Ruggieri of Mayo Clinics, Marijke de Kleijn of the
Dutch ICF Collaborating Center, and Geoff Reed of the American Psychological
Association. Fifty persons are registered. About 89 persons from 11 countries have
registered for the June 2-4 ICF meeting. We will have Plenary and Concurrent sessions
with 36 papers to be presented in the following sessions: International Updates, WHO
Update, The ICF Clinical Procedural Manual, Assistive Technology and ICF, ICF Based
Assessment Tools, Clinical Application of ICF by Professional Associations, Crosswalks
of ICF to Other Assessment Tools, The Corpus of ICF Concepts, The Application of ICF
to Specific Populations, and Canadian Work in ICF. About 10 poster sessions are also
expected. The entire focus and official theme of the meeting will be on "Advancing the
Research Agenda in ICF". There will be a reactor panel to comment on the research
agenda comprised of Dr. Ed Sondik, Director of NCHS/CDC, Dr. Kate Seelman, former
Director of the National Institute on Disability Rehabilitation and Research, and several
prominent Canadian health officials. More information can be found on the
www.icf.conference.com website. The best 16-18 papers of the meeting will be published
in the book Disability and Health: Advancing the Research Agenda for ICF. It will be
Volume 3 in the series by Nova Science Publishers, and is scheduled for publication early
in 2005.
2. ICF-CY SOON TO BE ON WHO WEBSITE
Keep checking http://www.who.int/classification/icf -- soon the ICF adapted for Children
and Youth (ICF-CY) will be there in draft form as it is being field tested. The ICF-CY
extends the coverage of the main ICF volume through the provision of expanded content
and increased detail to cover body functions and structures, activities, participation and
environments unique to the growth and development of infants, toddlers, children and
adolescents. The draft version of the ICF-CY and related assessment materials will be
posted on the WHO website for field trials. Evaluation focuses on review of content by
individuals knowledgeable about the development and functioning of children and youth.
Parents, professionals and other stakeholders complete a survey on the coverage and
applicability of the ICF-CY for administrative, clinical and research settings. The clinical
applicability of the ICF-CY will also be examined using four age-group questionnaires;
infancy (0-2), early childhood (3-6), middle childhood (7-12) and adolescence (13-18).
The field trial involves coding of limitations of function, activities, participation and
environmental factors in children and youth with chronic conditions and disabilities as
well as inter-rater reliability analyses. There is wide spread national and international
interest in the ICF-CY and evaluations will be carried out in clinics, schools and other
settings providing services for children in all WHO regional sectors. Findings will inform
the preparation of the final draft and define the sensitivity and comprehensiveness of the
ICF-CY for use in administrative, clinical and research settings to document functional
limitations of children of different ages and health conditions. For more information,
contact: Rune J. Simeonsson, Ph.D., M.S.P.H., Frank Porter Graham Child Development
Center, CB #8185, UNC, Chapel Hill, NC 27599-8185, tel (919) 966-6634, FAX (919)
966-0862, Rune Simeonsson, [simeonsr@mail.fpg.unc.edu].
3. GRAY WINS $250,000 ICF GRANT FROM NCMRR/NIH
Dr. David Gray of Washington University recently won a $250,000/3year "R-21" grant
from the National Center for Medical Rehabilitation and Research/National Institutes of
Health. The grant title is "Rehabilitation Outcomes, Community Participation and ICF".
The purpose of the proposed research is to further develop a new set of measures of
participation and environmental factors related to participation by linking them to
functional capacity, reducing survey completion time using computer assisted web based
testing, and creating a data feedback and computational system that provides both
individual and aggregated data. This project will improve the psychometric properties of
three existing assessment instruments (CORE, PARTS/M and FABS/M) by using
cognitive testing among an expanded sample population to further refine and test these
instruments. After the cognitive testing of new items, the surveys will be put into a
computer assisted form and alpha tested by people with mobility limitations who have
experience in computer-assisted testing. After revising the computer-assisted form of the
survey, a web based survey will be created. The web based survey will be made available
to 1,200 individuals who meet the inclusion criteria of having mobility impairments that
limit their ability to walk three city blocks or who use mobility devices for moving in
their environments. The results of these surveys will be used to establish standards scores
for different core set of people with mobility limitations. These standard scores will then
be used to establish outcome markers for rehabilitation into full participation in the
community. The research data combined with input from experts will be used to develop
a user-friendly data display for individual and aggregated data that allows users to
examine where they fit with regards to participation in their communities. Finally, a
profile will be created for users that will automatically match their participation
characteristics and environmental barriers and facilitators to potential resources that could
enable them to increase their participation in their communities. Incidentally, David now
uses the new $35,000 iBOT wheelchair, which goes backwards up steps, stands up tall,
and more. That's the St. Louis arch in one of the photos. For more information, contact:
David B. Gray, Ph.D.
Associate Professor of Neurology and Associate Professor of Occupational Therapy
Program in Occupational Therapy
Washington University School of Medicine
Campus Box 8505
4444 Forest Park
St. Louis, MO 63108
314 286-1658
FAX 314 286-1601
grayda@wustl.edu
4. VELOZO WINS $250,000/3 YEAR NCMRR/NIH GRANT
Dr. Craig Velozo of the University of Florida recently won a $250,00/3year "R-21" grant
from the National Center for Medical Rehabilitation and Research/National Institutes of
Health. The grant is to "Develop a Computer Adaptive TBI Cognitive Measure Based on
the ICF". Cognitive functional status measures are critical tools for research on the
effectiveness of rehabilitation interventions for traumatic brain injury (TBI). Global
functional measures, such as the Functional Independence Measure (FIM), are widely
used in rehabilitation settings, but only provide a cursory evaluation of cognition.
Traditional neuropsychological measures, while standardized and psychometrically
sound, are lengthy and often criticized for having weak ecological validity. The purpose
of this project is to use the International Classification of Functioning Disability and
Health (ICF) as the foundation to build an ecologically valid item bank and computer
adaptive testing (CAT) prototype for an applied cognitive measure for TBI. Modern test
theory provides a basis for developing a measure that is both efficient to administer and
precise for assessing cognition along the continuum of TBI recovery. Item Response
Theory methodologies, specifically Rasch analysis, can be used to calibrate items thereby
providing a means to match item difficulties to cognitive ability levels across stages of
TBI recovery. CAT technology provides a mechanism to administer a small number of
items to an individual, based on his/her cognitive ability level. The purpose of this paper
is to present the design for a funded planning grant. Literature reviews of existing
instruments and theoretical models will guide creation of a large item bank (300-500
items) reflecting cognitive behaviors commonly observed throughout TBI recovery.
Next, health care professionals, patients and caregivers will be interviewed to expand and
fine-tune the item bank. Upon completion of the modification of the initial item bank, a
paper and pencil version of the instrument will be pilot tested on 50 patients in acute
hospitalization, inpatient/outpatient rehabilitation and 6-months post rehabilitation. Selfreport, therapist and caregiver administrations of the instrument will be compared to a
"gold standard" abbreviated neuropsychological assessment to identify the most
appropriate rater at each stage of recovery. Finally, a web-based CAT prototype of the
instrument will be developed and administration feasibility will be determined by
feedback following healthcare professional, patient and caregiver administration. This
planning grant will result in the item and CAT development necessary for reliability,
validity and sensitivity testing of the TBI cognitive measure in a multicenter trial. The
long-term objective is to develop an efficient, precise and ecologically valid instrument to
evaluate outcomes of TBI interventions. For more information:
Craig A. Velozo, Ph.D., OTR
Research Health Scientist,
North Florida\South Georgia Veterans Health System Associate Professor, Associate
Chair and Graduate Coordinator Department of Occupational Therapy College of Public
Health and Health Professions
University of Florida
P.O. Box 100164
Gainesville, FL 32610-0164
Email: cvelozo@phhp.ufl.edu
Tel. (352) 273-6128
Fax. (352) 273-6042
UF OT Dept. Web Site: http://www.hp.ufl.edu/ot/
Ph.D. Rehab. Science Web Site: http://www.hp.ufl.edu/rehabsci
ICF Computerized Adaptive Measure: http://www.ICFmeasure.com
5. $10 MILLION IN CROSSCUTTING RESEARCH MONEY AVAILABLE
FROM CDC
While the letter of intent is due May 24, the application deadline is June 22, 2004. The
CDC intends to commit up to $10,000,000 in FY 2004 funds for approximately 20 new
grants in response to this RFA. The award provides up to three consecutive 12-month
budget periods within a project period of up to 3 years. An applicant may request a
budget for direct costs of up to $300,000 per year. Applicants should focus their
investigations, which will ultimately make a substantive contribution to CDC’s
overarching goals and have a significant impact on people’s health status. Specifically,
the research outcomes should ultimately translate into extended lifespan or improved
quality of health at any or all of the life-stages, and/or should substantively contribute to
people’s protection from non-occupational infectious, environmental, or terrorist threats.
http://grants1.nih.gov/grants/guide/rfa-files/RFA-CD-04-001.html
6. NEW FREEDOM INITIATIVE ICF SUBCOMMITTEE MEETS AGAIN
The New Freedom Initiative Workgroup ICF Subcommittee is sponsored by the Office
on Disability/HHS. On April 22, Paul Placek and Marjorie Greenberg participated in the
second meeting of the Subcommittee. It was held in the Humphrey Building in
Washington, D.C. and was chaired by Margaret Giannini, M.D., F.A.A.P., Director,
Office on Disability. Participating in person and on the phone were Saadia Greenberg of
AoA, John Crews of NCBDDD/CDC, Margaret Schaeffer of ACF, Paul Placek (as
Facilitator), Tamara Clay of IHS, Carolyn Rimes of CMS, and David Gray of
Washington University (Co-Facilitator). There were three presentations/discussions.
First, John Crews discussed his new position as the lead scientist with the Disability and
Health Team in the National Center on Birth Defects and Developmental
Disabilities/CDC. John has used the ICF (and its predecessor, the ICIDH) extensively in
his research on vision impairments and related secondary conditions and he has 17
ICIDH/ICF publications to his credit. To quote John: "ICF is the currency for our
research...ICF is a Swiss army knife...ICF is the conceptual framework applied to my
analyses of how vision impairment relates to activities and participation..." The second
presenter was Carolyn Rimes of the Center for Medicare and Medicaid Services. She
described a set of six articles in Health Care Financing Review (Vol. 24, No. 3, Spring
2003) which addressed functional status and the ICF. Marjorie Greenberg was the third
presenter and discussed a draft of the "Roadmap for the Implementation of ICF" which is
being developed for the October 2004 WHO FIC Network Meeting in Iceland. The
document includes a "SWOT Analysis of ICF" (SWOT =Strengths, Weaknesses,
Opportunities, and Threats) which lists about 50 ICF strengths and weaknesses. This
Roadmap grew out of the St. Louis NACC meeting in 2003, and is being considered by
the WHO FIC Implementation Committee chaired by Peter Goldblatt and Marijke de
Kleijn. The third meeting of the New Freedom Initiative Workgroup ICF Subcommittee
is scheduled for May 27 at the new headquarters of AHRQ. Janet Valluzzi is hosting, and
AHRQ Director Carolyn Clancy will join the group.
7. DISABILITY ITALIAN NETWORK HAS FIRST ICF NATIONAL TRAINING
MAY 2004
During the week of May 24, the Disability Italian Network (DIN) is having its first
national training course in Rome. The ICF course, developed by DIN in collaboration
with WHO, is divided in two courses: ICF Basic and ICF Advanced Course.
1. Basic Course (80 Registrants): it is an eight hour course on: brief history of disability
and of classifications, ICF basic principles, ICF structures and background, differences
between classifying, measuring, assessing, impact on national legislation and application
in different settings, presentation of ICF tool box, core sets and WHO DAS. Also
covered: the ICF "revolution" in health and disability sector; the ICF in Italy project; ICF
in the world; perspectives; projects and contacts.
2. Advanced Course (40 Registrants): 3 days courses + 3 months distance learning (DL)
+ 1 day evaluation and exam. This three-day course is structured as follows:
Day 1. ICF structure, chapters, domains etc., how to code, how to use the different
qualifiers, when to use them, difficulties and faq.
Day 2. ICF checklist,: how to use it, coding case vignettes. Use of checklist in different
settings ( rehabilitation, administration, statistics etc.)
Day 3 WHO DAS: description and use of WHO DAS, how to assess, video cases of
interviews with actors, coding, exercises of coding case vignettes, of backcoding and
from codes rewrite case histories.
Three months with distance learning methodology. DIN tutors will have a faq site, a
question and answer with pupils about the homework. Each pupil will have to code ten
pre-assigned cases, prepared and tested by DIN, and will have to write 3 cases with
coding. Each pupil will have to do 5 complete coding with ICF checklists as well as
assessment with WHO DAS 2 in real cases which each participant sees in his/her work.
Final day: each tutor is doing an evaluation of homework done by pupils 15 days before
final evaluation. The last day is also to have forum discussion of the application of ICF in
each participant's setting, difficulties, group discussion etc. Exam on the whole course.
All cases are collected by DIN's databank .
All training participants are members of the net that is growing in Italy and that is
coordinated by DIN; DIN reports to WHO. WHO Collaborating Centres will be updated
on how the first course was received. Jerome Bickenbach, DIN's consultant for the
preparation of the training for trainer part, and designee of WHO to collaborate with DIN,
will join us in Italy to assist. In the next months the course, prepared by DIN and also
given to the Italian Ministry of Welfare for the "ICF in Italy Project: pilot project ICF and
labour sector" will be available in two languages for distance learning. For ICF in Italy
project: see www.welfare.gov.it/icf. For more information about the training, contact:
Dr. Matilde Leonardi, Neurologist, Paediatrician
Coordinator
International Scientific Research and Disability Project
Scientific Coordinator and WHO Liaison ICF In Italy Project
Scientific Direction
Italian National Neurological Institute C. Besta
Via Celoria 11
20133 Milan
Italy
Tel: +39 02 2394 511/ 498
Fax: +39 02 2363973
E-mail: leonardi@istituto-besta.it
8. ILLUSTRATED VERSION OF ICF AT http://www.tokyo.imagelab.or.jp/icf/ill/english
Washing whole body
Applying water, soap and other substances to the whole body in order to clean oneself,
such as taking a bath or shower.
Tai Takahashi and Jiro Okochi of Japan have developed the illustrated version of ICF in
English and Japanese. The website address of the English version is
http://www.tokyo.image-lab.or.jp/icf/ill/english. This very practical tool will facilitate the
understanding of ICF by adding illustrations to each ICF code. The authors also designed
the website to allow other languages to be added simply to the library. The Japanese and
English language versions of the web site are free to use, and the web pages enable the
user to view the classification via a hierarchical structure with accompanying codes, text
and illustrations. The design of the web site also allows other languages to be added
simply to the library.
9. ICF PAPERS WELCOME IN THEMATIC ISSUE OF DISABILITY STUDIES
QUARTERLY
This is a Call for Papers for a thematic issue of Disability Studies Quarterly to appear in
Fall, 2004. The theme is "Disability Studies in Education of Public Health and Health
Professionals: Can It Work for All Involved?” Whether "Disability Studies" as an
academic field, conceived in opposition to the "medical model of disability," can retain
its integrity in the context of health-related professional education is a contested issue.
Conversely, from the Public Health sector's perspective, can Disability Studies be
integrated into current curricula while maintaining the goals of public health, is another
question. Meanwhile, several innovative programs are in fact introducing the "social
model of disability" and its implications into the curricula of various health and public
health professional schools and programs. This thematic issue of DSQ seeks papers that
both describe such programs and reflect on the controversies they engender. See DSQ's
website (www.dsq-sds.org) for guidelines regarding different types of submissions. The
deadline is June 30, 2004, for papers that will be sent for peer review. The deadline is
July 15 for Commentary (not peer-reviewed). It will be extremely helpful if you indicate
as soon as possible your intention to submit either kind of paper. Please send expressions
of interest, or questions, to Guest Editor Kristine Mulhorn, Ph.D., at
kmulhorn@umflint.edu .
10. THREATS HEADS ADVOCACY AND REIMBURSEMENT COMMITTEE
OF ASHA, INCLUDES ICF GOAL
Travis Threats recently visited AHSA Headquarters as Head of the Advocacy and
Reimbursement Committee of the Special Interest Division of ASHA having to do with
intervention with persons with neurogenic communication disorders. As part of their
three year strategic goals, there is one goal on educating the profession and the public
about the ICF philosophy of treatment, i.e., that communication is not just a goal in and
or itself but also to help larger major life areas such as attenting church, participating in
leisure activities, political rights, etc. For more information, contact Dr. Threats at: Travis
T. Threats, PhD, Associate Professor, Saint Louis University, 3750 Lindell Blvd.,
McGannon Hall, Room 14, St. Louis, Missouri 63108 tel 314-977-3175, threats@slu.edu.
11. AURA KAGAN WINS $376,998/3 YEAR GRANT ON APHASIA, INCLUDES
ICF
Aura Kagan, Ph.D., a speech-language pathologist, has just been awarded a grant for a
project entitled : "A participation-based framework for outcome measurement in Aphasia
Institute" by the Ontario Ministry of Health and Long-Term Care Grant # 06021. It is a
three-year grant for $376,998. She is using various frameworks including the ICF for this
work, and Travis Threats is the ICF consultant on this project. Dr. Kagan is the Executive
Director, Director of Education and Applied Research at the Aphasia Institute -- The Pat
Arato Aphasia Centre. This is a highly innovative nonprofit organization that has always
had at the forefront of its mission the quality of life of persons with aphasia via
improving their ability to successfully interact with their environment. The web site for
the center is www.aphasia.ca. For more information, contact Dr. Kagan at The Aphasia
Institute, 73 Scarsdale Road, Toronto, ON M3B 2R2, Canada, Akagan@aphasia.on.ca,
Tel: 416-226-3636, x24, Fax: 416-226-3706.
12. "NACC CLEARINGHOUSE ON ICF" IS HOTLINKED ON WHO WEBSITE
This "NACC Clearinghouse on ICF" is a "Related Link" on
http://www.who.int/classification/icf. The www.icfconference.com website for the
Halifax conference is also a "Related Link". Visit the WHO website often for updates.
And catch up on all the Monthly NACC Clearinghouse on ICF Messages since October
2002 at www.cdc.gov/nchs/about/otheract/icd9/icfhome.htm. There are now 600
subscribers to the "NACC Clearinghouse on ICF".
13. SPOTLIGHT ON JOHN CREWS
John E. Crews, D.P.A. is the new the Lead Scientist with the Disability and Health Team
in the National Center on Birth Defects and Developmental Disabilities, Centers for
Disease Control and Prevention. His Doctorate of Public Administration is from Western
Michigan University, Kalamazoo, Michigan, in 1990, where he was honored as "All
University Graduate Research and Creative Scholar" in 1988. John has over twenty-five
years experience in vision rehabilitation and disability research. He managed a clinical
program for older people with visual impairments for fifteen years in Michigan until
1992. He then became the Acting Director of the Rehabilitation Research and
Development Center on Aging at the VA in Atlanta. After that, he served as the
Executive Director of the Georgia Governor’s Council on Developmental Disabilities,
and then served as Research Director at the Rehabilitation Research and Training Center
on Blindness and Low Vision at Mississippi State University. In 1998, he joined the
Centers for Disease Control and Prevention in Atlanta. John's specialty is vision
impairment and aging. He serves on several boards, including the American Foundation
for the Blind, American Society on Aging, and Lighthouse International. John’s wife,
Nancy, is a social worker, and his daughter, Kate, is a junior at Agnes Scott College in
Atlanta, majoring in French education. John says: "ICF is the currency for our
research...ICF is a Swiss army knife...ICF is the conceptual framework applied to my
analyses of how vision impairment relates to activities and participation..." John has 17
ICIDH and ICF publications to his credit, including:
Hendershot, G. E. & Crews, J. E. (in progress). International Comparability of Survey
Statistics on Visual Impairment. Journal of Visual Impairment and Blindness.
Crews, J. E. & Campbell, V. A. (in press). Effects of Multiple Health Conditions Upon
Function Among Older Visually Impaired People. Proceedings of the 2002 International
Conference: Developing and Delivering Quality Services for Frail Older Blind and
Partially Sighted People. London: Royal National Institute of the Blind.
Crews, J. E. & Campbell, V. A. (in press, expected May, 2004). Vision Impairment and
Hearing Loss Among Community Dwelling Older Americans. American Journal of
Public Health.
Crews, J. E. & Smith, S. M. (2003). Public Health and Aging. American Journal of
Public Health, 93, 700-702.
Crews, J. E. (in progress). Neither Prepared Nor Rehearsed: Caregiving and Disability
over the Lifespan, A Public Health Perspective. In Caregiving for Individuals with
Disabilities, ed R. C. Talley & J. E. Crews. New York: Oxford University Press.
Crews, J. E. (2003). The Role of Public Health in Addressing Aging and Sensory Loss.
Generations, 27(10), 83-90.
Lollar, D. J. & Crews, J. E. (2003). Redefining the Role of Public Health in Disability.
Annual Review of Public Health, 24, 195-208.
Crews, J. E. & Campbell, V. A. (2001). An Examination of Activity Limitations and
Conditions Related to Vision Impairment in Older People. In H.-W. Wahl & H.-E.
Schulze (Eds.), On the Special Needs of Blind and Low Vision Seniors: Research and
Practice Concepts. Amsterdam: IOS Press.
Crews, J. E. & Campbell, V. A. (2001). Health conditions, activity limitations, and
participation restrictions among older people with visual impairments. Journal of Visual
Impairment and Blindness, 95, 453-467.
Crews, J.E. & Long, R.G. (1997). Conceptual and methodological issues in rehabilitation
outcomes for adults who are visually impaired. Journal of Visual Impairment and
Blindness, March-April 1997.
Long, R.G., Crews, J. E. & Mancil, R. (2000). Creating measures of rehabilitation
outcomes for people who are blind and visually impaired: The FIMBA Project. Journal of
Blindness and Visual Impairment, 94 (5), 292-306.
Crews, J. E. (2000). Patterns of activity limitation among older people who experience
vision impairment. In C. Stuen, A. Arditi, A. Horowitz, M. A. Lang, B. Rosenthal, & K.
Seidman (Eds), Vision rehabilitation: Assessment, intervention and outcomes. Exton, PA:
Swets & Zeitlinger.
Crews, J. E. & Long, R. G. (1997). Rehabilitation outcomes among adults who are blind
and visually impaired: Conceptual and methodological issues. Journal of Visual
Impairment and Blindness, 92, 117-130.
Crews, J. E. (1996). Rehabilitation outcomes among older people who are visually
impaired. In M. Gozovsky (ed.), People who are blind or visually impaired–a look toward
the year 2000, (107-83). Proceedings, 27-28 February 1996, Kfar Hamaccabia Hotel, Tel
Aviv, Israel: Israel Association of Education & Rehabilitation and Rehabilitation Center
American Israeli Lighthouse.
Crews, J. E. (1994). The demographic, social, and conceptual contexts of aging and
vision loss. Journal of the American Optometric Association, 65 (1), 63-68. Reprinted in
English and Hebrew in M. Gozovsky (Ed.), (1996). People who are blind or visually
impaired–a look toward the year 2000. Proceedings. Tel Aviv, Israel: Israel Association
of Education & Rehabilitation and Rehabilitation Center American Israeli Lighthouse
Crews, J. E. (1991). Measuring rehabilitation outcomes and the public policies of aging
and blindness. In N. Weber (Ed.), Vision and aging: Issues in social work practice, (137151). New York: Haworth press. Reprinted in English and Hebrew in M. Gozovsky (Ed.),
(1996). People who are blind or visually impaired–a look toward the year 2000.
Proceedings. Tel Aviv, Israel: Israel Association of Education & Rehabilitation and
Rehabilitation Center of American Israeli Lighthouse.
Nieuwenhuijsen, E., Frey, W. & Crews, J. (1991). Measuring small gains using the
ICIDH severity of disability scale: Assessment practice among older people who are
blind. International Disabilities Studies, 13, 29-33.
To obtain reprints or inquire about John's new grants program, contact John E. Crews,
D.P.A., Centers for Disease Control and Prevention, 1600 Clifton Road, E-88, Atlanta,
GA 30333, Phone: 404-498-3013, Fax: 404-498-3060, E-mail: Jcrews@cdc.gov
14. SHARE YOUR ICF NEWS ITEMS WITH EVERYONE, SEND NEWS TO
PAUL PLACEK
Paul J. Placek, Ph.D.
Senior Statistician, CPHDSS
Office of the Center Director, National Center for
Health Statistics, CDC
3311 Toledo Road - Metro IV - Suite 2414
Hyattsville, MD 20782
tel 301-458-4437
fax 301-458-4022
PJP2@CDC.GOV
National Technical Assistance Center (National
Technical Assistance Center for Asian Americans and
Pacific Islanders with Disabilities)
Semi-Monthly e.News – May 1, 2004 (online at http://www.ntac.hawaii.edu)
ANNOUNCEMENTS
NTAC-AAPI Awareness of APA with Disabilities Training Institute - May 21
FREE registration! CRC Credits! – Still accepting registration - Contact: Amy Nawatani
at Amy.Nawatani@cds.hawaii.edu
San Francisco, CA
The National Technical Assistance Center for Asian Americans and Pacific Islanders
with Disabilities (NTAC-AAPI) is providing a one-day training institute for vocational
rehabilitation representatives and community based rehabilitation personnel at FAPAC's
19th Annual National Leadership Training Conference. For more information, see
“NTAC-AAPI Awareness of APA with Disabilities Training Institute - May 21, 2004”
located at NTAC-AAPIs website url: http://www.ntac.hawaii.edu and/or “ NTAC-AAPI
Members and Affiliates” located at the bottom of FAPACs website url:
http://www.fapac.org.
NTAC-AAPIs Hire.Us Program
Congratulations to Marketin, Lauck Enterprise, and Community Resources for
Independent Living for registering and becoming a part of our Hire.Us Employer
database! What is the Hire.Us program? Fast, Effective, and Free! The National
Technical Assistance Center’s HIRE.US program (Hire Interested and Ready Employees
in the U.S.) is a time-saving personnel resource. Employers nationwide identify both
temporary and permanent employees from qualified college students with disabilities in a
wide variety of fields. http://hireus.cds.hawaii.edu
Vocational Rehabilitation agency can also take advantage of our database to increase
employment opportunities of its job-ready clients! Send their resumes to be placed in the
HIRE.US database! NTAC-AAPI will actively recruit employers for those who entered
into this HIRE.US database. In addition, NTAC-AAPI will add your agency name to our
list of collaborators. This will allow for free advertisement on our website and once via
email in our periodic e-newsletter, with over 2,000 people on the distribution list. For
more information, please visit http://hireus.cds.hawaii.edu
NTAC-AAPIs Mini-Subcontract Proposals
AAPI is still in the process of accepting proposals for mini sub-contracts. Individuals and
organizations interested in collaborating with NTAC are encouraged to complete and
return the application form located at
http://www.ntac.hawaii.edu/products/mini_subcontracts.htm
"NTAC-AAPI co-sponsored Healing Chakra Workshop - Honolulu Brain
Respiration Wellness Center" – Thursday, June 10, 5:00-9:00 PM
Chakras are the central points for the interchange of energy flow in our bodies. Problems
with the Chakras translate into problems for the body, mind, and spirit. A change in the
Chakras signifies transformation of our body and mind. Complete health begins and ends
with the Chakras. Healing Chakra is a simple, daily practice to awaken your Chakra
System, improve your health and enhance your productivity. More information: Anita
Ahn, 808-942-0003 at Honolulu Brain Respiration Wellness Center.
NATIONAL & INTERNATIONAL
May 21, 2004: VSA arts of Hawaii-Pacific
"Artists Mean Business in Hawaii" and Statewide Artists Cooperative and Career
Coalition kick off year-long promotion of small business development promotion at 2004
Small Business Fair at Kapiolani Community College. http://smallbusinessfair.state.hi.us
, e-mail: Tax.Training.Outreach@hawaii.gov or call: (808) 587-1786 for more
information.
Registration for Mid-Year CANAR Conference - June 27-30, 2004
Vocational Rehabilitation for the Coeur d'Alene Tribe in Northern Idaho is hosting this
year Mid-Year CANAR (Consortia of Administrators for Native American
Rehabilitation) conference. Brochure and Registration is located at http://www.cdatribensn.gov/depts/edu/cr.html
The Washington Center for Internships and Academic Seminars Scholarship
Program for College Students with Disabilities (Youth Scholarship) - Applications
due June 14, 2004
The Washington Center for Internships and Academic Seminars, through a partnership
with the U.S. Department of Labor's Office of Disability Employment Policy, recently
announced a new academic internship program for students with disabilities: semester
internships in Congressional offices and federal agencies in Washington, DC. In addition,
the Washington Center will arrange workshops, seminars, lectures, embassy visits and
networking events for interns. Further information at: http://www.aapd-
dc.org/Internships/washintern.html.
Workshop on Asian American Culture - May 11, 2004
Clear Path is having a workshop on Asian American Culture and their Perception on
Disability on May 11th, 1:00-3:00PM at 3333 N. 7th Avenue, Phoenix, Arizona 85013.
For more information, contact Romeo R. Rabusa, Clear Path Recruitment Specialist at
602-262-5065.
Call for Paper Proposals for a Special Session – Deadline May 18, 2004
HCI International 2005 “Universal Design of Technologies that Render Web Content”
that will be held in July 22-27, 2005 in Las Vegas, NV, USA. The goal of this special
session is to explore how technologies that render web content can be designed to make
the web a more accessible and usable place for people with disabilities. This session
invites developers and researchers to submit papers on the universal design, evaluation
and usability of browsers, plug-ins, multi-media players, voice browser, pervasive
computing technologies. Please submit a title and abstract to Jon Gunderson, Coordinator
of Assistive Communication and Information Technology, at jongund@uiuc.edu, Voice
(217) 244-5870, Fax: (217) 333-0248.
Access 2004: The Small Business Summit - September 7-9, 2004
The U.S. Chamber of Commerce will host "Access 2004," a two-day Small Business
Summit, in Washington, DC, on September 7-9, 2004. Participants will have a unique
opportunity to help craft the Chamber’s small business policy agenda for 2005, receive an
election preview, and connect with elected officials. Small business owners from around
the country are encouraged to attend the event (Chamber members will receive a
discounted entrance fee). Space is limited, so please register early! Yolanda Jacobs
yjacobs@uschamber.com, Phone: (202) 463-5589
National Endowment for the Arts to Fund Study of Careers in the Arts for
Individuals with Disabilities - Deadline: May 24, 2004
The National Endowment for the Arts is seeking proposals for a three-year longitudinal
study aimed at developing new knowledge through quantitative and qualitative research
that explores the barriers people with disabilities face in accessing training and careers in
the arts. The study will examine effects, both economic and social, that arts training and
practice can have on individuals with disabilities.
http://www.nea.gov/grants/apply/RFP/CareersintheArtsStudy.html
Teleconference Presentation: The Community Living Exchange Collaborative OnLine – May 5, 2004
Resources for Everyone Working to Improve Home and Community Based Services"
with Leandre Waldo-Johnson of The Community Living Exchange Collaborative at
ILRU on Wednesday, May 5, 2004 at 3:00 p.m. eastern, 2:00 p.m. central, 1:00 p.m.
mountain, 12:00 noon pacific, 11:00 Alaska, 9:00 a.m. Hawaii. To receive
teleconferencing instructions, reply to sfinney@ilru.org via email with "Teleconference
5/5". Or, to participate via Web cast, send a reply to sfinney@ilru.org with "Webcast 5/5"
in the subject line. http://www.ilru.org/online/calendar.html
Call for Proposals for the 2004 National Service Inclusion Project Continuation
Minigrant – Deadline May 28, 2004
The emphasis of this minigrant will be to generate and implement member/volunteer
placement strategies with respective State Commissions and /or CNCS State Offices that
will result in the increase of the enrollment of individuals with disabilities in national
service programs. For more information, contact Jason P. Wheeler, Toll-free: 888-4910326 (voice/TTY), jason.wheeler@umb.edu.
National Women’s Check-Up Day – May 10, 2004
The University of Illinois UCE has collaborated with the UIC's Center of Excellence
(COE) in Women’s Health to hold events such as screenings and a resource kiosk
specific to women with disabilities. http://www.4woman.gov/WHW/2004
Graduate Research Grants Program - Proposals due July 2004
Organization for Autism Research (OAR) will award four small grants to graduate
students pursuing Master’s or Doctoral degrees. These grants will be awarded to those
students whose proposed research best fits with OAR’s research interests and priorities,
namely practical research into the daily challenges of autism and related disorders.
Proposals will be due in July, with grant awards announced in September. Please contact
Mike Maloney or Sarah Snow at (703) 351-5031 for more information or send an email
to oar@researchautism.org.
The Washington Center for Internships and Academic Seminars Scholarship
Program for College Students with Disabilities
The Washington Center is able to provide a total of 50 competitive scholarship awards in
the amount of $7,430 for students with disabilities interested in working in the executive,
judicial or legislative branches of the federal government during the fall 2004 semesters
(scholarships are not available in the summer). For more information contact JT
Taransky, The Washington Center for Internships & Academic Seminars,V/TTY: 202457-0046. http://www.aapd-dc.org/Internships/washintern.html
NEADS Conference 2004 Call for Speakers – Deadline: August 13, 2004
The National Educational Association of Disabled Students invites interested individuals
to serve on one of three workshop panels at our next conference entitled: "Right On!"
which will take place at the Delta Hotel and Suites, Ottawa, Ontario, Canada, on
November 13th to 14th, 2004. Speakers will include students, consumers, advocates,
professionals and anyone else interested in the conference themes. Detailed information
on themes, suggested topics and a web-based speaker submission form can be found on
our Conference Site located at http://www.neads.ca/conference2004. Any questions can
be directed to Jason Mitschele, Conference 2004 Chair at conference2004@neads.ca
Asian Division of the Library of Congress invites you to join its Friends Society
Dr. Hwa-wei Lee, an internationally well-known librarian, came to Washington out of
retirement in Ohio and is leading an exciting program with a very talented staff. You can
join the Friends Society in many ways - as an individual, a family, or an organization;
you can also serve as a volunteer or become a donor. Your contributions will be tax
deductible.
http://www.lib.washington.edu/SouthEastAsia/vsg/conf/asian%20division%20friends.ht
ml
Call for submissions – Deadline: June 1, 2004
Association on Higher Education And Disability (AHEAD) has issued a call for
submissions of writing and artwork, for an anthology on transition to college and the
first-year experiences of college students with disabilities.
http://www.ahead.org/network/anthology.php
POSITIONS AVAILABLE
READER (OFFICE AUTOMATION) GS- 0303 – Closing date: 05/12/2004
Incumbent provides reader services to a visually impaired employee. Provides reader
assistance by reading and/or converting to useable form such as audiotape, written and
printed materials received by the assisted employee. For additional information regarding
this announcement, call either Ike Gilbert at (206) 220-7813.
Recreation Therapist
Creative, organized, self-starter to coordinate and implement community and facility
based social and recreation activities for adults with disabilities. CTRS with some
supervisory experience required. For more information, Ph: 708/352-3580, FAX:
708/352-9728, Email: pam@hhrehab.org
Program Coordinator-SDPAS Department
Summit Independent Living Center is taking applications for a program coordinator in
the Self-Directed Personal Assistance Services (SDPAS) Department in the Missoula
Office. This position shares program coordination responsibilities with the SDPAS cocoordinator and is responsible for working with a caseload of 60 + consumers who direct
their own in-home personal care services. For more information regarding the job duties,
qualifications, salary and benefits, or application process please contact Mike Mayer at
728-1630 or 800-398-9002 toll-free.
Case Manager – The Arc of San Diego
Case Manager needed to work with Adults with Developmental Disabilities. Supervises,
maintains, and reviews the case management and client record keeping systems of the
Work Activity Center. Works in close coordination and cooperation with the Program
Manager and funding source representatives. Develops Program Plan with consumer and
appropriate involved others designed to assist and encourage the consumer in achieving
his/her employment goal. For more information, Ph: (858)715-3780, FAX: (858)4679517, Email: cdahlke@arc-sd.com
Executive Director
The Advocacy Center for Persons with Disabilities, Inc. (the “Center”) operates Florida's
federally mandated and state designated protection and advocacy system for persons with
disabilities. The Executive Director is responsible for managing the operations and staff
of the Center and reports directly to the Center's Board of Directors.
http://www.advocacycenter.org/news/employment.htm
Job Coach Case Manager - Goodwill Industries of Greater NY & Northern NJ
Work with adults who have mental retardation and developmental disabilities; helping
them to obtain and maintain a job. This requires traveling to multiple work sites
throughout NYC working intensively with clients and employers. For more information,
Email: bjackson@goodwillny.org
Resource, Information, Support and Empowerment (RISE) - IL Specialist/Outreach
Specialist
The Independent Living Specialist/Outreach Specialist is responsible for assisting
persons with disabilities to receive appropriate services, which will enable them to live
more independently. Develop contacts within community organizations and provide
services to consumers in the communities within the service delivery area. Send cover
letter and resume to: Cheryl Bass, Executive Director, RISE-Resource, Information,
Support and Empowerment, 755 South 11th Street, Suite 101, Beaumont, Texas 77701,
(409)838-4499 FAX or Email to RISE@prodigy.net. To request this announcement in
alternative format, please call (409)832-2599 (V/TDD).
RESOURCES
Accessible Web Publishing Wizard for Microsoft® Office
The Web Publishing Accessibility Wizard for Microsoft® Office offers an alternative to
the native Web Publishing feature in Office. The Accessibility Wizard simplifies the task
of converting PowerPoint presentations, Word documents, and (in the future) Excel
spreadsheets to accessible HTML through an easy-to-use user interface and automation
of many of the details of conversion.
http://cita.rehab.uiuc.edu/software/office/overview.html
Independent Living Institute
The Independent Living Institute offers resources for persons with extensive disabilities
and develops consumer-driven policies for self-determination, self-respect and dignity.
http://www.independentliving.org
Disability Online
DDWP develops and implements disability policy and program initiatives related to the
workforce system, including a cross-agency collaboration to address structural barriers to
employment for individuals with disabilities. DDWP supports the New Freedom
Initiative to improve career and employment outcomes for people with disabilities
through innovative skill training and systems change grant activities.
http://www.doleta.gov/disability
"Write N Read"
Handwriting to Text-to-Speech solution for those with literacy challenges.
http://www.colligo.us
U.S. Department of Labor’s Working Partners for an Alcohol- and Drug-Free
Workplace Web site
The Working Partners Web site features the Drug-Free Workplace Advisor, an interactive
tool that helps employers build tailored, drug-free workplace policies and programs; the
Substance Abuse Information Database, an online repository of hundreds of documents
related to workplace alcohol and drug abuse; basic information about substance abuse
and how it affects employment; and directories of national, state and local resources as
well as state laws that may assist employers in making their businesses drug free.
http://www.dol.gov/workingpartners/welcome.html
PowerTALK
The PowerTalk program automatically speaks the text on a Microsoft PowerPoint
presentation using the Microsoft Speech API. It has been created to help those who have
difficulties talking whilst presenting or for an audience that contains people with visual
impairments. http://www.meru.org.uk/speechmakers
INSTITUTES / CONFERENCES
Techniques for Creating and Instructing with Tactile Graphics - May 6-8, 2004
California School for the Blind, Fremont, CA
Participants will have the opportunity to gain hands-on experience with various methods
of producing tactile graphics, while also learning strategies for determining the form and
content of a tactile graphic. Email: bgallman@afb.net
COSD 5th Annual National Meeting 2004 – May 10-11, 2004
Career Opportunities for Students with Disabilities (COSD) is a unique consortium
composed of large and small universities, well - known national employers and US
Government agencies focused on the career employment of college graduates with
disabilities. http://www.cosdonline.org
National ADA Symposium & Expo – May 11-13, 2004
The National ADA Symposium, hosted by the ADA & IT Technical Assistance Centers
has earned the reputation as premier training event available on the Americans with
Disabilities Act and related disability issues.
http://www.adaproject.org/NationalADASymposium.html
3rd Annual Asian Diversity Career Expo – May 13, 2004
New York, NY
Companies and organizations will be present to represent a number of industries such as,
finance, transportation, defense, retail, government, telecommunications, law, healthcare,
pharmaceutical, IT, consumer products and others.
http://www.asiandiversity.com/event/index.html
Employment, Medicaid and Social Security: Collaborations at Work—A National
Conference on Change - May 16–19, 2004
Minneapolis, MN
The Employment, Medicaid and Social Security Conference is a premiere national event
designed to focus exclusively on removing barriers to Medicaid and Social Security
funding for effective workplace supports. This National Conference will provide an
opportunity for professionals and consumers to learn cutting edge funding practices for
employment services from those who have developed them.
http://www.worksupport.com/topics/ssw.asp
19th Annual National Leadership Training Conference and Agency Exhibits - May
17-21, 2004
Hyatt Regency Embarcadero Hotel, San Francisco, CA
FAPAC conference will have programs and workshops that highlight the contributions of
Asian American military heroes-- including purple heart recipients and other military
awardees, and distinguished Asian American veterans from foreign wars. It will
showcase programs for APAs with disabilities, Native Americans, civil rights, and
supervisory/management issues, and current legislation concerning APAs.
http://www.fapac.org
NTAC-AAPI Awareness of APA with Disabilities Training Institute - May 21, 2004
San Francisco, CA
The National Technical Assistance Center for Asian Americans and Pacific Islanders
with Disabilities (NTAC-AAPI) is providing a one-day training institute for vocational
rehabilitation representatives and community based rehabilitation personnel at FAPAC's
19th Annual National Leadership Training Conference.
http://www.fapac.org/confinfo/index.htm
APSE INSTITUTE – May 20-June 22, 2004
The APSE Network on Employment Institute now offers training by telephone. Topics
Include Job Development, Job Coaching, Self-Employment, Medicaid, Transition,
Employment Public Policy, Organizational Change, Professional Standards, and
Leadership http://www.apse.org/TeleTraining/Tele_Training%20Main.htm
15th Annual NAWDP Conference - May 23-26, 2004
Portland OR
National Association of Workforce Development Professionals Conference explores
identifying and developing talent. It is perhaps one of the most important – yet most
challenging – functions of those engaged in employment and training. Federal guidelines
demand that we look at clients through a lens of “risk factors” and “barriers.” Find out
what’s really going on in Washington, and how you can help turn workforce development
into a priority for Congress and the Administration.
http://www.nawdp.org/conference.htm
Sprout Film Festival – May 22-23, 2004
By presenting films of artistry and intellect, the festival hopes to reinforce accurate
portrayals of people with developmental disabilities and expose the media and general
public to important issues facing this population. The goal is an enjoyable and
enlightening experience that will help breakdown stereotypes, promoting a greater
acceptance of differences and awareness of similarities. http://gosprout.org/film
TRANSED 2004: 10th International Conference on Mobility and Transport for
Elderly and Disabled People – May 23-26, 2004
Hamamatsu City, Japan
Previous TRANSED conferences have promoted national and local transportation and
development policies to include objectives relating to the needs of people with reduced
mobility. The 10th International Conference on Mobility and Transport for Elderly and
Disabled People is designed to help these objectives with getting into action.
http://transed.jp
Partners Building Bridges: Maintaining High Quality Services in Challenging Times
– May 25-27, 2004
Washington, DC
A national training conference for state coordinators and related professionals serving
individuals who are deaf, deaf-blind, hard of hearing and late deafened.
http://www.ccer.org/confcal.htm#Emerging%20Issues
Announcing VSA ART EXPO: Vision, Strength, & Artistic Access – May 29-30,
2004
Expo to highlight Career Paths for Artists with Disabilities and will include free
workshop strands. Located at Hawaii Community College. To register, contact Angela at
808-966-8707. See website for more information - http://www.vsarts.hawaii.edu
16th Annual Postsecondary Disability Training Institute (PTI) - June 8-12, 2004
Grand Summit Resort Hotel ~ Mt. Snow, Vermont
Come learn skills you'll use every day! The objective of this Training Institute is to assist
concerned professionals to meet the unique needs of college students with disabilities.
Participants can select from a variety of Strands and Single Sessions taught by experts in
the field that provide participants with in-depth information and adequate time for
questions and follow-up activities. http://vm.uconn.edu/~wwwcped/04pti.htm
TOOLS FOR LIFE: A 21st Century Look at Assistive Technology and Services –
July 9-10, 2004
Blaisdell Exhibition Center, Honolulu
The Tools for Life Expo and Conference is a collaborative exhibit with concurrent
workshops designed to bring information to individuals with disabilities, their families,
and advocates regarding civil rights laws and technological support options to maximize
independence in society. For information, contact Francine Wai (DCAB) at
accesshi@aloha.net (ph. 586-8121 V/TTY) or Barbara Fischlowitz-Leong (ATRC) at
barbara@atrc.org. (ph. 532-7110 V/TTY or 1-800-645-3007)
The Twentieth Computers and Writing Conference - June 10-13, 2004
Honolulu, Hawaii
Some of the presentation topics include: Languages, Technologies, and Bodies.
Intersections of race, ethnicity, gender, sexuality, and different forms of bodily "ability"
with technology-based writing. issues of accessibility and adaptive technologies.
http://www.hawaii.edu/cw2004
Mid-Year Consortia of Administrators for Native American Rehabilitation
(CANAR) Conference-– June 27-30, 2004
Worley, Idaho
This conference will not only come from directors and educators, but grass roots
counselors who deal directly with consumers, and who on a day to day basis, assist
clients in gaining their identify, self-esteem and gaining a sense of self worth back into
their lives. http://www.cdatribe-nsn.gov
Impact 2004: 6th Annual WebCT User Conference – July 11-15,2004
Orlando, FL
Educators, course designers and system administrators will come together from all over
the world to share their knowledge of WebCT and online teaching and learning.
http://www.webct.com/2004
Third Annual Bridges to Employment Conference: Exploring Career Opportunities
for Latinos with Disabilities – July 14-16, 2004
Chicago, IL
The conference will provide a national forum about issues concerning disabled Latinos
and employment, and offer a variety of employment and technology training
opportunities. http://www.proyectovision.net/english/bridges/index.html
RESNA's 27th International Conference - June 18-22, 2004
Orlando, FL
RESNA is a community of people who share a passion. Our passion involves working
with people with disabilities and technology. Our annual conference is an expression of
that passion. Come and join an interdisciplinary gathering of professionals as diverse as
the technology and people with whom we work.
http://www.resna.org/Conference/2004Conference/Conference2004.php
?PHPSESSID=0e65a807a3125aa661c02503966906f5
Workforce Innovations 2004 – July 19-21, 2004
Sponsored by the United States Department of Labor’s Employment and Training
Administration and co-sponsored by the National Association of Workforce Boards, the
annual Workforce Innovations conference provides attendees vital knowledge of the
latest federal policy developments and funding opportunities, and best workforce
investment system practices from across the nation. This year’s proposed conference
tracks are: Policy, Budget and Legislation; Building a Demand-Driven System; and OneStop Expectations, Enhancements and Integration.
http://www.workforceinnovations.org/index.cfm
Discover 70,000 Skilled Workers: Chamber-Job Corps Showcase 2004 - July 21,
2004
Washington, D.C.
This showcase will bring together a group of executives who understand the challenges
faced by their members in finding skilled entry-level employees. Participants will include
chamber-Job Corps partnership teams, chamber executives, and industry association
executives. It will incorporate lessons learned from chamber-Job Corps demonstration
initiatives, presentations by workforce and business leaders, a showcase of successful
chamber-Job Corps partnerships from across the nation, and plenty of networking
opportunities. http://www.uschamber.info/cwp/noticedescription.tcl?newsletter%5fid=2626270
2004 NDDS National Conference - July 22–25, 2004
The 2004 conference, "Empowering, Reaching, Achieving," will bring together parents,
family members, professionals, and teens and adults with Down syndrome from across
the country for education, networking and celebration.
http://www.ndss.org/content.cfm?fuseaction=NwsEvtEvtConfNC
2004 National Youth Leadership Conference - July 24–27, 2004
Washington, D.C.
Conference goals include helping prepare the next generation of disability leaders and
identifying ways to improve policies and supports for young people with disabilities.
http://www.nyln.org/apply/2004conference.html
Disability Studies: Putting Theory Into Practice – July 26 – 28, 2004
Lancaster University, UK
Disability Studies is concerned with the inter-disciplinary development of an increasing
body of knowledge and practice, which has arisen from the activities of the disabled
people's movement, and which has come to be known as 'the social model of disability'.
The social model of disability locates the changing character of disability, which is
viewed as an important dimension of inequality, in the social and economic structure and
culture of the society in which it is found, rather than in individual limitations.
http://www.lancs.ac.uk/depts/apsocsci/events/dsa.htm
The Fifth International Conference on Higher Education and Disability - July 2730, 2004
Innsbruck, Austria
THEME: Scanning the Horizon: An International Collaboration On Higher Education
and Disability. This conference will equip participants with tools and resources to build
successful programs and further develop our network of international colleagues.
http://www.unotrac.org/presentations.html
Leadership Exchange in Arts and Disability - August 12 - 14, 2004
Washington, D.C.
Join this unique national professional network of accessibility coordinators, managers
and directors in the cultural arts. The network is devoted to training emerging leaders and
improving existing programs and facilities in an effort to make the cultural arts accessible
to all. For additional information please contact the Kennedy Center Accessibility Office
at (202) 416-8727 (voice) or (202) 416-8728 (TTY), (202) 416-8802 (fax), or via email at
access@kennedy-center.org
Rehabilitation Services Administration’s 2004 National Employment Conference,
Employment and DisAbility 2004: The VR – Business Partnership - August 16-18,
2004
Washington, D.C.
The 2004 national event represents a significant departure from previous conferences. It
will target the infrastructure of the State vocational rehabilitation (VR) agency, especially
the leadership and professional staff responsible for creating and maintaining employer
development, business relations and large-scale job placement. For additional
information about the 2004 conference, please contact Jenn Rigger at 202-260-2179 or
jenn.rigger@ed.gov.
Access 2004: The Small Business Summit - September 7-9, 2004
The U.S. Chamber of Commerce will host "Access 2004," a two-day Small Business
Summit, in Washington, DC, on September 7-9, 2004. Participants will have a unique
opportunity to help craft the Chamber’s small business policy agenda for 2005, receive an
election preview, and connect with elected officials. Yolanda Jacobs
yjacobs@uschamber.com, Phone: (202) 463-5589
NEADS Conference 2004: Right On! – November 13-14, 2004
Ontario, Canada
Speakers will include students, consumers, advocates, professionals and anyone else
interested in the conference themes. Detailed information on themes, suggested topics
and a web-based speaker submission form can be found on our Conference Site located at
http://www.neads.ca/conference2004. Any questions can be directed to Jason Mitschele,
Conference 2004 Chair at conference2004@neads.ca
RESEARCH / PUBLICATIONS
Accommodating Employees with Hidden Disabilities
The Americans with Disabilities Act (ADA) defines “disability” as an impairment that
“substantially limits one or more of the major life activities.” Although some disabilities,
such as inability to walk, missing or impaired limbs or severely impaired vision, are easy
to observe, many disabilities are not. http://www.dol.gov/odep/pubs/ek00/hiddenemp.htm
2004 RED BOOK
This book is a general reference source about the employment-related provisions of
Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI)
programs. http://www.ssa.gov/work/ResourcesToolkit/redbook.html
TBI Research Review of the New York Traumatic Brain Injury Model System
The aim of the TBI Research Review is to summarize current research on traumatic brain
injury (TBI), offer suggestions for future research planning and suggest application of
research findings to clinical practice and policy. The focus in this first issue is on POSTTBI DEPRESSION. Additional copies may be found at
http://mssm.edu/nytbims/whats_new.shtml or
http://mssm.edu/nytbims/publications.shtml). This document may be downloaded and
distributed to interested individuals and organizations without cost.
Work-Based Learning — Ages 14 to 25 Years
Work-based learning is a supervised program sponsored by an education or training
organization that links knowledge gained at the worksite with a planned program of
study. Experiences range in intensity, structure and scope and include activities as diverse
as site visits, job shadowing, paid and unpaid internships, structured on-the-job training,
and the more formal work status as apprentice or employee. http://www.ncwdyouth.info/resources_&_Publications/hot_Topics/work_Based_Learning/index.html
Search Engine Optimisation and Accessibility
This article shows how search engines, through their algorithms, and search engine
optimisation, have led to a growing interest in making web content more accessible.
http://www.e-bility.com/articles/accessibility_optimisation.shtml