Disability World
A bimonthly web-zine of international disability news and views
Available on the web at http://www.disabilityworld.org
Contents, Volume 26, December 2004 – February 2005
International News & Views ............................................................................................... 3
Disabled People's Organizations Working in Tsunami-Affected Areas ......................... 3
Tsunami & Disability: Report of Visit to Indian Islands ................................................ 6
Terror Wave: Tsunami and Disability .......................................................................... 10
Reports from RI on the 5th UN Ad Hoc Meetings on Disability Convention .............. 12
Jordan: Prince Raad bin Zaid in Support of the UN Convention ................................. 17
Japanese Government & NGO Partnership on UN Convention ................................... 21
Genetic Technology and the UN Disability Convention .............................................. 23
Why Sports Should Be Included in Disability Rights Convention ............................... 33
As strong as the weakest link: An incentive to development organisations and
governments to make disability an integrated element of policy and action ................ 36
Georgian Police Beat Disabled Demonstrators on International Disability Day .......... 41
Inclusive Education in Russia: a status report .............................................................. 43
Amartya Sen: Helping Disabled People Out of the Shadows ....................................... 44
Summary of RI/International Paralympic Committee Symposium .............................. 46
A Glimpse of the New RI Executive Committee.......................................................... 49
Disability Rights Convention Needed to Counter Discrimination ............................... 52
Honoring a Disability Rights Pioneer: Ed Roberts' 504 Victory Speech ..................... 53
A Backward Glance at the Best of 2004 ....................................................................... 55
Yemen: Disability Profile ............................................................................................. 58
International News Briefly ............................................................................................ 66
Independent Living ........................................................................................................... 69
Applying the Minority Perspective to Disability in Afghanistan ................................. 69
Meeting Future Challenges of Disability in Aging Societies ....................................... 76
Disability rights take off with proposed EU air passengers' Regulation ...................... 78
Interaction of Future Time Orientation & Spinal Cord Injury ...................................... 79
New Publications from Mobility International USA .................................................... 80
News about Vacation Home Exchange, Independent Living Institute ......................... 81
Independent Living Briefly ........................................................................................... 82
Access & Technology ....................................................................................................... 83
European Union and Transport ..................................................................................... 83
21 Individuals, Organizations & Governments Win Universal Design Awards .......... 84
Latin Americans Adopt Rio Charter for Universal Design .......................................... 88
Universal Design for Disabled People Draws International Support ........................... 91
Access & Technology Briefly..................................................................................... 111
Employment .................................................................................................................... 113
Tribute to Joanne Wilson, Departing RSA Commissioner ......................................... 113
Australia: Supported Employment in the Public Sector ............................................. 116
UK Disability Rights Commission Comments on New Benefits Plan ....................... 117
To Tell or Not to Tell: Disability Disclosure and Job Application Outcomes ........... 118
Innovative Employment Inititiatives in Russia ........................................................... 118
Back-handed Support for New South African Labor Law?........................................ 120
Employment Briefly.................................................................................................... 121
Governance & Legislation .............................................................................................. 122
Interview with Anne Begg, Member of Parliament, U.K. .......................................... 122
Interview: Meeting the Challenge of Starting Over in Mexico .................................. 130
Interview: Judy Heumann, World Bank Advisor on Disability & Development ....... 134
Interview: Lex Frieden Assesses Impact of National Council on Disability .............. 142
Interview with Bengt Lindqvist, former Swedish Minister ........................................ 150
Improving Policies, Transportation & Education: Interview with Ann Marit Saebones,
former Mayor of Oslo, Norway .................................................................................. 157
Disabled Persons in Positions of Governance: an analysis ......................................... 162
Analysis of Reauthorization of U.S. Individuals with Disabilities Education Act ..... 185
Disabled Thais Call for End to Discrimination........................................................... 188
Governance & Legislation Briefly .............................................................................. 188
Arts & Media .................................................................................................................. 193
Disability Portrayals Dominate Academy Awards Again .......................................... 193
Human Rights Watch International Film Festival ...................................................... 194
UK Disabled Actor Rivets Off-Off-Broadway Audience ........................................... 195
Award for Film About Human Rights of Disabled Paraguayans ............................... 197
Ragged Edge E-Letter Critiques New Films Supporting Euthanasia ......................... 198
UK TV Networks Launch New Initiative for Disabled Actors .................................. 199
Website Shows Videos of People with Disabilities .................................................... 200
Arts & Media Briefly .................................................................................................. 201
Women ............................................................................................................................ 203
Pakistan Society for Disabled Women, Newsletter for 2004 ..................................... 203
Recent Books Concerning Women with Disabilities.................................................. 208
Color of Violence Conference: adding disability to anti-violence actions ................. 210
Women Briefly............................................................................................................ 212
Children & Youth ........................................................................................................... 213
High Praise for Disability-Inclusive Early Childhood Campaign in Maldives .......... 213
Education in Russia: Christina, 5, Wins Her Court Case ........................................... 217
Russia: Young disabled activists tackle attitudes in mainstream schools................... 218
Disabled Youth Activist Teams Launched in Russia & Newly Independent States .. 220
My Wonderful Mum: Children's Book from Vietnam ............................................... 227
Children & Youth Briefly ........................................................................................... 230
Resources & Book Reviews............................................................................................ 232
Disability Studies Quarterly Winter 2005 Issue Available Online ............................. 232
February EQUITY: Building an Inclusive Ownership Society .................................. 233
January 2005 Global Access Travel E-Zine ............................................................... 235
Iranian Rehabilitation Journal Launched .................................................................... 237
Book Review: Point Source -- thriller involving Multiple Sclerosis .......................... 238
Book Announcement from South Africa: Nothing About Us Without Us ................. 241
Resources on Disability Statistics ............................................................................... 243
Newsletter on U.S. Disabled Latinos: Proyecto Visión .............................................. 243
International News & Views
Disabled People's Organizations Working in TsunamiAffected Areas
The Global Partnership for Disability and Development has created the first compilation
of information on the work of disabled persons organizations (DPOs) in the context of the
tsunami. The information was obtained from a listserve created by the World Bank's
Disability and Development Team for members of DPOs. This DPO summary is being
incorporated into a larger report by the Civil Society Team, which will also include
information on how foundations are reacting and, of course, NGOs. The Bank's media
team is also incorporating some of this information into its daily updates for the crisis
team and managers.
The Disability and Development Team expects to continue receiving information from
DPOs via the listserve, and additional information will be compiled as it comes in over
the next few weeks.
Disability News Ticker
Please visit the Disability News Ticker at
http://www.abilityinfo.com/ticker/tsunamidisability.html for a listing of recent news
articles on how disabled people are being affected by the tsunami.
Handicap International (HI)
Following the tsunami on December 26, the France-based DPO, Handicap International,
has been working around the clock to provide emergency relief services in Sri Lanka. An
emergency program to help the victims of the natural disaster has been set up. HI is
focusing on displaced people, people with temporary or permanent disability and
vulnerable populations, such as children, pregnant women and elderly people. As HI
teams were already working in the area, it was able to provide help within hours of the
tsunami. It is currently concentrating its efforts on the districts of Batticaloa and Ampar,
south east of Sri Lanka where 13,000 people have died and a further 430,000 are
displaced. HI has evaluated the needs and identified the main risks, such as heavy
physical disability due to injuries and lungs infections due to swallowing sea water. HI is
open to a collaboration with the Bank on these efforts. Contact: Florence Thune;
www.handicap-international.org .
Disabled Peoples' International Indonesia (DPI Indonesia)
DPI Indonesia is focusing on what it calls the most fragile victims of the tsunami, the
disabled. The tsunami has affected people both mentally and physically, and DPI
Indonesia volunteers in Aceh estimate that hundreds of persons are newly disabled in just
one area alone. DPI Indonesia is sending new and used assistive devices to Aceh, such as
wheelchairs, white canes, and other needed items. Contact: Mr. H. Siswadi at
ppcindo@eudoramail.com ; www.dpiap.org .
Indonesian Disabled Peoples Association (IDPA)
IDPA has set up a recovery center for the newly disabled in Aceh, and it has opened a
crisis center in Jakarta.
Disabled Peoples, International, Asia-Pacific Regional Development Office (RDO)
RDO has now collected information related to disabled persons affected in Indonesia, Sri
Lanka and India and Thailand, which it has provided to other aid agencies. It is
concerned with assessing the number of newly disabled people, how to identify them,
approach them, and provide assistance to them. RDO is also looking for ways to
introduce accessibility issues to the reconstruction effort. RDO sees the evacuation of
disabled persons as a serious challenge. In Thailand, a team of teachers and students from
Redemptorist Vocational School for the Disabled (RVSD) was dispatched to Puket
province. They jointly worked with other agencies to develop a website, and to enter
data. Contact: Mr. Topong Kulkhanchit, Regional Development Officer, at
rdo@dpiap.org; www.dpiap.org .
DPI-Thailand
DPI-Thailand is working with NGOs in the affected areas to create a comprehensive
relief plan. Contact: Ms. Panomwan Boontem, dpith@ksc.th.com; www.dpi.org .
GTZ (German Government's Aid Agency)
Specific needs for people with disabilities will be an issue in the medium term. Initially,
GTZ has focused on supplying drinking water, health risks, and the reconstruction of
schools. It is offering its expertise in the area of orthopedic aid and prosthetics. It is open
to collaborating with the Bank. Contact: Rudiger Krech at Ruediger.Krec@grz.de;
www.gtz.ed/jahresthema .
Rehabilitation International (RI)
RI has an extensive network of members and organizations worldwide and in Asia. It is
looking to assist with programs, guidelines and standards for urban and rural areas
(accessibility, communications, transportation, housing, employment and education). It is
particularly interested in promoting accessibility standards for reconstruction. RI is
looking to collaborate with the Bank. Contact: Michael Fox; www.riglobal.org .
Asia and Pacific Development Center on Disability (APCD)
APCD has developed plans to assist the situation in the immediate, medium and long
term. Staff have been deployed to Puket to assist in rescue efforts. It believes there may
be a large number of amputees (legs/arms) due to injury and infections. It estimates there
may be a 20 percent increase in the number of persons with disabilities due to the
disaster. Workshops on a self-help approach will be created and experts on disability will
provide consultations. APCD will advocate accessibility standards in reconstruction
(barrier-free and universal design) so that all new buildings will be accessible to disabled
people. APCD is also collecting information that will be put up on a website that is being
created ( http://www.apcdproject.org/ ). APCD will send a mission to Maldives and Sri
Lanka in May or June, and a mission Indonesia in March. Contact: Mr. Akiie Ninomiya
at info@apcdproject.org .
UNESCAP
UNESCAP is creating a website called Disaster Management and Prevention within
UNESCAP ( http://www.unescap.org/icstd/dmp.aspx ). It expects the Commission
session scheduled for April 22-28 to prioritize the tsunami response at the project level.
Also, its disability subprogram is planning a workshop on July 5 that will focus on
community based rehabilitation and poverty rehabilitation of persons with disabilities and
this will also incorporate the tsunami response. Contact: Aiko Akiyama at
akiyama@un.org; www.unescap.org/esid/psis/disability/index.asp .
Cambodian War Amputee Rehabilitation Society (CWARS)
CWARS would like the Bank's Global Partnership on Disability and Development
(GPDD) to take on a major role in terms of accessible infrastructure, and providing aid
and emergency health care to disable people in the affected region. Contact: Sam Oeurn
Pok at samoeurn@online.com.kh ; www.cwars-landminevictims.org .
Sight Savers International (SSI)
SSI will consider the provision of financial assistance to any of its partners (NGOs or
governments) who are actively involved in helping with eye care-related relief efforts in
the affected areas. In the short term, relief efforts will support the visually impaired with
accommodation, food, clothes, etc. Additionally, SSI will support schools and institutions
of the blind that have been affected by the flooding and eye-related medical services at
base hospitals. Longer term, SSI will refurbish and re-equip its partner's eye hospitals,
education units for children, etc. SSI is aware of some schools for the blind and some
health and eye units that have been damaged. It knows of 12 blind children who drowned.
SSI believes its services will be most valuable in the medium to longer term where it can
help with reconstruction. Contact: Wilma Van Berkel at WVanBerkel@sightsavers.org;
www.sightsavers.org.uk .
The Directorate General of Primary and Secondary Education and the Directorate
of Special Education of Indonesia (DITPLB)
DITPLB has begun work on physical reconstruction. Many NGOs and organizations have
contributed to the government's efforts. Many companies and individuals throughout
Indonesia have also made substantial contributions. It notes that field observation have
revealed that 14 of 36 special schools have been completely destroyed. Two-thirds of the
staff of provincial education offices are either missing or dead, and many students are
missing. It estimates an increase in the number of disabled people. Attention to
accessibility during reconstruction is strongly advocated. Contact: Dr. Mudjito at
mudjito@ditplb.or.id .
Tsunami & Disability: Report of Visit to Indian Islands
By Rama Chari & Rajul Padmanabhan. Report provided by Topong Kulkhanchit,
Disabled People's International Asia office (dpiapro@loxinfo.co.th).
National Centre for Promotion of Employment for Disabled People (NCPEDP) in
association with Disabled People's International - India and Vidya Sagar has launched a
campaign to get disability issues included in the relief and rehabilitation work for the
victims of Tsunami. As part of our efforts to gather facts and information, we visited
Andaman & Nicobar Islands, which has suffered the heaviest loss in India, due to
Tsunami.
During our two-day visit (19th & 20th January), we met with the Hon'ble Lt. Governor,
senior officials of Welfare & Health Ministries, other Government officials involved in
relief, NGOs doing relief work and common non-disabled and disabled people of the
region.
We were accompanied by two local people -- Shri J.K. Mukherjee, a person with
disability from the Andaman District, who is also running an association for disabled
people in the region and a partner in the National Disability Network (NDN) and Smt.
Piyali Halder, who is a parent of a child with Cerebral Palsy, living in Middle Andaman.
The objective of the visit was not only to do gather data / information on the number of
people disabled as result of Tsunami but also to know about the persons with disabilities,
who have survived, but are affected by the disaster. Our aim was also to understand the
overall disability scenario in the region (administrative framework; implementation of the
Disability Act, existence of disability NGOs - their functioning & reach, awareness
levels, etc.), which will help in planning the work for the future.
People's Voices:
"Disabled people in the Islands are worse off than Adivasis," Hon'ble Lt. Governor.
"There was a polio epidemic in Car Nicobar Island several years ago, which resulted in
about 700 people becoming disabled. I went there three days after the disaster but could
not locate a single disabled person! They may be dead, as they may not have been able to
run up the hills to save their lives. Those who could run have survived", Dr. S.P. Saha,
Head of Orthopaedic Department in G.B. Pant Hospital, Port Blair.
"1000 - 1500 cases of injury, most of them due to panic than Tsunami. They are in
various hospitals. I can only give information about my hospital. Many have fractured
their limbs; about 10 cases required major surgeries, 110 were given aids & appliances
(many were disabled from the past who had lost their appliances); one case of
amputation, some cases of spinal injury, due to earthquake", a doctor.
"There is a girl whose lower extremity has been completely paralysed, as she was
immersed in water for 2 days, before she was rescued. Her other family members were
washed away by Tsunami. She has refused to come to Port Blair for treatment. She is
living in a camp in Car Nicobar Island", Shri Uday Kumar, Director, Social Welfare.
"There are an innumerable number of people in trauma. We don't know how many people
will cope up and how many will need long term counselling," doctor in G.B. Pant
Hospital.
"The Government will give jobs to non-disabled people and I may get left behind. I am
not even educated. I do not want to go back to the island. It is not safe there any more," a
young fisherman with disability from Hudson Bay.
"The prevalence of disability is quite high among the Nicobari tribe, as a result of
consagenous marriage, under nourishment, etc," parent of a disabled child.
Disability & Tsunami:
 The total number of injured due to Tsunami is 1489, according to the Report
prepared by the Coordinating Officer, Port Blair.
 Exact number of people who have been severely injured resulting in physical
disability is not known.
 No special effort is being made by the Government to find out the exact number
of people who have become disabled from Tsumani and also about those with
disabilities who have survived the disaster and are in various relief camps.
 We visited only two relief camps in Port Blair - 1. ITF Camp and 2. HADO
Telugu School. We made one announcement and 28 disabled people identified
themselves in ITF Camp and 15 disabled people came forward in the HADO
Telugu School. There were children, youth and adults with different disabilities.
This finding was totally contradictory to the Director Social Welfare's claim that
there are no disabled people in the relief camps.
 There are number of people in trauma. But the statistics are not available with
either the Health Ministry or the Welfare Ministry. We were told that volunteers
are going from camp to camp giving counselling but there are no comprehensive
efforts yet.
Overall Disability Scenario in the Andaman & Nicobar Islands
 According to Census 2001, the total number of disabled people in the Andaman &
Nicobar Islands is 7057, which is an underestimate. If we take 5 %, which is an
acceptable estimate, the total number of disabled people in this region works out
to approximately 20,000.
 No rehabilitation services are available for the disabled people in this entire
region.
 Not a single disability NGO is receiving any grant from the Government or from
any other donor agency.
 The Director Social Welfare, who is also officiating as the Disability
Commissioner (dual charge) sits on the first floor. There are no lifts/ ramps in this
building, which is a new construction!
 The Secretary Social Welfare's office is also on the first floor.
 No trace of implementation of the National Trust Act.
 There is no channelising agency for the National Handicapped Finance and
Development Corporation (NHFDC).
 They have an Integrated Education (IED) Scheme, under which 942 disabled
children have been identified and enrolled. However, the quality of the services,
according to the beneficiaries is very poor. IED teachers do not know Braille or
sign language. There are only 24 IED cells in the entire region. They are not
accessible to many disabled children living in far flung areas. Many parents (those
who can afford) prefer to go to the mainland (Chennai & Kolkata) for
rehabilitation, spending huge amount of money from their own pockets.
 Sarva Siksha Abhiyan ('Education for All' Campaign) for disabled people is yet to
be implemented in the region.
 There are no posts reserved for disabled people in Group A & B services in the
Departments, which includes the Social Welfare Department.
Visit to Relief Camps:
We could visit only two relief camps in Port Blair. Contradictory to the information given
by government officials, we found several disabled people in the relief camps. We
identified 43 disabled people in just these two camps.
Food, clothing, etc. are not a problem. They are being provided by the Government &
NGOs. Some camps were more chaotic than others. It is still a very temporary
arrangement. People are living under one huge tent and families do not have separate
shelters.
As the schools are being reopened on 24 th January, there are plans to shift the camps
located in schools. There are discussions for building temporary and permanent shelters.
Meeting with the Hon'ble Lt. Governor
The one to one meeting that we had with the Hon'ble Lt. Governor, Shri Ram Kapsay
was positive. He admitted that disability is a neglected area in the region. He offered his
immediate support and also invited us to start services for disabled people in the
Andaman & Nicobar Islands.
NGOs Meeting organised by the Planning Commission:
Ms. Syeda Hameed, Member, Planning Commission, Government of India, had convened
a meeting of NGOs on 20 th January at the Secretariat, to understand the present situation
vis-à-vis the relief & rehabilitation work. About 50 NGOs (International, National &
Local) attended the meeting. Not a single disability organisation was present, other than
us.
Till now, the focus has been on immediate relief, which seems to be more or less under
control. However, NGOs complained about lack of coordination amongst themselves and
with the Government, resulting in duplication of work.
NGOs are keen to begin the rehabilitation work, but have not got a clear go-ahead from
the Government.
Some valuable suggestions that came up at the meeting were -- allocation of work to
NGOs; setting up of a Coordination Committee, which can meet periodically to plan &
monitor the rehabilitation work, etc. We also shared our findings and suggestions with
regard to inclusion of disability in the relief & rehabilitation work, which was taken
positively.
Recommendations:
1. There is an immediate need to collect data of disabled people, who have been
affected by Tsunami - those who have been rendered disabled; those with disability
who have survived but are affected and people with psychosocial problems, as a result
of the disaster.
2. Disability Representatives should be a part of the Coordination Committee that
the Planning Commission is going to set up for planning, coordinating & monitoring
the relief & rehabilitation work.
3. Concrete and time-bound plans to address disability concerns in revival of
livelihoods , achieving convergence among all on-going programmes of sustainable
development and reconstruction.
4. Disabled friendly and Inclusive built environment, when reconstruction of shelters
(temporary or permanent), schools, health centres, housing facilities, water and
sanitation facilities, etc. takes place.
5. International & other NGOs supporting the Government in relief / rehabilitation /
reconstruction work should include disability on their agenda.
6. Disability should be a priority area for any policy that is being formulated for
preparedness, mitigation & management and other efforts to prepare ourselves to
face similar challenges with confidence & competence in the future.
7. It is a good opportunity to correct the past mistakes. The Disability Act, the
National Trust Act should be enforced in the Andaman & Nicobar Islands. As the first
step, a full-time Disability Commissioner should be appointed for the Union
Territory immediately, which can really speed up the process.
Note: Recommendations from 1 to 6 are common & applicable to all Tsunami
affected areas.
Ms. Rama Chari is a Senior Programme Officer, in the National Centre for Promotion of
Employment for Disabled People (NCPEDP), New Delhi and Ms. Rajul Padmanabhan is
the Deputy Director of Vidya Sagar, Chennai. They are members of the Core Group,
which has been constituted by NCPEDP in association with Disabled People's
International - India, as part of the campaign to get disability included in the relief &
rehabilitation of Tsunami victims.
Terror Wave: Tsunami and Disability
By Charlotte McClain-Nhlapo (cmcclainnhlapo@worldbank.org)
The 26th of December 2004, was the beginning of a new wave of shock and terror that
faced the world. Weeks after the tsunami, the emerging picture is unprecedented. The
magnitude and scale of the devastation is staggering. The death toll to date is unparalleled
and still many more people are at risk, unaccounted for, displaced, shattered and shocked.
The World Health Organisation (WHO) estimates that 150,000 people are now at
extreme risk of disease and that more than a half million people are seriously injured.
Many of those injured will become permanently disabled in one of the largest mass
casualty events in recent times. Early reports from disaster assistance experts indicate
massive numbers of lower-extremity injuries and amputations. Because people with
disabilities are among the most neglected populations worldwide, what were likely scarce
resources in the first place may now be overwhelmed with the dramatically increased
need. In order to identify and meet the coming demand for health, rehabilitation,
accessible housing, and the many other needs of people with disabilities in communities
throughout South Asia, a thorough assessment of the situation is essential.
Particular vulnerability of people with disabilities
It is also critical that we examine what impact the emergency relief and post-tsunami
reconstruction will have on the vulnerability of those at risk with a particular focus on
people with disabilities. Research shows us that in most disasters there are groups in
society who experience discrimination in relation to relief aid distribution, are vulnerable
to abuse, predators and heinous violations of their human rights. Their vulnerability can
be based on factors such as disability, gender, geographical location, ethnicity, age or
caste.
There are a number of important areas to pay attention to in responding to the disaster
1. The coping mechanisms for people with disabilities in the crisis situation- at an
individual level
2. The actions of the governments, NGO's, donor agencies and other relief agencies.
[are they accessing people with disabilities?]
3. The reconstruction process that will be spearheaded by governments with the
assistance from the international community [is it accessible?]
4. The increase in numbers of people with disabilities as a result of the Tsunami
Suggested interventions from a disability perspective
The Tsunami in the region was a natural phenomenon. However, the impact and the
result of those who intervene is not. The interventions may be determined by the
circumstances such as poverty, spatial location, social inequalities, gender, age, and
disability. There is always a risk that in relief initiatives, further marginalization of the
most vulnerable occurs. It is therefore, important to recognize and more importantly act
on the vulnerability of people with disabilities in this situation of shock and disaster.
Using a disability perspective, the following need to be considered:
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the socio-economic vulnerability of people with disabilities.
the organizational capacity of Disabled People's Organizations (DPOs) as support
networks and in many cases as primary sources of information. They will need to
be strengthened.
the need for specific contingency plans for people with disabilities to be
developed for emergency relief..
the lack of secure employment;
inadequate and lack of access to healthcare services
inadequate nutrition and threats of food insecurity
the loss of housing.
loss of primary care givers
the general lack of access to public and/or private transport.
New opportunity to address inequality and inclusiveness
However, notwithstanding the devastation, this disaster can provide a real opportunity for
addressing inequality and ensuring more inclusiveness in the process of reconstruction by
thoughtful planning that is premised on transforming society and removing barriers. It
will however require that the reconstruction be people-centered and participatory if we
are serious about achieving equity and social justice. We cannot and should not be part of
reconstructing inequality and poverty. Fostering contingency planning and emergency
preparedness at the local level is just as important, if not more so, than the planning
undertaken by humanitarians. Contingency planning at the community level increases
local resilience before, during and after a disaster. We must remember that the people
most directly affected by a development issue have the best ideas, analysis and opinions
about how to address that issue. Our efforts should be to facilitate this.
(Editor's note: the author, an occasional writer for DisabilityWorld since its inception, is a
Commissioner of the South Africa Human Rights Commission, detailed this year to the
World Bank's Asia office.)
News Sources on Tsunami & People with Disabilities:
The World Bank's Global Partnership on Disability & Development is operating a
listserv on the topic and many NGOs have written in detailing their actvivities. Send
email to gpdd@lists.worldbank.org
www.apcdproject.org/tsunami
UNESCAP's Asia Pacific Center on Disability, headquartered in Bangkok, has started a
webpage of projects and news about disabled people affected by tsunami
www.abilityinfo.com/ticker/tsunamidisability.html
Tracking mainstream news articles concerned with impact of tsunami on disabled persons
in the region
Reports from RI on the 5th UN Ad Hoc Meetings on
Disability Convention
Part one of the report to RI on the UN Fifth Ad Hoc Committee Session, 24th
January to 4th February 2005
By Tomas Lagerwall, RI Secretary General
The 5th Ad Hoc meeting on a convention on the rights of people with disabilities was
concluded February 4, 2005.
The International Disability Caucus (IDC), composed of more than 50 international
NGOs, played a very important role in discussions with governments and managed to
have its voice heard on several important issues. Handicap International served as a
secretariat for the IDC and Simonetta Capobianco, as an RI intern, supported the work
between NGOs, the United Nations secretariat and governments.
RI's Vice President for the Africa Region Gidion Mandesi of Tanzania wrote a report
summarizing the first and second week of the meeting. Please find attached the report
from the second week of the meeting (the report from the first week of the meeting was
emailed to members on February 3). In addition, both reports will be posted on RI's
website at http://www.riglobal.org/un/index.html.
RI held an open lunch meeting for RI members and people in RI's network attending the
Ad Hoc meeting on February 2 and had about 55 participants. In addition to the Ad Hoc
meeting, RI strategy for 2004 - 2008 was presented and discussed. A similar meeting will
be held on August 10, during the 6 th Ad Hoc meeting, which is scheduled for August 112, 2005. In addition, during the next Ad Hoc meeting, articles where RI has a high
interest such as the Right to Education, Accessibility, Health Care, Habilitation and
Rehabilitation and Work will most likely be discussed.
Similarly to previous Ad Hoc meetings, organizations have approached RI requesting
information on how to become of RI.
The chair of the Ad Hoc meeting until now - Ambassador Luis Gallegos of Ecuador
made public at the end of the last day that he would be resigning as chair as he is moving
to Australia to become the ambassador of Ecuador to Australia. As there have been some
rumors within the disability community around the reason for his moving, I would
underline that diplomats are subject to move around the world. It is however no secret
that Ambassador Gallegos would have liked to remain the chair of bureau and possibly
also stay in New York.
Discussions have started among governments and NGOs about the composition of the
new bureau and particularly who will become the new chair. Many people have spoken in
favor of Ambassador Don MacKay of New Zealand, who has been very clever in leading
some of the negotiations at the 5 th Ad Hoc meeting. The group Western European
Countries and Others (WEOG), which is currently being represented by Sweden and
includes the 25 EU countries plus Norway, Iceland, Australia, Canada, Japan, New
Zealand and USA, supports Ambassador MacKay. Several people in Latin America
would like the chair to continue to be from the Latin American region - GRULAC, in UN
language. Negotiations will continue until the next ad Hoc meeting.
Several other meetings were held in connection with the two-week Ad Hoc meeting:
• IDA - the International Disability Alliance - held a meeting on January 29 in New
York. Michael Fox, Gidion Mandesi and Tomas Lagerwall attended the meeting from
RI. At the meeting it was decided that Tina Minkowitz from the World Network of
Users and Survivors of Psychiatry (WNUSP) will be the chair of IDA from June 2005
to May 2006 and Gidion Mandesi from RI will be the chair from June 2006 to May
2007. In addition, IDA had a meeting with Under-Secretary-General Ocampo about
the convention and access issues related to the UN headquarters in New York.
• The Flagship on the Right to Education Towards Inclusion held an informal meeting
on February 5. The meeting underlined the need for the Flagship, UN agencies and
governments to ensure that children with disabilities all over the world including in
developing countries get the same opportunities as other children to go to school,
which is not the case today.
• UN agencies with an interest in the disability field held a meeting on February 7 with
the aim to inform each other of ongoing activities and upcoming meetings. Tina
Minkowitz from WNUSP and Tomas Lagerwall from RI attended the meeting
representing IDA.
Finally I would like to mention that RI managed to provide daily summaries from the Ad
Hoc meeting with support from the Henry H. Kessler Foundation, the New Zealand
government and the United Nations. The summaries are a detailed compilation of the
negotiations. The summaries will be posted on RI's website www.riglobal.org under UN
Convention.
Part two of the report to RI on the UN Fifth Ad Hoc Committee Session, 24th
January to 4th February 2005
By Gidion K. Mandesi
As you can remember in the first part of the report to RI about progress of drafting
process and negotiations of the UN Comprehensive and Integral Convention on the
protection and promotion of the Rights and Dignity of Persons with Disabilities, I
reported article 7 sub articles 5 to article 9 of it. In this second part, article 10 to 15 is
covered.
With regard to article 10 about liberty and security of the person, many government
delegations have been agreed upon that there shall not be deprivation of liberty of a
person with disability on the ground of his or her disability. In other words in no case
shall the existence of a disability justify a deprivation of liberty. Emphasis added.
Basically, paragraph 1 of article 10 has been accepted with the following wording:
1. States parties shall ensure that persons with disabilities
a. Enjoy the right to liberty and security of the person, without discrimination based on
disability on an equal basis with others
b. Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of
liberty shall be in conformity with the law, and in no case shall be based
solely/exclusively on disability the existence of a disability justify a deprivation of
liberty
It was further accepted, inter alia, that elements of dignity and worth, adequate accessible
information, legal rights, fair hearing include the right to be heard, seek review on an
equal basis with others, as well as compensation to be provided for individual in the case
of deprivation of his/her liberty should be enshrined in paragraph 2 of article 10. After
long discussion, the majority of government delegations have accepted the following
wording to paragraph 2 of article 10.
2. States Parties shall ensure that if persons with disabilities are deprived of their liberty,
they have at least the following guarantees:
a. To be treated with humanity and respect for the inherent dignity and worth of the
human person, and in a manner that respects their human rights, conforms with the
objectives and principles of this Convention, and reasonably accommodates their
disability.
b. To be provided (promptly) with adequate accessible information as to their legal
rights and the reasons for the deprivation of their liberty;
c. To be provided with prompt access to legal and other appropriate assistance to;
i. Challenge the lawfulness of the deprivation of their liberty and a fair hearing,
including the right to be heard) before a court or other competent, independent and
impartial authority in which case, they shall be provided with a prompt decision on
any such action;
ii. Seek review on an equal basis with others of the deprivation of their liberty, including
periodic review as appropriate;
d. To be provided with compensation in the case of deprivation of liberty contrary to
this convention
3. Any person with disability who has been the victim of unlawful deprivation on liberty
shall have an enforceable right to compensation.
All in all, it is clearly settled that deprivation of one's liberty on the basis of disability is
strictly prohibited.
With due regard to article 11 on freedom from torture or cruel, inhuman or degrading
treatment or punishment; many government delegations have agreed upon that no person
with disabilities shall be subjected to torture or to cruel, inhuman or degrading treatment
or punishment. It was further accepted that forced intervention and forced
institutionalization must be forbidden. In addition, it was agreed that state parties shall
take all effective legislative, administrative, judicial, educational or other measures to
prevent persons with disabilities from being subjected to torture or cruel, inhuman or
degrading treatment or punishment.
Issues of free and informed consent, medical scientific or other form of experimentation
be included in a separate article from article 11.
Article 12 addresses freedom from violence and abuse. The majority of government
delegations have fully discussed the importance of this article for legal protection of
persons with disabilities against violence and abuse. Principally, it has been accepted that
state parties recognize that persons with disabilities are at greater risk, both within and
outside the home, of violence, injury or abuse, neglect or negligent treatment,
maltreatment or exploitation, including sexual exploitation and abuse. States Parties shall,
therefore, take all appropriate legislative, administrative, social, educational and other
measures to protect persons with disabilities, both within and outside the home, from all
forms of violence, injury or abuse, neglect or negligent treatment, maltreatment or
exploitation, including sexual exploitation and abuse. Many government delegations and
the International Disability Caucus have strongly rejected the use of forced interventions
or forced institutionalization aimed at correcting, improving, or alleviating any actual or
perceived impairment. Thus, it is accepted the principle that forced institutionalization of
persons with disabilities on the basis of disability is illegal.
Furthermore, it was emphasized that state Parties shall ensure in any case of involuntary
treatment of persons with disabilities that:
a. It is undertaken in accordance with the procedures established by law and with the
application of appropriate legal safeguards.
b. The law shall provide that the interventions are in the least restrictive settings
possible and the best interests of the person concerned will be fully taken into
account.
c. Forced interventions are appropriate for the person and provided without financial
cost to the individual receiving the treatment or to his or her family emphasis on this
aspect was given by New Zealand.
Concerning article 13 on freedom of expression and opinion and access to information,
both public information and information made or produced by private entities were
accepted to be incorporated in that article to ensure broader range of accessing
information by persons with disability. Sign language and Braille have been accepted as
key aspects to ensure effective communication for people with hearing and visual
impairments. The majority of state delegation have been agreed upon that state parties
shall take all appropriate measures to ensure that persons with disabilities can exercise
their right to freedom of expression and opinion including the freedom to seek, received
and impart information and ideas on an equal basis with others and through sign
language, and Braille and augmentative alternative communication and all other
accessible means, modes and formats of communication of their choice, including:
• Providing official public information to persons with disabilities, in a timely manner
and without additional coast and in accessible formats and technologies appropriate to
different kinds of disabilities.
• Urging private entities that provide services to the general public to provide
information and services in accessible and usable formats for persons with disabilities.
The role of mass media in disseminating information to persons with disabilities has been
discussed and the majority of government delegations have accepted the inclusion of
mass media in article 13.
In addition, Disability International Caucus has insisted freedom of expression and
opinion should be incorporated in that article. No objection indicated from the
government delegations.
Article 14 address respect for privacy, the home and the family. Many country
delegations have been accepted to separate this article into two separate articles. One
should cover respect for privacy and another respect for home, the family and intimate
relations. Issues relating to sexuality and sexual orientation were not favoured by Arabic,
Latin and African countries. Hence, there was no consensus to include these issues into
article 14. Further forced sterilization was raised during the discussion and many
government delegations have accepted the retaining of fertility of persons with
disabilities. Hence, forced sterilization is strictly prohibited. In addition, the best interest
of the child has been received much support by many delegations in this article.
International Disability Caucus contributions to this article 14 were greatly valued. They
emphasized that caregivers should not be allowed to control personal assistance of
persons with disability. Furthermore IDC also proposed language on adult person with
disability who live with family members. Also it highlighted the issue of preferential
treatment of non-disabled parents in custody disputes following divorce.
Regarding Article 15 on living independently and being included in the Community.
This article was briefly discussed in the last day of the Fifth Ad Hoc Committee session.
It was emphasized that persons with disabilities have equal choices to others in the
community. It was indicated by some government delegation that lack of economic
resources would limit the ability to fulfill some of the commitments for certain countries.
In addition International Disability Caucus and other NGOs spoke of the need to
safeguard choices for person with disability particularly in relation to living in
communities. Emphasis added.
Closing Speech of the Chairman of the Ad Hoc Committee, Ambassador Luis
Galegos (Ecuador)
On 4 th February 2005, the last day of the Fifth Ad Hoc Committee on Comprehensive
and Integral International Convention on the Protection and Promotion of the Rights and
Dignity of Persons with Disabilities, the Chairman of the Ad Hoc Committee in his
speech gave sincere thanks to all stakeholders for their participation in that important
historical work regarding drafting process and negotiations of the UN Convention on
disability rights. He further informed that his country Ecuador has appointed him to be
Ambassador in Sydney Australia with new duties and responsibilities. He therefore
indicated that he his willing to continue to be a chairman of the Ad Hoc Committee but
he will be away from New York and his time will be limited. Considering this factor, he
has decided to resign. Due to his designation, at the Sixth Ad Hoc Meeting scheduled in 1
st to 12 th August 2005, there will be elections of the new officers to save in the Bureau
of the Ad Hoc Committee. Both government delegations and International Disability
Caucus appreciated the good work have so far been done by Ambassador Luis Galegos
has the Chair of the Ad Hoc Committee. They wished him good luck and greater success
in his new tasks as Ambassador of Ecuador in Australia.
Finally Ms. Venus Iligan, DPI President read a statement on behalf of International
Disability Caucus indicating appreciations and challenges during the Fifth Ad Hoc
Committee Session. She further asked government delegations to work hard in this
drafting process in order to finalize the draft context without any delay. She informed the
Ad Hoc Committee Session that majority of persons with disabilities who are living in
both developing and developed countries need to see quality UN Convention having
addressed equal rights. They eagerly want the UN Convention on disability rights being
put in place in order to solve the problems they face in their life, as well as promoting and
protecting their basic human rights and freedoms. In summing up her speech on behalf of
International Disability Caucus, she strongly asked all UN Member states to contribute
funds to United Nations Voluntary Fund on Disability in order to enable participation of
persons with disabilities from the South (Developing countries) to participate effectively
in this important drafting process. She emphasizing the slogan "nothing about us without
us" in her last sentence.
Jordan: Prince Raad bin Zaid in Support of the UN
Convention
Speech presented to RI/International Paralympic Committee Symposium, Greece
Your Excellency, Representative of the Greek Government,
President Phil Craven,
President Michael Fox,
Distinguished Delegates and Friends,
Ladies and Gentlemen,
May I first of all begin by conveying to His Excellency, the Representative of the Greek
Government to both Presidents Phil Craven and Michael Fox and to all those present here
today His Majesty King Abdulla's II' heartfelt greetings, and best wishes for the success
for this momentous international gathering.
It is indeed an honor to be here with you, in Athens, the ancient birthplace of the Olympic
Games, in celebrating of the very good and noble in mankind. We rejoin here today, two
and a half thousand years after the birth of the Olympics inspired by its refined values of
diversity and participation. Certainly, our gathering here in Greece resonates ancient
principles that accepts our differences and celebrates our common values.
And while the whole world has just commemorated the triumphant reunion of the
Olympics in Athens, we also the supporters and the promoters of the rights of persons
with disabilities are rejoicing with gusto Athens acceptance and embrace of the
Paralympic Movement for the first time in fifty years since its birth; a union that
reinforces the core values of dignity and equality for all human beings, where all human
abilities are united by humanity's strive for excellence. With more than 4,500 athletes
participating here with us, it is truly a momentous occasion to speak to you from here.
Dear Excellencies,
Distinguished Colleagues,
Ladies and Gentlemen,
After a long history of total neglect, disability as a human rights issue has finally gained
momentum in international recognition. After continually being denied their basic human
rights, people with disabilities have experienced such severe and tortuous lifelong
discrimination, which hopefully would be eradicated in the days to come the world over.
More than 500 million people with disabilities around the globe live in the developing
world, and are denied access to the resources necessary to meet their basic needs; their
vulnerability is even greater during times of conflict or disaster when they are often
ignored and are ill-treated.
The elimination of all forms of discrimination lies at the heart of the UN mandate and is
reflected in all international instruments. Moreover, human equality is central to the
system of basic freedoms postulated by human rights law. Its core premise is that all
persons not only possess inestimable inherent self- worth but also are inherently equal in
terms of self- worth, regardless of their difference. Thus differences based on arbitrary
factors from a moral point of view over which a person has no control, are considered
invalid. This is not to say that there are no differences between the people; but in the
realm of disability rights our struggle was to call for a genuinely egalitarian society, one
that has a positive and just approach human differences. The disability rights debate is
not about the enjoyment of specific rights, but about ensuring the effective enjoyment
of all human rights .
While the UN Standard Rules on the Equalization of Opportunities for Persons with
Disabilities adopted in 1993, are not considered legally binding; they do however, contain
internationally accepted guidelines on disability, which are intended to enforce policymaking and comprehensive program implementation at both national and international
levels.
The call for an International Convention on the Rights of Persons with Disabilities has
been at the heart of our efforts to support and promote the rights of persons with
disabilities for a number of years. I still recall the meeting that was chaired by Dr. Arthur
O'Reilly former RI President, in July 1999, at the Royal Palace in Jordan, where it was
suggested then that it was time to try again to get the United Nations to adopt a
Convention on the Rights of Persons with Disabilities, and to which there was unanimous
agreement that RI should, in its Charter for the Third Millennium call on nations to
support this proposal.
But though there were numerous calls supporting this Convention, it was not until
December 2001 that the General Assembly adopted resolution 56/168 establishing an Ad
Hoc Committee for a Comprehensive and Integral International Convention to Promote
and Protect the Rights and Dignity of Persons with Disabilities, based on a holistic
approach in the work done in the fields of social development, human rights and nondiscrimination and taking into account the recommendations of the Commission on
Human Rights and the Commission for Social Development. A year and a half later, the
Ad Hoc Committee decided to establish a Drafting Working Group that included, for the
first time, 12 NGO representatives and one representative from National Human Rights
Institutions; in addition to 27 government representatives.
The Hashemite Kingdom of Jordan has been among the forefront countries throughout
the process and has fully supported the substantiation of the Convention. In addition,
Jordan was nominated to represent NGOs in West Asia through the nomination of
Jordanian Director of the Landmine Survivors Network. Ever since, Jordan has actively
participated in every Ad Hoc Committee meeting and we have included people with
disabilities on our delegations as experts. I cannot emphasize enough our firm belief in
the active participation of people with disabilities and their representative organization in
the drafting of this Convention, and in its monitoring and implementation. There is no
excuse for leaving people with disabilities outside the room as their treaty is being
negotiated.
Dear Excellencies,
Distinguished Colleagues,
Ladies and Gentlemen,
Allow me to briefly touch upon the main issues in drafting this Convention. The
evolution of international human rights law requires us to build on, and not undercut what
we have achieved. The structure of this Convention should cover all traditionally defined
areas of rights, whether civil, political, economic, social and cultural rights underscoring
indivisibility, mutual reinforcement and equal importance of these rights. The importance
of equalization of opportunities requires that we go beyond the mere non-discrimination
model to specific elaboration of measures to address barriers to enjoyment of rights by
persons with disabilities.
As Lord Morris of Manchester remarked so poignantly and I quote: "Issues related to
persons with disability should not always be viewed in the context of cost - effectiveness,
but rather emphasis should be made on value as well as costs. Let us all join hands and
see to it that all persons with a disability are seen as giving as well as receiving, where
their potential is understood and valued where needs come before means, where if years
cannot be added to their lives at least life can be added to their years."
It must be emphasized that we are not calling for "special" rights, we are calling for
securing the rights already enjoyed by non-disabled people; no more "CHARITY" to
receive but "RIGHTS" to claim.
We believe that the implementation and monitoring of international instruments starts at
home. The enforcement of human rights law changes obligations from words to action. In
view of the many challenges that currently face treaty bodies, we see the substantiation of
this Convention as an opportunity to establish a more effective monitoring mechanism.
While we cannot accept any monitoring mechanism below existing standards, we agree
with the notion of focusing on both the international and national levels; also we hear
with interest, creative ideas of complementing both these levels of monitoring with that
of a regional level, moving the dialogue on implementation closer to home. Participation
of persons with disabilities and their representative organizations in monitoring at all
levels is considered by us as indispensable and has to be fully supported.
And I cannot conclude my statement without reference to Article 24 of the Draft treaty
text, which is dedicated to the persons with disability's participation in cultural life,
recreation, leisure and sport. This article was not discussed at the last Ad Hoc Committee
meeting, but I note comments made in the Legal Analysis of the 3 rd Report prepared by
Landmine Survivors Network that support proposals of separating participation in Sports
and recreation from that of cultural life. The standard Rules 10 and 11 address Culture
and Sports separately. In fact, sports and recreation have independent mechanisms of
implementation at the national, regional and international levels; moreover, sports has
proven to be an invaluable vehicle for early rehabilitation for people with disabilities and
plays an important role in their integration. It needs to gain more focus and attention
around the globe.
As supporters and promoters of the rights of persons with disabilities and integration, I
take this opportunity to congratulate the IPC on signing the IOC- IPC Cooperation
Agreement. The fact that Olympic and Paralympic summer games have one organizing
Committee this year is indeed an important step; it is the dream of many supporters and
promoters of the rights of persons with disabilities to see athletes with and without
disabilities walk alongside each other, saluting billions of spectators in an integrated
opening ceremony.
In conclusion, I take this opportunity to thank our hosts for organizing these games with
renowned Greek hospitability; and special thanks to the International Paralympic
Committee and RI for organizing this most stupendous gathering.
Friends,
Let us engage in the noble field of competitive sports striving for excellence, driven by
sheer will, strength and ability. Let our athletes inspire us by their unique spirit to
overcome all barriers; and let them teach us the true way towards acceptance and peace
and may peace be the ultimate winner.
Let us fear less, hope more; talk less and do more.
Japanese Government & NGO Partnership on UN
Convention
By Kim Jeong-Ok, Deputy Secretary-General, Japan National Assembly of Disabled
Peoples' International
From 23 August to 3 September 2004, the 4th session of the Ad Hoc Committee on a
Comprehensive and Integral International Convention on Protection and Promotion of the
Rights and Dignity of Persons with Disabilities was held at the United Nations
Headquarters in New York. From Japan, in addition to the delegates from the cabinet
office, Ministry of Justice, Ministry of Foreign Affairs and Ministry of Education,
Culture, Sports, Science and Technology, headed by Mr. Shigeki Sumi, Deputy DirectorGeneral, Multilateral Cooperation Department of Ministry of Foreign Affairs, a total of
25 people representing JDF (Japan Disability Forum Preparation Committee), including
their interpreters, participated in the meeting. Moreover, five members of the Diet
(Parliament) joined for the first time and two side-events (seminars) were held during the
session, cosponsored by the Permanent Mission of Japan to the United Nations and JDF.
The first one was on "Reasonable Accommodation with Emphasis on Employment and
Education" and the latter one was on "Possible Impacts of the Convention in Different
Countries and Regions". There were many participants in both seminars and these
energetic efforts by Japan drew attention from the delegates from various countries and
were highly appreciated. Such results came from the collaborative efforts of the Japanese
Government and JDF.
The Japanese Delegation has been continually holding conferences between the
government and JDF since before the 2nd session of the Ad Hoc Committee was held in
June 2003. As a result, Mr.Toshihiro Higashi (Permanent Representative of Japan
National Assembly of Disabled Peoples' International, a lawyer), recommended by JDF,
and myself (Deputy Secretary-General, Japan National Assembly of Disabled Peoples'
International), appointed as an advisor/observer, joined the Delegation and have been
participating in the discussion of the Ad Hoc Committee, while exchanging views with
other Japanese delegates on a regular basis.
On the occasion of the 4th session of the Ad Hoc Committee, we exchanged views with
the Japanese Delegation about certain issues such as theÅ@relationship between people
with disabilities and their families (related to the Preamble) and definition of sign
language as a form of language (as stated in Article 3 "Definition")
On the last day of the 4th session of the Ad Hoc Committee, a summarizing meeting was
held by Sumi, Head of Delegation, and JDF representatives. I would like to introduce the
common impressions expressed and the summary of the opinions proposed in the
meeting.
• The main issue seems to be to clarify to a certain degree which rights are political and
civil rights and which are the economic, social and cultural rights. From the traditional
point of view, the political and civil rights must be realized immediately. Regarding
the access to information, if it is accepted as a right, it will be required to prepare sign
language interpretation or Braille transcription when holding a political meeting
during election campaigns, which is not possible at this point. In addition, the
problems of taking positive measures including reasonable accommodation and of the
relationship between people with disabilities and their families should be further
discussed.
• As for the side-events (seminars), by providing two seminars, the Japanese
Government could demonstrate its very positive attitude towards establishing the
convention. The contents of the seminars were also very interesting.
• This time, the members of the Diet also participated both in the first half and the latter
half of the session, which is quite beneficial in terms of promoting the convention in
the country.
• It is recommended to the Government to hold a study meeting with JDF, in which
case, not only Ministry of Foreign Affairs but also other government offices
concerned should be involved. A study meeting on reasonable accommodation was
once held within the government. Having such meetings a few times before the next
Ad Hoc Committee was suggested.
• Quite a few children with disabilities are attending regular school as long as their
parents desire them to do so. Exchanging views on such matters was suggested.
• It seems that the discussion on this convention gives various opportunities to solve
problems related to people with disabilities.
Through the above meeting I really feel the partnership between the Japanese
Government and JDF is Important and would like to continue to exchanges views further
about the Convention.
Fourth Session of the Ad Hoc Committee URL:
http://www.un.org/esa/socdev/enable/rights/ahc4.htm
Genetic Technology and the UN Disability Convention
By Majid Turmusani
Introduction
Recent years have witnessed extensive development of genetic technology notably in the
field of modified plantations and food and lately regarding the technology of cloning. It
can be argued that tampering with humans through food and genes is a violation of basic
human rights for decent living and a safe existence which is clearly stated in Article (3)
of the Universal Declaration of Human Rights (UN, 1948) and more specifically in
UNESCO's Universal Declaration on the Human Genome and Human Rights (UNESCO,
1997; Degener, 1998). More recently, the current draft disability convention has touched
on this issue in its 4 th session of the Ad Hoc Committee on the Comprehensive and
Integral International Convention on the Protection and Promotion of the Rights and
Dignity of Persons with Disabilities (UN, 2004) as will be discussed shortly.
This short paper argues that medical debate on genetic technology such as food
modification and cloning, has contributed to the emergence of the notion of the 'perfect
body', which in some way works against minority groups such as people with
impairments. Such debates have political implications on society's policies and practices
towards people with disabilities. For example, it is believed that the medical debate on
euthanasia and eugenics have led to public acceptance and support of policies and
practices that eliminate defective bodies or minds. Therefore, it is important to take
cautious measures when utilising the outcome of genetic research in the social policy
making process. The on going process of developing universal code of ethical practices in
social and technological research impacting disabled people is important but equally
important is the debating processes and their production (Hurst, 2000; DAA, 2000;
2001).
Genetic technology1 and disabled people
Genetic research has made many positive contributions to human life such as overcoming
deadly diseases and maximising food production. This same technology however, has
sometimes abused 'subjects' - whether human or animals - and is often involved in
unethical practices. For example, researching vulnerable groups such as disabled people
without consent (Diesfeld, 1999; Griffo, 2003). Historically, the implications of genetic
research contributed to a widespread rejection of anything less than complete and perfect
and therefore, those with impairments were consequently considered as lesser human
beings. Thus, contributing to the creation of the notion of disability as deviance and
disabled people as a different species whose lives are not worth living. This is then used
widely to justify 'euthanasia' and the elimination of defective bodies (Wendell, 1996;
Fitzgerald, 1999; Wilson, 2001; Barile, 2003; Albert, 2004).
Disability from the social perspective is a socially created notion and it is culturally
produced by the disabling society. This however does not deny the physical and
functional limitations of living with impairments. Therefore the solution according to
many social policy theorists is sought in restructuring the society, especially the economy
(Barton, 1996; Oliver and Barnes, 1998). Genetics technology and genetic research is not
the solution to disabled people's problems. In the contrary, they are contributing factors
for creating disability when seeking perfection to bodies and minds. Disabled people's
movement had long rejected genetic research, and called for cautions when using such
research (Shakespeare, 1995; Inclusion International, 1996; Albert, 2004). They
contended that genetic research had negative impact on disabled people and that such
research had been disempowering to disabled people. In brief, they argue that society
should look beyond the individual and their biology (i.e. genes) into the wider social,
political and environmental factors in line with the social perspective on disability.
Pfeiffer for example, links genetics debate concerning disabled people with the Social
Darwinism theory which promoted 'survival for the fittest'. This motto has been used as a
point of reference in genetic engineering which aimed at improving the human genome to
produce a 'better' and 'fitter' species (Pfeiffer, 1994; Suzuki, 2001). Social Darwinism
argues that social policy should allow the weak and unfit to fail and die and this is
justified as morally right ( BCODP, 2002-3 . Ideas emerged from Social Darwinism such
as abortions, euthanasia and including only the fittest people in public life, have led to
segregating those with impairment from mainstream society and often subjecting them to
discrimination and abuse (DAA, 1997; Wertz, 1999).
Social Darwinism argues the need for keeping fit and healthy bodies by means of
improving food stocks. The increased population of the world gives justification for
improved food production especially in developing countries. For this reason, food
modification (Genetically Modified Food 2 - GMF) has been an issue in genetic
technology research during recent years. Yet, the focus continues to produce the best
food to maintain fittest bodies and mind.
What went wrong in doing genetics research?
Research has an impact on the lives of those who are researched and has potential to act
as a political tool in bringing social change in society. The impact of research can be
twofold for this discussion. For example, some traditional research such as survey
methods perpetuated the passivity of research subjects and served as an additional tool in
their oppression. On the other hand, participatory and emanicipatory research played an
essential role in empowering research partners and helped in bringing them into the
decision making processes.
The problem arises when certain research method becomes a further means of exacting
control over certain group such as disabled people and subjecting them to abuse and
inequality such is the case with medical research (Bury, 1996). Previous research
including genetic research often failed to take note of the wider relevance of research to
all groups in the community as well as how research can include people and benefit them
rather than exclude them. Genetic research, instead pointed the finger to the need for
eliminating defective members when attempting to reach perfect and full production
process in society. Disabled people were subsequently excluded from mainstream society
on the ground of their biological genetic limitations.
The main disadvantage of genetic research is related to what is called genetic
determinism - which means that human appearance and behaviour is entirely dependent
on genetics and has little to do with social and economic factors. Society therefore, may
decide to withdraw resources from people with genetic disorders because it sees these
conditions as preventable (DAA, 1997). Equally, genetic research plays a role in
conceptualising differences between people who have genetic disorders and those who
don't leading to negative attitudes and discrimination against them (Health Canada, 20045).
Discrimination associated with such genetic technology research may be seen in areas of
employment, health care and insurance, especially in the developed world. The media are
full of reported incidents where employers and insurance companies denied their services
to disabled people on the ground of their genetics testing results (DAA, 1997; BBC,
2001). UNESCO's Universal Declaration on the Human Genome and Human Rights has
recognised this important issue in Article 8 and clearly states that no one should be
subject to discrimination on the basis of genetic characteristics (UNESCO, 1997).
Similar to other technologies, genetic research will find its way to the developing world
sooner or later within our global village. Right now, this technology is not too remote for
disabled people in the developing world whose main concern is surviving. Disabled
people in these countries will be affected by such technology in one way or another.
Therefore, they have the right to be informed about genetic developments and the right to
contribute to debates and policies concerning this issue. The failure of western bioethics
to attend to cross cultural issues leaves people with impairments in developing countries
unprotected and furthers their vulnerability3.
Developing human rights perspective4: the right to life and participation
As argued earlier, vulnerable groups such as people with impairments are under
increasing abuse by modern technologies including genetic medical technology. This is
perhaps due to a widespread dominance of medical 5 approach to disability and
development. In countries lacking legislation to protect the rights of minority groups or
countries with poor human rights records, disabled people are often at further risk of
abuse by genetic technology such as selective abortion, and eugenics policies, etc.
There is a general agreement concerning the impact of genetics on people lives and this is
coupled with caution towards cloning technology. In fact, the World Health Organisation
condemned human cloning - which means the production of genetic duplication of
another human where genetic code is copied deliberately from one person to make
another person with the same genetic material (HGPI, 2003; Lexican EncycloBio, 2004).
Their argument centred on social and ethical grounds in the sense that human cloning
would be contrary to human dignity and it would violate the uniqueness of the human
being as well as violating the rights of the child. The social implication of human cloning
is seen in disturbing the relations within the family structure. Moreover, human cloning is
expected to be used to reinforce rather than to combat society's prejudices, and
discrimination against vulnerable groups. Finally, WHO recognized the possibility of
using this technology as a profit making industry - with purely commercial interests - and
warned for the need for legal provisions in this area ( WHO, 1997).
There are different views towards human cloning. Briefly, supporters of this technology
argue of the potential medical benefits that will break new grounds and relief the
suffering of many around the world who may be able to use this technology to improve
their quality of life by improved medical treatment - including reproductive solutions and disease prevention (DH, 2003). Their opponents however, criticise human cloning on
a wide range of ethical and religious grounds that undermine the dignity and integrity of
human beings and violate the natural rights of humans. For example, the Vatican Mission
to the United Nations in 2003 has strongly opposed human cloning and supported a total
ban on cloning research altogether (UN, 2003). Yet, there is no consensus on the morality
of human cloning, even within secular research traditions (TCPS, 2002). The current
risks of physical, social and psychological harm associated with cloning - physical harm
to embryo as well as psychological harm to the right of the child and their family - is
significant and may justify a prohibition on such experimentation (BBC, 2002).
Based on the analysis put forward, there is a pressing need to develop ethical codes of
practice concerning genetic research relating to disabled people. UNESCO's Universal
Declaration on the Human Genome - which is based on a human rights approach to life recognises the need for regulating genetic research for protecting the dignity and integrity
of human beings (UNESCO, 1997). New power relations is necessary where genetic
technology researchers place their skills at the disposal of disabled people who should be
considered as equal partners in setting up the agenda of such codes and decide on their
components including enforcement mechanisms to deal with abuses targeting disabled
people. These mechanisms may include various measures such as social, economic, and
political including legal measures. The recent debate over genetic issues within the
discussion of the UN's draft disability convention is a step in the right direction (UN
ESA, 2004). Such debate can also benefit from the recently concluded consultations
concerning UN cloning treaty negotiations (UN, 2001).
The international convention on disability
It is widely established that disabled people have often been marginalized from
participation in development cooperation projects (PHOS, 2002; Yeo and Moore, 2003;
Thomas, 2004; Hulme, 2004) especially in policy planning both nationally and
internationally. This perpetuated their invisibility in society particularly in terms of their
equal human rights. The new disability convention comes to bridge this gap and focuses
specifically on the rights of disabled people (Rapley, 2003; Turmusani, 2003; Nagata,
2004).
The draft Comprehensive and Integral International Convention on the Protection and
Promotion of the Rights and Dignity of Persons with Disabilities (UN ESA, 2004) has
recognised the importance of involving disabled people in debating genetic technology
issues in its 4 th Session of the Ad Hoc committee held in the United Nations HQ, New
York between August 23 and September 3 2004. In particular, this issue has been brought
up by the Australian disability organisations (People with Disability Australia, Australian
Federation of Disability Organisations and (Australian) National Association of
Community Legal Centres. The current draft disability convention however, is still not
fully developed and it will be further deliberated in the Fifth Session of the Ad Hoc
Committee scheduled in January 2005.
One important issue discussed under the Australian proposal concerns the right to life.
The Australian proposal suggested that this right - which is mentioned in article 8 of the
convention - should be made more direct to deal with disabled people since the life of
disabled people are more likely to be at risk compared with other people. In particular,
the proposal concludes that genetic testing, genome project and other eugenic policies
represent threat to disabled people. This has been in fact highlighted by the genome
declaration - which is important to consolidate into the body of draft disability
convention - concerning the impact of bio medical issues over the lives of disabled
people (UNESCO, 1997). Eugenics, euthanasia, and recent developments in the cloning
project are all issues which affect disabled people directly or indirectly (Pfeiffer, 1994;
Shakespeare, 1995; Wendel, 1996, Fitzgerald, 1999).
The right to life however is inseparable from the right for a decent living especially for
those with mental disability and those in institutions. This does not undermine the right
for independent living and inclusion in community life ( Mandesi, 2004) . For preventing
violation against human rights of disabled people, the Australian proposal suggested the
inclusion of specific rights into the convention such as the right for freedom from torture
or cruel, inhumane or degrading treatment or punishment. In the same spirit, the proposal
has also noted a number of missing elements from the current convention including for
example the right to liberty of movement (particularly for disabled immigrants and
disabled refuges or disabled people in situation of emergency), and freedom of religion
(expressed previously as spirituality). The full text of the 4 th Session of the Ad Hoc
Committee is available on line at:
http://www.un.org/esa/socdev/enable/rights/ahc4ngocomments.htm
Currently there is a passing reference in a footnote to biomedical and genetic research
under Article 21 concerning the Right to health and rehabilitation. Specifically, item F of
this article reads 'Encourage research and the development, dissemination and application
of new knowledge and technologies that benefit persons with disabilities'. In the footnote
there is explanation which reads as follow: some members of the Working Group
suggested there should be a specific mention of the fields of (bio) medical, genetic and
scientific research, and its applications, and its use to advance the human rights of
persons with disabilities. It is important that this debate be developed further.
Another important issue discussed in the 4 th Session of the Ad Hoc Committee on
disability concerns the mechanisms for the implementation and monitoring of the
convention. Delegates emphasised the need for a separate article for this issue. The role
of the state in collecting information necessary for formulating and implementing policies
to give effect to this convention is highlighted bearing in mind legally established
safeguards for data protection and internationally accepted norms to protect human rights
and fundamental freedoms. The role of the State was similarly emphasised when
discussing the concept of reasonable accommodation 7 for disabled people according to
Article 4.
In this connection, the Australian proposal has suggested specific mechanisms for
monitoring the implementation of this convention at the national level including the
establishment of independent commissioner or ombudsman to observe the rights of
disabled people. At the international level, it is suggested the set up of a treaty monitoring
body made up of disability experts to deal with States submitted periodic reports which
outlines the progress in implementation of the convention at the domestic level.
Moreover, establish a procedure for individual complaints against states violation of
human rights of disabled people (including a framework for international cooperation)
and a position and office of Special Rapporteur on Disability.
Given the universal scope of this proposed convention, cultural and socio-economic
variations among societies in terms of level of development as well as national abilities to
accommodate various conventions articles should be clearly noted in this convention.
More emphasis should be given to research practices and the political impact of research
approaches in the identification and removal of disabling barriers. Although there is a
passing reference to genetic research in the discussion of 2004 Report, there is still clear
absence of proper terminology referring to disability research as political tool for the
empowerment of disabled people. This has also been voiced in the Australian proposal
which argued for a distinction in approaches to disability research from research that
treats people with disability as problems to be eliminated to an approach that allow their
emancipation.
Concluding Remarks
Recent years have witnessed a global shift in the perception and treatment of disabled
people towards a human rights perspective in line with the social model of disability
mentioned earlier (Oliver and Barnes, 1998). This perspective views people with
disabilities as not only subjects in the development process, but also partners and owners
of the development process and its production (Wardak et al, 2003). The shift to the
human rights perspective has been endorsed at the level of the United Nations, notably
through the United Nations Standard Rules on the Equalization of Opportunities for
People with Disabilities, 1993 which will have a supportive role to the future disability
convention and the commitment of the UN to establish the Ad Hoc Committee in 2002 to
address the issue of establishing a convention to protect and promote the rights of person
with disabilities.
This account addresses disability and genetic technology issues within the context of the
above draft disability convention. Specifically, it highlights how such technology
influences disabled people in relation to their right to life, stereotyping and level of
participation in society. The paper explores the wider and global implications of genetics
advancement and calls for more safety measures to be put in place, given the widespread
violations of human rights of disabled people worldwide (Despouy, 1993) . There is need
for a holistic approach to disability taking note that civil and political rights (freedom
rights including the right to life and participation) and economic, social and cultural
rights (equality rights) are interdependent and interrelated.
Notes
1. Researcher specializes in disability and development issues with policy research
experience. This brief analysis attempts to highlight few policy issues concerning
genetic technology in the new draft disability convention. Yet, further research on this
subject can enrich this analysis. Email: Turmusani@hotmail.com
2. The science of learning about genes is known as genetics. The Oxford English
Reference Dictionary defines genetic as an adjective relating to genes or heredity.
Gene on the other hand is defined as: a unit of heredity which is transmitted from
parent to offspring (i.e. eye colour), usually as part of a chromosome (Pearsall and
Trumble, 2002). Scientists use tools to find out about a person's genes or to change
them and this is known as genetic technology. The deliberate modification of an
organism by manipulating its genetic material is called genetic engineering (DAA,
1997).
3. In this context, Genetically Modified Food involves a process of isolating genetic
material from one organism and inserting a copy of it into another organism in order
to produce a species with new characteristics (e.g. some crops have been genetically
modified to make them resistant to weed killers, or to produce their own insecticide)
(http://www.maf.govt.nz/MAFnet/schools/activities/johngmf.htm). Some argue that
this process is unnatural and may involve long term damaging effects resulting from
mixing unrelated organisms with each others (IFST, 2004).
4. Currently, traditional methods of food production in many developing societies are
hampered by western technology. People have left their productive lifestyle and now
live as consumers of imported western products. This situation creates debts, poverty,
and disease, which often creates impairments. The relationship between healthy food
and disability has been well established in recent years. For example there is
increasing evidence of the relationship between malnutrition and impairment world
wide (DAA/UNESCO, 1995; DFID, 2000; WHO, 2004).
5. Promoting the human rights of all people has direct impact on peace building and
sustainable development. Protecting the rights of disabled people by specific
provisions reduces discrimination and socio-economic and political exclusion (UNDP,
1998).
6. The medical needs of people with impairment should not justify the controlling
practices of medical professionals over disabled people's bodies by acts of sterilization
and eugenics. On a larger scale, the exclusion of disabled people from mainstream
society will be perpetuated unless and until disability issues are considered as
inseparable component in the development agenda.
7. Reasonable accommodation' has been defined as: necessary and appropriate
modification and adjustments not imposing a disproportionate burden, where needed
in a particular case, to ensure to persons with disabilities the enjoyment or exercise on
a basis of equality with others of all human rights and fundamental freedoms.'
References
Albert, B (2004) The New Genetics and Disability Rights. Presentation to EU
Conference, ' Human Genetic Testing, What Implications' Brussels, May 6, 2004. By Bill
Albert, Chair of Bioethics Committee DPI Europe.
Barile, M (2003) Globalization and ICF Eugenics: Historical coincidence or connection?
The More Things Change the More They Stay the Same. Disability Studies Quarterly,
Spring 2003, Volume 23, No. 2.
Insurers Against Genetic Test Ban. BBC News, Wednesday, 7 February, 2001.
BBC (2002) Human Cloning: A Chance for a Perfect World, or a Nightmare Come True?
BBC News, 22 nd Jan 2002. URL: www.bbc.co.uk
BCODP (2002-3) The International Sub-Committee of BCODP: The New Genetics and
Disabled People. BCODP's National Council, February 2000.
DAA (1997) Life, Death and Rights: Bioethics and Disabled People. Special Bioethics
Supplement, December, 1997. Disability Awareness in Action: London.
DAA (2000) Special Report: Biotechnology. Disability Awareness in Action (DAA) The
international disability & human rights network. DAA, London.
DAA (2001) Genetic Discrimination, Disability Tribune - March 2001. Disability
Awareness in Action (DAA), London. URL: http://www.daa.org.uk /
Darwin C. (1859). The Origin of Species. London: J. Murray [1901]. 703p.
Degener, T (1998) The Global Picture and the European Situation
Regarding Bioethics and Genetic Engineering. The Independent Living Institute. URL:
www.independentliving.org/docs1/dpibethics4.html
Despouy, L (1993) Human Rights and Disabled Persons, United Nations Centre for
Human Rights, Geneva.
DFID (2000) Disability, Poverty and Development. Department for International
Development (DFID), London.
DH (2003) Genetic White Paper: Our inheritance, our future - realising the potential of
genetics in the NHS. Department of Health, London. URL: http://www.dh.gov.uk/
Diesfeld, K (1999) International Ethical Safeguards: genetics and people with learning
disabilities. Disability and Society, Vol.14, No.1, pp.21-36.
Fitzgerald, J (1999) Bioethics, Disability and Death: Uncovering Cultural Bias in the
Euthanesia Debate. In Jones, M and Marks, L (eds.) Disability, Divers-ability and Legal
Change. The Huague: Kluwer Law International.
Griffo , G (2003) Bioethics and Disability: an human right issue. A working conference
on the challenges of the new human genetic technologies - Within and beyond the limits
of human nature. Berlin, Germany, October 12-15, 2003.
HGPI (2003) Genome Glossary. Human Genome Project Information (HGPI). URL:
http://www.ornl.gov/sci/techresources/
Human_Genome/glossary/glossary_c.shtml
Hulme, D Moore, K Shepherd, A and Grant, U (2004) Draft Knowledge Paper: How can
Development Reach and Assist the Poorest? Chronic Poverty Research Centre, IDPM,
Manchester University.
Hurst, R (2000) Bioethics and disability. Presentation at: Let the world know International seminar on human rights and disability 5-9 November 2000, Stockholm,
Sweden.
IFST (2004) Genetic Modification and Food. Institute of Food, Science and Technology,
London. URL: http://www.ifst.org/hottop10.htm
Inclusion International (1996) Promoting and Ensuring Human Dignity and Human
Rights: response to the IBC preliminary draft of a universal declaration of March 1996 on
Human Genome and Human Rights. Ontario, L' Institute Roeher.
Jamieson, C (2001) Genetic Testing for Late Onset Diseases: In-depth Thematic Analysis
of Policy and Jurisdictional Issues. Health Canada, URL: http://www.hc-sc.gc.ca/iacbdgiac/arad-draa/english/rmdd/wpapers/thematic01.html
Lexican EncycloBio (2004) Definition of Cloning (downloaded Dec 2004). URL:
http://www.lexicon-biology.com/biology/definition_50.html
Mandesi, G. K (2004) Progress Report on UN Disability Rights Convention.
DisabilityWorld, No 25, September - November 2004. 25
Nagata, K (2004) Key Issue at Global and Regional Levels in the Process Towards the
International Convention on the Rights of Persons with Disabilities. Asia Pacific
Disability Rehabilitation Journal, Vol. 15 No. 1, 2004, pp 36-44.
Oliver, M and Barnes, C (1998) Disabled People and Social Policy, From Exclusion to
Inclusion. Longman, London.
Pearsall, J and Trumble, B (eds.) (2002) Oxford English Reference Dictionary. Oxford:
Oxford University Press , 2002.
Pfeiffer, D (1994) Eugenics and Disability Discrimination. Disability and Society, Vol.9,
No.4, pp.481-99.
PHOS (2002) Paying Attention to Persons with Disabilities in Development Activities:
Options and Lessons. Platform for disability and development co-operation (PHOS), .
Rapley, C (2003) Reconsidering the disability Dimension in Development Cooperation
Activities; building national capacities for full participation and equality. Regional
Workshop towards a Comprehensive and Integral International Convention on Protection
and Promotion of the Rights and Dignity of Persons with Disabilities. October 14-17,
UNESCAP, Bangkok.
Shakespeare, T (1995) Back to the Future? New Genetics and Disabled People. Critical
Social Policy, 44 (5).
Suzuki, D (2001) Revolutionary genetic technology requires a cautious approach. The
Galt Global Review, Galt Western Personnel Ltd. URL:
http://www.galtglobalreview.com/newtech/david_suzuki.html
TCPS (2002) Tri-Council Policy Statement: Ethical Conduct for Research Involving
Humans. Interagency Advisory Panel on Research Ethics.
URL:http://www.pre.ethics.gc.ca/english/
policystatement/policystatement.cfm
Thomas, P (2004) DFID and Disability: A Mapping of the Department for International
Development and Disability Issues. Disability KaR Knowledge and Research, DFID,
London.
UN (1993) The Standard Rules on the Equalization of Opportunities for Persons With
Disabilities. General Assembly Resolution 48/96 of 20 December 1993, United Nations,
New York. http://www.un.org/esa/socdev/enable/dissre00.htm
UN (2001) Ad Hoc Committee on an International Convention against the Reproductive
Cloning of Human Beings. General Assembly Resolution 56/93, 12 December 2001. UN,
New York. URL: http://www.un.org/law/cloning/
UN ESA (2004) Fourth Session of the Ad Hoc Committee on a Comprehensive and
Integral International Convention on the Rights and Dignity of Persons with Disabilities.
http://www.un.org/esa/socdev/enable
/rights/ahc4ngocomments.htm
UNDP (1998) Integrating Human Rights with Sustainable Human Development. United
Nations Development Program (UNDP), New York. URL:
http://meltingpot.fortunecity.com/lebanon/254/undp5.htm
Vatican (2003) Intervention by the Holy See at the Sixth Committee of the 58 th General
Assembly on the United Nations on the International Convention Against the Cloning of
Human Beings. URL: http://www.vatican.va/roman_curia/secretariat_state/
2003/documents/rc_seg-st_20031021_migliore-cloning_en.html
Wardak, A Faiz, I.M 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 Rights and Dignity of
Persons with Disabilities. June 2-4, ESCAP, Bangkok.
www.worldenable.net/bangkok2003/paperafghanistan.htm
Wendel, S (1996) The Rejected Body: Feminist Philosophical Reflections on Disability.
New York: Routledge.
Wertz, D (1999) Eugenics: Definitions. GeneLetter, February 1999, GeneSage Inc. URL:
www.genesage.com/professionals/geneletter/
archives/eugenicsdefinitions.html
WHO (1997) World Health Assembly Resolution Concerning Ethical, Scientific and
Social Implications of Cloning in Human Health. WHA 50.37, WHO, Geneva.
WHO (2004) Disability, including management and rehabilitation. Report by the
Secretariat, Executive Board 114th Session 8 April 2004. World Health Organization,
Geneva.
Wilson J (2001) Disability and the Genome: Resisting the Standardized Genomic Text.
Disability Studies Quarterly, Summer 2001, Volume 21, No. 3 pages 166-179.
Yeo, R and Moore, K (2003) Including Disabled People in Poverty Reduction Work:
Nothing About Us, Without Us World Development Vol.31, No. 3, p. 571-590 2003.
Why Sports Should Be Included in Disability Rights
Convention
By Cheri Blauwet, International Paralympian. Speech presented to RI/International
Paralympic Committee Symposium, Greece
Hello, and thank you for this opportunity to speak to you and to represent an entire world
of athletes with disabilities. I am a wheelchair racer from the United States and will be
competing in the 800 meter, 1500 meter, 5000 meter, and marathon distances in an
attempt to bring home a Gold in the next 10 days. In addition, I am also a medical student
at Stanford University in California, and am deeply interested and committed to the
development of human rights through sport. I see the impact that sport has made on my
own life, and much more so, the potential that it has to positively drive the movement for
human rights on a global scale.
What does this phrase - "human rights" - really mean to a person with a disability?
To me as a kid, it meant gaining an identity and fully connecting with my future as a
wheelchair user. I grew up on a farm in the Midwestern, agricultural section of the United
States. My father was a farmer, and my mother was a nurse. I was run over by a tractor
when I was 1 year old, and sustained a complete spinal cord injury. As I grew into my
youth, I was lucky enough to have a lightweight, functional wheelchair. I was also
fortunate to have people around me who encouraged me to be independent and to
challenge myself. I became involved in school government, music, and art. I was an
average, content child. However, it was not until I was introduced to adaptive sport that I
began to see my potential as an athlete. I discovered what it meant to achieve excellence.
8 years later, I am the winner of the New York City, Los Angeles, and Boston Marathons.
I hope to top this off with a win at the Paralympic Marathon on September 26 th . Until
sport entered my life, I was content with blending in and letting others lead the course of
my life. I was not a leader, nor a spokesperson, nor an advocate for people with
disabilities. This is my story - the story of a fortunate kid of the United States asserting
her human rights and gaining the identity of a leader.
To someone from Angola, human rights may mean being able to leave the home. A
survivor of a landmine blast or other act of war loses his legs and is suddenly left with
two options for mobility: crawl or be carried. His self-esteem plummets as his friends can
no longer invite him out and his family looks at him with pity in their eyes. His human
right to dignity is destroyed as he crawls through the streets of his village. By handing
this man a basketball and placing him in a wheelchair, his life is transformed. He can
wheel around, look his family in the eye, and take pride in the identity of "athlete." He
has regained self-esteem and dignity through sport - all at the cost of 4 wheels and a ball.
To someone from Afghanistan, human rights may simply mean being treated as a human.
A baby girl, born with no vision, will be automatically cast into a lesser strata of society
while she struggles in futility to prove her worth as a citizen. A blind person cannot work,
cannot go to school, and has no potential to marry or have a family. As she grows, people
consistently expect nothing from her, and in turn, she expects nothing of herself. She
does not know that human rights apply to her. By teaching this girl to run and placing her
hand into the hand of a guide runner, or by showing her how to ride a tandem bicycle, she
can show others in her country that a vision impairment does not always preclude
worthiness. Sport can open her neighbors' eyes just as effectively as it can open her own.
As the phrase "human rights" has come into fashion globally, different minority groups
have asserted themselves by pointing out the areas in which they are treated differently
than their peers. Why should skin color, sex, or religious preference decide what human
rights an individual is granted? Various governmental, non-governmental, private, and
non-profit organizations have mobilized worldwide campaigns to improve the situation
for their advocated group. Although disability is a sector of society that is still highly
marginalized and denied basic rights, it has been largely ignored in this global push. As
an organization, the International Paralympic Committee, through its promotion of the
UN Convention on the Rights of Persons with a Disability, has the ability to promote
sport on a global level.
As an individual whose life was changed by the opportunity to compete in sports, I truly
understand that to choose your own destiny is a human right. Whether it is an individual's
goal to be an athlete, musician, lawyer, or lawmaker, all people should be allowed to
mold their own lives and to define themselves freely. In other words, self-determination.
If I want to be the world champion in the marathon, and I am committed to the training
and lifestyle that will make me be a world-class athlete, than no lack of opportunity
should stand in my way. If I want to get up at 6:00 AM to go push 26 miles on a daily
basis for months at a time, I should not be prohibited from doing so by a set of steps that
leads up to the training path. In addition, I should be able to say with pride that I am a
wheelchair marathoner, and that in defining my course, I have the potential to be a
member of the United States Paralympic Team. This is a human right.
In addition, for people with disabilities, sport has an even larger potential to provide an
innovative method of rehabilitation that will promote physical health, mental health, and
participation in society. Because the disability community is a minority group that is
defined by a physical state, the opportunity to be active and involved in a positive social
circle promotes the ability to mitigate all negative factors that may worsen or complicate
a disability. In fact, to coin a term often used in discussions of disability rights, we can
use the lever of sport to promote "This Ability" rather than "Dis-ability."
Because I grew up with paraplegia, I developed a strong upper body and was able to push
myself, transfer into cars, and achieve basic independence. However, through my
participation in sport, I have now developed the strength, agility, and chair handling skills
that enable me to participate competitively in medical school, where physical tasks are
often an imperative part of my occupational duties. My physical health is at a level far
exceeding that of most wheelchair users, simply because I enjoy competing and training
in sport. In addition, my confidence, self-esteem, and - although it's arguable - maturity,
have all been built through participation in sport. Learning how to win with pride, lose
with grace, and build relationships with a team has given me the emotional and mental
skills that are also a key to the medical profession. Sport, as you can see, spreads its reach
to all areas of life.
As strong as the weakest link: An incentive to
development organisations and governments to make
disability an integrated element of policy and action
This text is a translation of a Dutch DCDD brochure 'Zo sterk als de zwakste schakel'.
The Dutch brochure can be ordered by sending an e-mail to dcdd@dcdd.nl or visit the
webpage www.dcdd.nl?2485.
Inclusive policy
Generally speaking, disability is 'invisible' in development cooperation. In the
Netherlands, hardly any policy is being developed to incorporate and integrate disability
in development cooperation. But no development target will be attainable if disability is
not incorporated in the mainstream of every development policy and every action. How
else can we achieve the Millennium target of reducing poverty by half by 2015, or the
target of providing education to all children on earth by 2015? Truly inclusive policy
must be developed, for people with a disability or a chronic illness, but also for their
families and the communities to which they belong. For everyone, in short.
There is increasing attention for disability in countries near The Netherlands. In
Germany, Austria and England, departments for development cooperation are drafting
new types of disability policies. In Norway and Italy policy documents have already been
written which aim at inclusive policies. The Scandinavian countries, which are even
farther ahead, inclusive policies are being evaluated. The World Bank appointed a
disability advisor in 2002, the European Committee has taken steps in this field with the
publication of a Guidance Note and the United Nations are preparing a convention on
disability and human rights. But The Netherlands are lagging behind. That is a pity,
because it is precisely the Netherlands that has been a pioneer in the field of development
cooperation. The country now has the opportunity to link up with the international trend
to establish and assert its prominent role in poverty reduction in this field as it has in
others.
The terms we use, and why
Disability
DCDD prefers to use the broader concept of 'disability' instead of the word 'handicap',
which is more commonly used in Dutch, one reason being that the concept of disability
includes chronic illness. Disability denotes a limitation in a person's functioning and/or
activity resulting from a physical or mental disorder and/or a chronic disease. DCDD
defines disability along the lines of the social model, according to which limitations must
be stood in an environmental sense: it is not human beings who are imperfect, it is their
environment that is not adapted to limitations. In Dutch, it is hard to escape the use of the
word 'handicap', even if it regarded as stigmatising. We may sometimes use the word
'limitation', a word that is not yet current in this connection.
Inclusive policy
The opposite of exclusion would be inclusion, but that word is not commonly used in
Dutch in the sense we mean. The terms 'inclusion' and 'inclusive' are used in English. We
have adopted these terms and so speak of 'inclusive policy'.
Mainstreaming
We speak of 'mainstreaming disability' to refer to integration of disability in policy.
Mainstreaming means to integrate into, literally, the main stream (the interests of) all
people, with regard to policy as well as action.
Disability
According to WHO statistics, 10% of the world population is disabled in some way.
Worldwide, the great majority of people with disabilities live below the poverty live.
Disability is inextricably connected with poverty, being the cause as well as the result of
poverty.
People with disabilities are trapped in a vicious circle: Because they disabled, they are
often excluded from all kinds of social processes. Being excluded from, notably,
education, health care and the labour market, situation will actually deteriorate.
Representation of interests at the local and national levels is required to make disability
visible and to build a truly inclusive society. People with disabilities should be able to
make themselves heard. Without the input of (organisations of) persons with disabilities,
decision-makers will not take note of their interests. It happens all too often that decisions
are taken to improve the conditions of disabled people without their being consulted.
Which is why 'nothing about us without us' is an important policy principle.
Women with disabilities are often doubly affected. They rarely participate in schooling
projects or employment creation projects. There are signs that, while HIV/Aids infection
is going down on average, the trend is the reverse in women with disabilities.
UNESCO figures show that the large majority of children with a disability or a chronic
illness have no access to education. Worldwide, the number of girls that do not go to
school is about as large as the number of children with disabilities who do not receive
education. Accessibility, physical and in terms of resources, plays an important role here,
but social and cultural factors may also prevent children from participating in education.
Children with disabilities do not receive formal education because their environment
thinks that it is not worthwhile. 'Education for all' is unattainable without including
children with disabilities.
The present situation
Study
Recently, the results of a study among organisations in development cooperation became
available. The goal of the study, which was commissioned by DCDD, was to obtain
insight into the manner in which organisations incorporate disability into their policies
and activities. In view of the Millennium targets, and with the UN convention on
disability and human rights in the offing, DCDD thought it important to take stock of the
situation in the Netherlands. The respondents of the study were general development
organisations and specialised NGOs, that is to say, NGOs that have chosen disability as
one of their fields of activity.
Blind spots
The general picture that emerges from the study is that disability is not very visible in the
policies of Dutch development organisations. Is that a cause for concern? Do not all
organisations carry out useful work, also with regard to disability? They do, but from the
answers to the questionnaire employed in the study, it appears that the absence of
disability as a theme in policy agendas causes many blind spots.
Has any policy regarding disability been developed?
Most organisations do not include disability in their mission or vision statements. In some
cases, the reasons are obvious. For example, one would assume that health care
organisations by their nature include the disability dimension. But is that really the case?
It appears that, in actual practice, many health care provisions are not accessible for
people with physical limitations. To prevent such omissions, the position and interests of
people with disabilities should be taken into account in policy development at an early
stage: when selecting partner organisations, for instance, or when applying for EU
subsidies, in the process of preparatory research, or in the development of expertise.
Another example: organisations that mention poverty reduction as part of their mission
will normally have regard for the role of disability, as a cause of poverty and also as an
element in its continuance. Yet, for these organisations too, to include the disability
theme in their policies, whether with regard to their own targets or as part of the
assessment criteria for projects or partner organisations, would increase their range and
effectiveness. A substantial number of people with disabilities is able to work and so, not
only to provide for themselves but also to contribute to the development of their region
and country. However, being more or less 'invisible', people with disabilities are not
reached by poverty reduction programmes. Women worldwide are defined as a
marginalised group and form a target group for micro-financing programmes, for
example. But alas, persons with disabilities are too often ignored or overlooked, and so
are denied access to micro-credit.
Have any concrete targets been set in respect of disability?
If no concrete targets are formulated, people with disabilities often are not included in
programmes. For instance, when building a maternity clinic, has it been laid out, and
fitted and furnished to accommodate disabled women? Is information available in
HIV/Aids projects for deaf and blind persons? Do educational programmes guarantee
participation of children with disabilities? Are partner organisations sought among selforganisations of people with disabilities? And so forth.
Are there any specific programmes or activities for people with disabilities?
Most effective in disability matters is the twin-track approach, i.e., to include disability in
mainstream policy and activities while also developing projects that specifically target
disability. Disabled people also benefit from specific types of projects, such as
empowerment projects for disabled people's organisations, setting up workshops for the
production of assistive resources, and Braille courses.
Practical strategies that are applicable in communities, such as Community Based
Rehabilitation (CBR), are necessary to work, in collaboration with people with
disabilities and their communities, to reduce or eliminate restrictive circumstances and to
create access to provisions for everyone.
Are effectiveness measurements or evaluations in place specifically with regard to
disability?
If disability is not an assessment criterion, it will not become clear to what extent
disabled persons and their families are reached through actions or policies. Here too,
there is a vicious circle that has to be broken. In the present situation, a development
organisation will only take action or develop a disability policy when its partners asks it
to. But because people with disabilities are often invisible for partner organisations as
well, that question will not readily be asked.
Evaluations and effectiveness measurements are of crucial importance to increase
activities in the field of disability. After elections have been held, the question may be
asked: did people with disabilities have an equal chance to participate? When a water
project has been set up, ask if it is accessible to persons with physical limitations. After a
disaster or in a war situation, did people with disabilities share equally in the emergency
aid provided? Has it been investigated how people with disabilities are discriminated
against? How do information projects deal with prejudices and stigmata regarding
impairments? And so forth.
The pertinent question is: why are people with disabilities as invisible as they are in
general poverty reduction programmes? People with disabilities can contribute to society
and be an economic factor. People who could be self-sufficient are written off unjustly. If
everybody has equal rights to participation in society, why are people with disabilities not
prioritized? Is the chain not as strong as its weakest link?
The ideal: mainstreaming
DCDD has developed a vision on mainstreaming disability for Dutch development
organisations. In the ideal case, disability is a guideline and a benchmark in every phase
of any policy. Like gender, disability should be a theme running through all policy,
evident in the development, definition, execution and evaluation of policy. Care should
be taken that mainstreaming of disability becomes just a word without any concrete
meaning, an excuse for not targeting it specifically.
To achieve mainstreaming of disability, DCDD advises the following strategies:
• Development of a national strategy for including the disability dimension in
development cooperation.
• Making available a substantial budget for development programmes aimed
specifically at empowerment of disabled people.
• Working to increase knowledge of disability in policymakers, service providers and
people with disabilities themselves, through development and exchange of knowledge
and experience.
• Promoting closer cooperation between multilateral institutions and in bilateral
relations with governments, NGOs and organisations of persons with disabilities.
• Conducting research into and publishing about the possibilities that development
organisations and governments have to improve their policies and the way in which
they execute these.
• Linking up with similar initiatives in other countries.
DCDD
DCDD will follow up the study and publish about trends and changes in the field of
development cooperation in relation to disability. DCDD is also preparing publications
on subjects such as Education and disability in development cooperation and Community
Based Rehabilitation (CBR).
DCDD works indirectly to improve the situation of people with disabilities in developing
countries. DCDD is an activating network; we bring together organisations and key
persons in the fields of development cooperation and disability, we facilitate exchange of
information, organise meetings, and work purposefully to influence policies and
awareness-raising activities. DCDD's activities are developed on a project basis by
working groups and committees. Volunteers contribute on the basis of their expertise and
availability. DCDD itself does not carry out development projects, nor does it finance
them.
DCDD enables you to get information and to come into contact with people who can help
you to devise more inclusive policies, or set up inclusive projects.
The manner in which Dutch development cooperation organisations pay attention to
disability. The study report of a baseline measurement, commissioned by DCDD. This
report can be downloaded from: www.dcdd.nl?2447 (in Dutch language only)
DCDD
Postal address:
Postbus 3356
3502 GJ Utrecht
The Netherlands
Telephone 0031 (0)30 291 67 11
Fax 0031 (0)30 297 06 06
E-mail dcdd@dcdd.nl
Website www.dcdd.nl
© DCDD, November 2004. All copy in this brochure may be used freely on condition
that the source is clearly indicated. Text by Corine Nederlof.
Georgian Police Beat Disabled Demonstrators on
International Disability Day
By Koba Nadiradze, Executive Director (nadira@disability.ge, nadira@gol.ge) and
Georgian NGO Coalition for Independent Living (www.disability.ge/en/). The following
is the Georgian NGO Coalition for Independent Living’s statement of what happened on
the International Day of Disabled Persons (December 3).
As it is known worldwide, December 3 is the International Day of Disabled Persons. The
Georgian NGO Coalition for Independent Living, which unites motivated NGOs founded
by the people with disabilities and their family members, decided to celebrate this day
with a demonstration at the State Chancellery of Georgia. Representatives from the
various NGOs including the Blind Association, different NGOs working on issues of
disabled veterans, children and adults with different kinds of disabilities, their family
members and parents took part in the demonstration.
The main purpose of the demonstration was to arrange a dialogue with the Prime Minister
to discuss the numerous barriers facing disabled Georgians including an inaccessible
physical environment, inaccessible public buildings and public transport, inaccessible
media and communications technology for the members of the Deaf and Blind
Associations, as well as barriers to an education, employment problems, and so on.
It is impossible to solve the above listed and many other problems without developing a
strategy, and the government must clarify and improve the State policy for people with
disabilities and include people with disabilities in developing such policy.
The demonstration was peaceful, and the only demand made by the demonstrators was to
have a dialogue with the government.
In spite of the fact that the people who took part in the demonstration were standing from
12 noon and waiting for some decision from the State Chancellery, there was no answer.
In spite of the cold weather, demonstrators decided not to go home before the meeting
was arranged. In the evening, when it was dark and even colder, they made a fire and
pitched a tent. The demonstration was peaceful and the members of the Blind Association
were singing.
What happened next seemed incomprehensible. The police came, dispersed the
demonstration, destroyed the tent, extinguished the fire and beat the members of Deaf
and Blind Associations.
The Georgian NGO Coalition for Independent Living is protesting this indignity and is
asking for the support from media and society to obtain an apology from the person who
ordered the dispersion of the demonstration.
On the following day, the Prime Minister met a representative from the Coalition, and
they granted the meeting with the Prime Minister requested by the representatives of the
Coalition which was held from December 13 -18, 2005. The results of the meeting will
be made public.
In addition, on December 7, 2004 the office of the Ombudsman of Georgia in cooperation
with the Eurasia Fund held a round table. Georgian disability NGOs and other NGOs
whose work somehow addresses disability issues took part in the round table.
At the beginning of the round table, participants acknowledged the negative message sent
by the government by dispersing the peaceful demonstration at the State Chancellery of
Georgia on the International Day of Disabled Persons (December 3). Participants asked
the Ombudsman and the government for their rapid response to these actions.
The Georgian NGO Coalition for Independent Living thinks that it is necessary to
coordinate communications regarding this issue. This was supported by all
representatives of the participating NGOs and the Ombudsman of Georgia.
Ombudsman of Georgia and a representative of the Eurasia Fund offered organizational
and financial support to the round table participants and that the communication
coordination problem will be introduced to the government.
Participants of the round table agreed that the next meeting would be held on December
21, 2004, where NGOs will introduce their views on the issues being addressed.
Press conference
On December 7, 2004, the Georgian NGO Coalition for Independent Living held a press
conference addressing the dispersion of the peaceful demonstration at the State
Chancellery of Georgia by the police on the International Day of Disabled Persons
(December 3). The story was covered by the press and spread by electronic media. The
mass media covered and acknowledged the negative impact and message sent by the
actions of the police - dispersion of the peaceful demonstration at the State Chancellery
of Georgia - and supported all of the issues raised by the Georgian NGO Coalition for
Independent Living.
Inclusive Education in Russia: a status report
By Denise Roza, Perspektiva (droza@online.ru)
Introduction: Disability in Russia
There are over 10 million disabled people in Russia, nearly 700,000 who are children and
young adults (18 years of age or younger). In Russia, disabled people have traditionally
been isolated from the mainstream community.
Since the 1990s, with the emergence of disability and parents' non-governmental
organizations (NGOs), and the passage of disability legislation, significant changes have
occurred to improve the quality of life of persons with disabilities. Today, employment
programs for disabled people and a handful of integrated educational programs have been
launched in several Russian cities. Kremlin officials on many occasions have publicly
acknowledged the problem of inaccessibility and the lack of federal support for the
disability community.
Despite these positive changes, disabled people in Russia still face daily discrimination,
as well as physical barriers to education, employment, recreational activities, family life
and participation in community life. Although disability legislation has been passed on
the federal and local levels, implementation mechanisms, such as procedures for fining
inaccessible public places, have not been codified, rendering legislation largely symbolic
and ineffectual. Furthermore, in August, despite protests all over the country, the Russian
government signed into law a bill that will replace benefits such as subsidized
transportation and medicine with cash payments, dismantling remnants of the Soviet
welfare state and affecting the lives of millions of disabled Russian citizens. Parents of a
disabled child will receive approximately $15 and limited medical care and free
medicine. These funds will supplement the miserly monthly pension of $40-70 / month
that parents - in many cases single mothers - across Russia receive.
Education: Rights and Realities
Article 43 of the Constitution of the Russian Federation guarantees the right of every
individual to education, and the Federal Law on the Social Protection of Disabled Persons
stipulates that the government must provide all disabled people with the necessary
conditions to receive a basic primary, secondary, or higher professional education in
accordance with needs and abilities of each disabled person. Disabled children and young
adults have the right to be educated in a mainstream school setting with their peers.
However, statistics show a different picture. According to Ministry of Education figures,
there are approximately 1,500,000 children of school age with special needs in Russia:
500,000 of them are officially considered disabled children. In 2003 approximately
30,000 of these children studied at home, 200,000 in specialized schools or classes, a
small percentage studied at mainstream schools and, according to members of the
disability and parents' movement, the rest of these children - more than 150,000 -
received no education at all. Only 20 of the 89 territorial divisions of Russia have special
educational institutions that can serve the needs of children with all kinds of disabilities.
As a result, many disabled children are forced to live and go to special schools far away
from their families.
Disabled children and young people face enormous barriers to their Constitutional right
to education: the "diagnosis" of "uneducable" given to children after a brief examination;
the lack of trained specialists; physically inaccessible schools; teachers and
school/university directors who are unaware or misinformed about disability issues; lack
of accessible public transportation in cities; lack of facilities, equipment and services for
students with disabilities; and the prevailing societal misconceptions, stereotypes and
discriminatory practices.
Amartya Sen: Helping Disabled People Out of the
Shadows
By Amartya Sen and James D. Wolfensohn, originally titled "[Nobel Laureates] Helping
Disabled People Out of the Shadows" from The Korea Times, 12/21/2004
Disabled people are not only the most deprived human beings in the developing world,
they are also the most neglected. It is important to acknowledge that more than 600
million people in the world live with some form of disability. More than 400 million of
them live in developing countries, often amidst poverty, isolation and despair. Not only
are they, typically, the poorest of the poor, but they also need more money and help than
able-bodied people to overcome their handicaps, and attempt to live normal lives.
As if the many hardships are not painful enough, disabled people can face exclusion and
discrimination at the hands of their fellow citizens, even their own families who fear they
will be tarnished by association. For example, many disabled children, whether deaf or in
wheelchairs, are denied an education. Disabled people are at increased risk of contracting
HIV/AIDS due to physical and sexual abuse, and a lack of preventive outreach tailored
specifically for disabled people. And yet, experience shows that in countries where
people with disabilities have greater access to their broader communities, they can
flourish.
It is estimated that at least 10 percent of the developing worlds population is disabled in
one way or another. In fact, some estimates put the figure closer to 20 percent. Not only
do these people deserve the right to global attention because of the extreme nature of
their deprivation, but it is also important to recognize the impossibility of achieving large
reductions in poverty and illiteracy in the world (as demanded by the United Nations
Millennium Development Goals, endorsed by more than 180 world leaders in September
2000), unless special efforts are made to bring disabled people into the mainstream.
Take the case of education. An estimated 40 million of the more than 100 million
children out of school have disabilities. And yet most of our schools are built without
access for children who have physical disabilities, and most teachers are not trained to
deal with children who have handicaps of one kind or another, including learning
disabilities.
However, with some basic social help, the terrible consequences of disability can be
substantially overcome. It is also important to see that most disabilities are preventable.
Only a small proportion of the 600 million people living with disabilities were born that
way. For example, malnutrition and lack of access to clean water can lead to blindness.
Other disabilities can result from HIV/AIDS, measles, polio, road crashes, injuries at
work, discarded mines or unexploded ordnance. While a rapidly aging population creates
a growing source of disabling conditions, the incidence of disability can be significantly
reduced through well-designed social and medical attention.
As we consider how best to respond to the needs of disabled people in poor countries, it
is important to understand that simple and inexpensive solutions do exist in many cases.
For example, during renovation or restoration efforts in the wake of natural disasters or
conflicts, it is possible to make sure that the newly built or repaired buildings are made
accessible to people with disabilities; this can add very little to the costs involved. Take
another example: The movements of disabled and old people can often be restricted by
high curbs that flank their streets, but, as a good many countries have already shown,
these curb designs can be changed at little cost.
Also, many people are in a gray area with mild to moderate mental health disorders,
intellectual disabilities or physical handicaps. Policies that can help them join the
mainstream of society can certainly be devised. A number of developing country
governments are working with national disability groups to overcome restrictive barriers.
In Brazil, which is one of the first developing countries to improve its collection of
disability data, surveys showed that large numbers of children with significant visual
disabilities simply needed spectacles. The World Bank has been closely involved in these
efforts, both in terms of providing glasses, hearing aids and other interventions, but also
in gathering better statistics on people's disabilities and their consequences. In this latter
respect, social scientists also have a responsibility to investigate the incidence of different
handicaps and their remedies.
We have to be determined to bring disabled people out of the shadowy world in which
they are typically confined. This task demands more global cooperation, involving
national and international institutions as well as organizations of disabled people
themselves. The United Nations is working on a Convention on the Rights of Disabled
People to help move disabled people from exclusion to inclusion.
Disabled people want what we all want - the chance to get educated, find rewarding
work, lead worthwhile lives and be valued members of their community and in the world
at large. These desires need not be just idle dreams, since much can be achieved if we are
ready to give this extensive problem the attention and commitment it demands. We need
to mobilize the determination to do just exactly that.
Amartya Sen is Lamont University Professor at Harvard University, recipient of the 1998
Nobel Prize in Economic Science and former honorary president of OXFAM. James D.
Wolfensohn is president of the World Bank Group and a former board chairman of the
International Federation of Multiple Sclerosis Societies.
Summary of RI/International Paralympic Committee
Symposium
Right to Participate, Rights to Win: International Paralympic Symposium Addresses the
Role of Sport and Recreation in the UN Convention on the Human Rights of Persons
with a Disability
On 17th September 2004, in Athens, 3,837 athletes from 136 nations were present to
participate in the Opening Ceremonies of the XII Paralympic Games. As the second
largest sporting event in the world, the Paralympics provide Olympic-level sporting
opportunities for athletes with a disability from around the world. On the same day, the
International Paralympic Committee (IPC), in collaboration with RI, which stands for
Rehabilitation International as well as Rights and Inclusion, hosted the first International
Paralympic Symposium on Disability Rights. The event, aimed to promote the draft UN
Convention on the Rights and Dignities of People with Disabilities, advocated for the
human rights of both Paralympic athletes and citizens with disabilities at large. These
include but are not limited to: the right to play, the right to sport and recreation, and the
right to full participation in society. It is vital that persons with a disability and
organizations working with such persons are educated in the process and get involved in
their own communities to support the work of the UN towards a Disability Convention.
The Paralympic Games were logically chosen as the site for launching the support of the
IPC towards the draft UN Convention. As the UN Secretary General explains, "the
Paralympic Games are a powerful demonstration of the vitality and achievements of
persons with a disability world-wide". The athletes exemplify a human spirit that inspires
and excites the world, they show the energy that sport has to offer in changing
perceptions, and because sport is a common global language, the Paralympics have the
opportunity to unite us all. In September 2004, the IPC adopted a position statement on
human rights that serves to reinforce its core belief that every individual should enjoy
access and opportunities to leisure, recreation, and sporting activities. This right should
be granted and guarded by the legal and administrative systems of responsible
governments and communities. The IPC believes both sport and human rights are for all.
While improvements have been made in some countries for persons with a disability, the
fact remains that without an international human rights convention, the rights of those
members of society cannot be effectively guaranteed. As the largest minority group in the
world, these individuals have not received the same assurances of rights that other
minorities have achieved. In all regions and countries of the world, they continue to face
discrimination in numerous ways. A UN Convention will have a global affect and will
strengthen the ability to advocate for human rights both locally and nationally.
In the context of sport and recreation, persons with a disability have, among others, the
right to:
• Participate in sporting and recreational activities at all levels;
• Organize and participate in sporting activities;
• Receive the necessary instruction, training and resources; and
• Access sporting, recreational and leisure venues.
In addition, children and youth with a disability have the right to equal access in sporting,
recreational and leisure activities, including those within the educational system. They
also have the right to engage in play. Despite these obvious assertions, these rights
remain unattainable for most citizens with disabilities.
"If I want to be the world champion in the marathon, and I am committed to the training
and lifestyle that will make me be a world-class athlete, than no lack of opportunity
should stand in my way. If I want to get up at 6:00 AM to go push 26 miles on a daily
basis for months at a time, I should not be prohibited from doing so by a set of steps that
leads up to the training path. In addition, I should be able to say with pride that I am a
wheelchair marathoner, and that in defining my course, I have the potential to be a
member of the United States Paralympic Team. This is a human right."
- Cheri Blauwet, 2000 and 2004 Unites States Paralympic Athlete
International human rights law also recognizes that all people have a right to rest, to
leisure time and to participate in recreation and sports. In 1976, the first International
Conference of Ministers and Senior Officials responsible for Physical Education held by
UNESCO affirmed, among other things, the right of persons with a disability to
participate in physical education and sport. The treaty body which monitors the
implementation of the Covenant on Economic, Social and Cultural Rights in General
Comment 5 on Disability has recognized the relevance of these broad rights for persons
with a disability which extend to participation in tourism and recreation activities,
including sport. Rule 11 of the UN Standard Rules on the Equalization of Persons with a
disability outlines the measures States should take to ensure that persons with a disability
have equal opportunities for recreation and sports.
As we can see through observations of our global society, persons with a disability
undoubtedly face discrimination. In some cases, this discrimination manifests itself in the
complete denial of access to participation in recreational activities, including competitive
sporting activities and spectator sporting events. Even in cases where access to sports and
recreational activities may be open to persons with a disability, they may nonetheless face
restrictions owing to physical access, prohibitive costs, inequitable services and
programmes, or the poor quality of integration. Lack of understanding and awareness of
how to include persons with a disability in sport and recreation has contributed to
exclusionary practices and, accordingly, their participation remains undervalued and
ignored. It is therefore essential that the convention currently being drafted within the UN
explicitly include a provision on this right and its specific application to persons with a
disability.
Sports and recreation are also related to rehabilitation and education. The origin of the
Paralympic Movement lies in rehabilitation. In 1944 Dr. Ludwig Guttmann, at the request
of the British Government, opened a spinal injuries centre at the Stoke Mandeville
Hospital. A new approach introduced sport as a paramount part of the remedial treatment
and total rehabilitation of persons with a disability. Rehabilitation sport evolved rather
quickly to recreational sport and within only a few years, the next step was competitive
sport. Sports and recreation assist in achieving the goals of many rehabilitation
programmes. In the words of Prince Ra'ad Bin Zeid of Jordan "Sports have proven to be
an invaluable vehicle for early rehabilitation for persons with a disability and plays an
important role in their integration". It is critical for persons with a disability to have the
means to comprehensive and proactive rehabilitation, including the opportunity to
participate in sport and recreation.
It is also important to recognize the role of sport and recreation in education and
professional development. The physical strength, self-determination, and empowerment
often realized through participation in sport and recreation can raise the bar for persons
with a disability to achieve excellence in these areas. In the words of a current
Paralympic athlete, " Through my participation in sport, I have now developed the
strength, agility, and chair handling skills that enable me to participate competitively in
medical school, where physical tasks are often an imperative part of my occupational
duties."
The IPC believes strongly in the right to participate in sport and recreation activities. As
stated in its position statement, the IPC agrees to continue to promote its philosophy on
human rights and actualize its policy through the Paralympic Games and other IPCsanctioned sporting activities. At a grassroots level, this is often achieved through its
membership and work with nations, regions, sports, and groups representing persons with
a disability.
For more information on this topic, please consult the Toolkits developed by RI and the
IPC on the rights of persons with a disability to leisure, sport and recreation. The toolkits
are available on the IPC website at www.paralympic.org.
The International Paralympic Committee (IPC) supervises and co-ordinates the
Paralympic Summer and Winter Games and other competitions, of which the most
important are World and Regional Championships. The IPC, headquartered in Bonn,
Germany, also supports the recruitment and development of athletes at a local, national
and international level across all performance levels.
Contributions to this article have been made by RI and the Center for Sport in Society at
Northeastern University.
A Glimpse of the New RI Executive Committee
By Michele Morgan (michele@riglobal.org)
RI, an international organization that has been working to promote the rights and
inclusion of people with disabilities for over 80 years, elected a new Executive
Committee at its 20 th World Congress in Oslo, Norway in June 2004. The new RI
Executive Committee (EC) - with 21 members, half of whom are persons with
disabilities, from six different geographic regions and representing a variety of
government, advocacy and NGOs - represents the hundreds of member organizations in
80 countries that comprise RI.
RI's EC is composed of a President, Immediate Past President, Treasurer, a Vice
President and Deputy Vice President for each of the regions - Africa, Arab, Asia Pacific,
European, Latin American and North America - as well as the Chair of each RI
commission, which includes the Education Commission, International Commission on
Technology and Accessibility (ICTA), Commission on Health and Function, Commission
on Policy and Services, Social Commission and the Commission on Work and
Employment.
Several of RI's EC members are returning to serve on the committee, but the major of the
EC members are new.
Highlighted here are some of the RI EC members:
Michael Fox from Australia was elected as the new RI President at the Oslo Governing
Assembly. Mr. Fox, an experienced architect, planner and access consultant who's been
involved in architecture, access and equity since 1972, is the director of the Sydney
company Access Australia and the related architectural company Michael Fox Architects.
Mr. Fox has been involved with RI since 1979 and has served as Global Chair of ICTA
since 1996.
Mr. Fox has actively promoted access and equity in Australia and the Asia Pacific Region
since the mid 1970s. His involvement in Australia included being the Chair of the
Standards Australia Committee 1974 to 1984, during initiation, research and
incorporation of AS1428 into national building legislation. Mr. Fox's access and equity
projects included strategies and programs for the Sydney 2000 Olympic & Paralympic
Games.
Kenneth Aitchison from the U.S. is the new Treasurer for RI. Mr. Aitchison retired as the
President and CEO of Kessler Rehabilitation Corporation after 24 years of service. Under
his leadership, Kessler was consistently named as one of the nation's top rehabilitation
facilities by U.S. News & World Report. Mr. Aitchison has served on a number of boards
and is currently a member of the Board of Directors of the American Medical
Rehabilitation Providers Association.
Sebenzile Matsebula from South Africa is the new RI Deputy Vice President for the
African Region. Ms. Matsebula is the Director of the Office on the Status of Disabled
Persons (OSDP) in the Presidency. OSDP has a mandate to coordinate, facilitate, monitor
and evaluate the implementation of the government's white paper on an Integrated
National Disability Strategy, which provides guidelines on the integration of disability
into mainstream society. Ms. Matsebula, who has a disability, has worked for many years
with the disability movement in the struggle to advocate and promote the rights of
disabled persons. Currently, she is participating as a government representative at the UN
Ad Hoc committee meetings towards a UN Convention on the Rights of People with
Disabilities. Ms. Matsebula has worked extensively with the World Bank, The UN
Association International (UNAIS), the World Health Organization, and the International
Labour Organization.
Ray Fletcher is the Chair of RI's Work & Employment Commission. Mr. Fletcher
recently retired as the Executive Director, HR & External Affairs for Remploy, the UK's
leading provider of employment opportunities for people with disabilities, which supports
around 12,000 disabled people in the UK. Currently, Mr. Fletcher does voluntary work
and serves on boards and in organizations related to the employment of people with
disabilities. During his time with Remploy, Mr. Fletcher helped introduce a Learning
Centre in each of Remploy's over 80 locations, which had a significant effect on
removing long-term barriers and enabled more disabled people to choose and decide their
own career paths.
Mr. Fletcher is also involved in developing RI-UK, which is a reorganization of RI
activities in the UK targeted to increase involvement of a broad spectrum of
organizations that share the same goal of full inclusion, independence and participation of
people with disabilities in society. Mr. Fletcher was recognized by HM Queen Elizabeth
II for his work for people with disabilities in the UK and was awarded an OBE at
Buckingham Palace in July 2004.
Anne Hawker, Chair of the Social Commission, is currently employed by the Accident
Compensation Corporation, a government insurance company in New Zealand, as a
Manager of the Rehabilitation Improvement team. Ms. Hawker has long been involved in
disability issues as a care and service provider, advocate, government policy maker and
as a person living with a disability herself. She has been active in RI for many years and
helped host the 1996 RI World Congress in New Zealand. Among the things Ms. Hawker
wants to see the Social Commission accomplish is to help create an environment where
the UN Convention on the Rights of People with Disabilities can be an effective rights
based tool.
Penny Price from Australia is the Chair of RI's Education Commission and has worked
with disability issues throughout her career, including running schools for children with
disabilities, researching strategies to support parents to promote the maximum develop of
their young disabled children and teaching student teachers at a university level in teacher
preparation programs designed to prepare them to teach diverse ability levels in regular
schools. Ms. Price has also worked extensively in seven South Pacific countries, assisting
NGOs to develop programs for young children with disabilities and advocating to
governments to include all children in schools.
More recently Ms. Price has been working for the United Nations Economic and Social
Commission for Asia Pacific in Bangkok, implementing the first and second Decades for
Disabled Persons, and was involved in the development of the Biwako Millennium
Framework for Action Towards an Inclusive, Barrier-free and Rights-based Society for
Persons with Disabilities in Asia and the Pacific. She is currently working with UNESCO
on a project to identify good practices in the inclusion of children and youth with
disabilities in national education systems.
Khaled El Mohtar from Lebanon has been an active and dedicated member of RI for
many years. Mr. El Mohtar, the new RI Vice President for the Arab Region, served on the
EC before as the Deputy Vice President for the Arab Region. He is a Founding Member
and the Director General at the National Rehabilitation and Development Center
(NRDC). Mr. El Mohtar is also on the board of the National Society Security Fund in
Lebanon and has been actively involved in the UN disability convention process
attending the last many Ad Hoc meetings in New York.
Mr. El Mohtar spent his early career teaching mathematics and working in the business
world, but he has been dedicated to working on disability issues for over 20 years. He is
the founding member of several NGOs, including the Handicapped Services
Coordination Committee in Lebanon, and has served on the board or as a member of
numerous disability and rehabilitation NGOs, including the International Abilympics
Federation, Inclusion International and the Mediterranean Countries Committee for
Health and Physical Rehabilitation.
In addition to the RI EC members mentioned above, there are several other members who
are adding their expertise and commitment to the group. Lex Frieden, the current Chair of
the U.S. National Council on Disability, remains on the RI EC as the Past President after
serving four distinguished years as the RI President. The RI EC also includes: Gidion
Mandesi, a prominent Tanzanian lawyer; Mukhtar bin Mohamed bin Mussalam Al
Rawahi, head of the Omani Organization of Disabled Persons; Nareewan Chintakanond,
a disability leader based at the National Council on Social Welfare in Thailand; Benny
Wai-leung, a former Paralympian based at the Hong Kong Society for Rehabilitation;
Heidi Lindberg of RI Finland and senior staff member of the Finnish National
Association of the Disabled; Dr. Jiri Votava, a senior rehabilitation physician in the
Czech Republic; Victor Hugo Flores Higuera, head of the President's Office on the Status
of Disabled Persons in Mexico; Geraldo Nogueira, disability leader in Brazil; Marca
Bristo, excutive director of Access Living, a leading center for independent living in the
USA; Max Beck, head of RI Canada; Betty Dion of Canada, Chair of the RI Commission
on Technology and Accessibility (ICTA); Dr. Martin Grabois of the U.S., Chair of the RI
Commission on Health & Functioning; and Mark Webber of South Africa, Chair of the
RI Commission on Policy & Services.
For more information on RI and the EC contact the RI Secretariat at ri@riglobal.org or
visit the website: www.riglobal.org
Disability Rights Convention Needed to Counter
Discrimination
By Meg Burd, originally published January 28, 2005 in the Rocky Mountain Collegian
(© 2005 Rocky Mountain Collegian)
A special committee has been called at the United Nations this week to discuss the
protection of rights of a group of people who are often overlooked. While often
marginalized and sadly forgotten in the larger discussions of human rights, the more than
600 million people with disabilities worldwide must no longer find their basic rights
pushed to the side or ignored any more.
"We must attend to the needs of a segment of the world population which, in spite of
disability, gives us a lesson for living and overcoming adversities," Ambassador Luis
Gallegos Chiriboga of Ecuador told the U.N. at a recent session, and he is right.
For those of us challenging countries around the world and here at home to ensure basic
human rights, we must no longer neglect or forget persons with disabilities in our call for
proper treatment and dignity for all people.
Worldwide, persons with disabilities of all sorts face not only a variety of everyday
challenges, but also the horrific challenge of living in places in which their basic human
rights are often not protected or else blatantly violated by laws and practices.
Indeed, looking around the world (and even here at home) at some of the atrocious and
discriminatory laws proves why a stronger emphasis on ensuring the rights for the
disabled is needed so desperately.
The National Council on Disability, in a paper published for a conference in 2002,
reported a variety of scenarios in which discrimination against persons with disabilities
was systemic and legalized. In Thailand, for instance, the Council notes that the
Constitutional Court banned people with disabilities from becoming judicial officials. In
Honduras, laws prevent persons with disabilities from teaching. In Germany, after a court
awarded money to complainants who said sharing a hotel with disabled guests ruined
their holiday, hotels are now leery to book disabled travelers.
Amnesty International reported last year that in Albania, a Family Code amendment was
passed that barred marriage rights to people with certain mental or physical disabilities.
Under this law, people suffering from schizophrenia, manic-depression (bipolar disorder),
or congenital blood diseases (amongst other things) are not allowed to marry. This law
even extends to people suffering from HIV/AIDS. In order to marry, says Amnesty
International, medical certificates proving that potential spouses do not suffer from any of
the particular disabilities must be presented. In many places, voting rights are denied to
persons with disabilities, as are employment rights.
Beside denial of rights such as these, in many places persons with disabilities are
declared incompetent to take care of themselves by the law and shuttled off to inadequate
and often inhumane facilities to "keep them out of the way."
In Bulgaria, for instance, Irene Khan of Amnesty International found just such a situation,
in which residents were little more than prisoners, held in long, dank corridors with little
care. The rooms of disabled children were locked down, and they weren't even provided
with toys. The restrooms at one facility detailed by Khan had not been cleaned for a long
period of time, and indeed neither had any of the residents received hygienic treatment.
With laws regarding the rights of disabled persons as they are (particularly the mentally
disabled in Bulgaria) many of the people in the facility Khan visited had been
"abandoned by society with nothing to do and nothing to hope for... excluded from
society on a basis of a diagnosis which are questionable, founded on assumptions which
are outdated and seldom reassessed," Khan quotes a consulting psychiatrist as saying.
As America struggles to fulfill the promises made by the Americans with Disabilities
Act, which the National Council on Disabilities considers woefully slow and ill-defended
by law, we must work to ensure that the human rights of persons with disabilities are no
longer put on the backburner or ignored in the larger debate. Persons with disabilities
should not be made to suffer degrading treatment, discrimination, exclusion or any other
affront to their basic human dignity. As the U.N. committee meets on this important topic
this week, we should work to raise our voices and remind everyone that human rights for
disabled persons is an essential topic.
As Justin Dart said during the National Council of Disability's 2002 convention, "we
must give up business as usual and fight as if the lives of billions depended on it, because
they do."
Honoring a Disability Rights Pioneer: Ed Roberts' 504
Victory Speech
Editors' Note: Following is the text of a speech by Ed Roberts at the 504 sit-in victory
rally in San Francisco, April 30, 1977. We have chosen to reprint it in this issue of
DisabilityWorld because in March 2005 it will be 10 years since Ed died, and this speech
captures his spirit, his vision and his commitment to the disability rights movement that
was then in its infancy. The San Francisco sit-in, still the longest such action in a U.S.
federal building, was part of a national cross-disability protest to force the Jimmy Carter
administration to sign regulations to enable the enforcement of section 504 of the
Rehabilitation Act of 1973. The provision made it illegal for any federal agency, federal
contractor or other entity receiving public funds to discriminate against anyone "solely by
reason of ...handicap."
All Right!
It was just, what, three and a half weeks ago that we got here together to begin talking
about something that we knew that we could do. You know, we didn't come into this with
weakness. We came into this movement to show strength, to show what we really are.
Which is people who have learned, from people with disabilities, from being people
considered weak, from people being people who are discriminated against daily; we've
learned how to be strong, and we've demonstrated that to the people of this country.
We knew it. And now they know it. We have a long way to go. We talk about a long
journey. It's now been about 10 years since some of us have been struggling, and for
years before that. There are people that will be long remembered for their contributions
towards opening society; and you know, I think these next ten years together, and I don't
think we're going to get it all done overnight, but we have one fantastic start. 504 is going
to help us guarantee our own civil rights. And we have learned that through the struggle
we gain tremendous strength. We are much stronger than we were three and a half weeks
ago. I hope that not only will this record for a sit-in be in the Guinness Book of Records
for you all to show your grandchildren, but that you'll remember what you did here, what
we did together.
Winston Churchill once said, "Never have so few, done so much, for so many." And this
example, this example of people loving each other, committed to something that is right,
is one that I know I will always remember. And you know, there is nothing like building
a movement on success. We have never been defeated. You think about it. Whenever we
have brought ourselves together, whenever we have joined various disabilities together,
we find our strength. Our strength is in our unity. And our strength is in our
righteousness. Because this is a cause that we've all invested our life in.
We have to begin to think very clearly, that what we need to do is help raise the
consciousness of our fellow Americans with disabilities, to help them come out from
behind, from the back wards, from the institutions, from the places, the garbage heaps, of
our society. We have to stop the warehousing, the segregation, of our brothers and sisters.
We have a long way to go. But we have one giant step ahead.
Together we have achieved something that relatively few people achieve in their lives.
We have learned more than anything else, about each other, about how much we love
each other, and that commitment, that dedication to each other, will carry through the rest
of our lives.
We have begun to ensure a future for ourselves, and a future for the millions of young
people with disabilities, who I think will find a new world as they begin to grow up. Who
may not have to suffer the kinds of discrimination that we have suffered in our own lives.
But that if they do suffer it, they'll be strong and they'll fight back.
And that's the greatest example, that we, who are considered the weakest, the most
helpless people in our society, are the strongest, and will not tolerate segregation, will not
tolerate a society which sees us as less than whole people. But that we will together, with
our friends, will reshape the image that this society has of us.
We are no longer asking for charity. We are demanding our rights!
It's not unusual that a movement like this would have its real heart in this area. There are
many committed people in this area -- Berkeley, San Francisco, the Peninsula, all of
Northern California. People have come together and have shown that in our unity is our
strength; that in our division is our weakness; that we are going to see attempts to divide
us so that we can easily be conquered. But we will not allow that to happen.
I want to say to all of you that from the beginning I knew we could win this. And I didn't
see any of you waiver. We knew that we had set a course that we all were gonna follow.
We knew the only thing we could tolerate was victory.
We are victorious. We are strong. And we will march ahead together. And nothing will
stop our achieving equal opportunity, and the right to move about freely in this society.
We will storm the schools and open them up. We will be sure that each person with a
disability who has special needs has the money and the power to gain what they need to
move them back into the mainstream of society. And we will assure a future for the
millions of people who are not now disabled. You know, you come to think of it, that we
are assuring a future for a lot of people we don't know at all, and who don't know that
their future may be, very similar to ours.
I couldn't be prouder of us together. And I couldn't be happier. And I cannot think of a
better way to go into tomorrow, but with rededicating ourselves to the struggle that's
ahead, to enforce 504 Regulations, to open up more doors, to create choices for people,
not the choice of segregation.
I thank you. I join you. I celebrate with you. I rededicate myself to work with you, to
ensure the future.
A Backward Glance at the Best of 2004
This compilation is an effort of the DisabilityWorld staff to record some of the most
productive and creative efforts of the last year or 15 months.
Legislation
The 2005 Omnibus Appropriations legislation passed by the U.S. Congress in 2004 on
the Reconstruction of Iraq and Afghanistan, for the first time spelled out the commitment
to ensuring that new construction and major projects in those countries will be accessible
to people with disabilities. In February 2005 the U.S. State Department issued a public
statement that its disability policy would now be in effect agency-wide and several public
meetings are planned to discuss implementation. The legislation requires that the
Secretary of State and USAID each designate a disability advisor. The policy, first issued
in 1997 by then Secretary of State Madeleine Albright during the International
Leadership Forum for Women with Disabilities, is the result of more than a decade of
persevering work by international disability advocates.
New Media
Among all the new interactive CD Roms, Open Futures: Roles Models for Youth with
Disabilities is a standout. After meticulous research to identify and interview around 50
talented disabled individuals who are employed in a wide range of jobs and careers, some
very competent staff of InfoUse edited and presented all the information in an appealing
format, supported by video and audio clips. Open Futures starts from the assumption that
adolescents with disabilities are looking for the same type of career guidance other
adolescents are: role models, tips, frank questions and answers -and bundles this all up
into an enjoyable and believable package. It is refreshingly free of the usual
condescending "lessons" aimed at adolescents and of the tendentious jargon common to
the vocational rehab field. It also can be ordered with two associated videos aimed at
employers and disabled individuals, illuminating variations on the same theme of what to
expect from the world of work. Check it out: www.infouse.com
Conferences
It would be hard to beat the world class line up of disability expertise assembled for the
World Bank's second conference on disability and development held in Washington,
D.C. at Bank headquarters last December. The keynote was Amartya Sen, the Nobel
Prize winning economist, who made a clear case for factoring in the extra costs of living
with a disability. A particularly impressive panel was devoted to the intersection of AIDS
and disability in Africa, with stark reports from disability activists in South Africa,
Uganda and Ethiopia. More details about the conference and other World Bank disability
projects: www.worldbank.org/disability
From all reports (including one appearing in this issue of DisabilityWorld) the end of
year Universal Design conference held in everyone's favorite city by the sea, Rio de
Janeiro, also lived up to high expectations. Led by Brazil, participants representing
countries in the South played key roles in the conference. Check out the proceedings:
www.designfor21st.org/proceedings
Films & disability images
At the end of 2003 Station Agent with the remarkable actor, Peter Dinklage, set the bar
higher for integrating disability themes into a mainstream film. The quirky, humorous
buddy film managed to incorporate the daily realities of how some disabled people are
still treated in post-ADA America, while underscoring Dinklage's central role as the most
balanced character in the film. This may be a first - Dinklage is a first rate actor who has
a disability, something the mainstream casting directors have reportedly had difficulties
in locating...hoping to see a lot more of him.
In 2004 the competition includes Ray, which did not utilize a disabled actor, but neither
sidestepped nor exaggerated the factor of blindness in the life and career of Ray Charles.
We were not impressed with the portrayal of mental illness of Howard Hughes in The
Aviator , resorting mostly to a Hollywoodian mélange of odd and/or dangerous
behaviors.
Moscow's 2 nd international disability film festival , held last November, was by all
reports an extraordinary event and the credit goes to Perspektiva, a disability rights
advocacy group working to reduce physical and attitudinal barriers. Following the
Moscow event, now held every other year, Perspektiva has developed a successful
national media campaign, taking Festival winners to rural regions throughout Russia. In
each city, the mini-festival is used to raise public awareness about disability issues,
drawing large numbers of advocates, parents and allies of people with disabilities.
Human Rights Initiatives
Although it only rarely breaks into the mainstream news, there is a lot of dedicated and
largely unremunerated work going on over at the UN to craft the world's first
Convention on Human rights of people with disabilities. At the close of the 5th session of
the Ad Hoc Committee (reported elsewhere in this issue), delegates all paid tribute to the
leadership of Ambassador Luis Gallegos of Chile, who has shepherded the work from the
beginning and will now take up the post of Chile's Ambassador to Australia. The pace
can be excruciating as sometimes each word must be negotiated, but most delegates feel
that the efforts are paying off.
Books
In 2004 a book by DisabilityWorld reporter William Rowland of South Africa was
published: Nothing About Us Without Us: Inside the Disability Rights Movement of
South Africa. Containing a number of illustrations, DisabililtyWorld articles and other
material by Rowland, this is the first book about the disability rights movement in South
Africa. It is available for US$14.20 from the publisher: UNISA which will take credit
card orders by fax: 27 (12) 429-3449. It is also available in Braille and audio editions.
As many readers will know, the origin of the slogan, "Nothing About Us Without Us,"
has long been discussed since it was first used in the early 1980s by disability rights
groups. It is often attributed to Southern African disability rights groups but some South
Africans recall hearing it first from Eastern Europeans at disability rights conferences.
There is a Polish law of 1505 that translates into this slogan (meant to establish that the
King could not pass laws without going through the Sejm or Parliament) which has long
been used as a touchstone of democracy there, re-launched and well-publicized in the
early 1980s by the Solidarity movement of Polish laborers. It is possible that Eastern
European disability activists introduced this rallying cry to international meetings, where
it may have found particularly deep resonance in South Africa's fledgling movement to
include disability activism in the struggles against apartheid.
Whatever the origin and travel route of the slogan, this book by one of the earliest South
African disability rights activists is a unique documentation of a unique struggle,
resulting in the recognition of disability activism by Nelson Mandela's and subsequent
South African governments.
In Our Hearts We Were Giants by Yehuda Koren and Eilat Negev traces the
remarkable story of the Lilliput Troupe, a dwarf family's survival of the Holocaust.
Published in 2004 by Carroll & Graf Publishers, New York, this 305 page illustrated and
indexed book follows the forced migrations of the 10 member Ovitz family from
Transylvania to Auschwitz and their post-War moves to Holland and Israel. The heart of
the story is how the troupe survived Auschwitz under the double-edged "protection" of
Josef Mengele and details are provided through the memoirs of family members, but
primarily through interviews with the longest surviving member, Perla Ovitz. The book
greatly expands on the story first told in the award-winning documentary, "Liebe Perla,"
(Dear Pearl) co-funded by the governments of Israel and Germany.
Yemen: Disability Profile
By Majid Turmusani (Researcher specializing in disability and development issues.
Email: Turmusani@hotmail.com)
Disability profile in Yemen
There is no accurate information or studies on the situation of disabled people in Yemen,
just piecemeal and uncoordinated studies. In recent years, the government has given
attention to data management on disability for program planning and policy making. A
number of national surveys as a result have included some questions on disability. The
accuracy of the results have remained limited however due to using narrow definitions of
disability as well as other technical and logistical problems related to collecting specialist
information on disability.
For example the population, housing and establishments census of 1994 had showed a
proportion of disability at 0.54% with no difference between rural and urban areas (CSO,
1994). This is far from accurate and included only the severe cases of disability. The
National Poverty Survey (1999) showed a 17-18% of stunting among children less than 5
years of age with the majority of cases due to malnutrition (CSO, 1999). The Household
Budget Survey planned for 2005 makes reference to disabled people but definition is
rather limited and leaves those with learning disability, psychological/psychiatric, and
multiple disabilities excluded (CSO, 2004). The issue of definition remains the key factor
responsible for variations in the results of surveys and studies.
Impairments and disabilities in Yemen are due to road accidents, hereditary issues,
accidents from construction work and firearms, poor medical infrastructure and medical
mistakes, iodine and vitamin A deficiency, poor maternal health related to malnutrition,
and other environmental factors including epidemics, natural disasters, pollution, and
inaccessible environments. Further, maternal health is notably affected by Qat 1
consumption. According to The World Bank (1999), Qat severely reduces the appetite for
women and leaves pregnant mothers without food for considerable times, causing
nutritional problems for mother and child. There is a lack of awareness raising strategies
on the prevention of disability in Yemen. This leads to new cases of preventable
impairments on a daily basis 2.
In Yemen as in other developing societies, poverty and disability are closely linked in a
vicious circle (DAA/UNESCO, 1995; DFID, 2000; Stienstra, et al 2002). Poverty among
disabled people surveyed for the Social Welfare Fund in 2002 reached 23% (SWF, 2002;
MLSA, 2003). Breaking the yoke of poverty will help overcome problems related to
disability. However, improving the economic conditions of the poor is not the only
solution to deal with the issue of poverty and disability. There are other social, political
and cultural measures that need to be put in place while dealing with poverty and
disability (Turmusani, 2003). To achieve equality and social justice as promoted in
Millennium Development Goal in Arab countries - MDG (MDG, 2003), the system of
class has to be dismantled so that minority groups such as 'Akhdam' and disabled people
become integrated into the mainstream. Until these social and cultural disabling barriers
(represented by class, gender or disabilities) are removed, little social justice can be
achieved in Yemen. Therefore development initiatives should focus on strategies to
change social habits and behavior.
The Social Safety Nets created to alleviate poverty at the rate of 27% (National Poverty
Survey, 1999) in Yemen has the potential to serve disabled people. Currently there are
three specialist safety nets serving disabled people including the Social Welfare Fund
(SWF) (providing financial assistance to the needy including disabled people); the Social
Fund for Development (SFD) (a capacity building organisation); and the Fund for the
Welfare of Disabled (Disability Fund - DF) which provides funding for various disability
rehabilitation projects. Other existing safety nets have also the potential to serve disabled
people and this includes t he Public Works Programme (create employment and income
opportunities for low skill workers); the National Poverty Alleviation and Employment
Generation Programme; the National Programme for Productive Families and the Small
Scale Credit Units. Apart from the Fund for the Welfare of Disabled, all safety nets suffer
from their budgetary limitations, including their dependency upon conditional foreign
funding.
In conclusion, it is clear that markets alone can't deliver growth as argued earlier and this
is more evident in the case of poverty and disability more than any other field. Both
disability and poverty are cross-cutting issues. They should be tackled in a coordinated
manner using a package of social, cultural and political measures together with economic
reforms. All stakeholders should be involved in the process including disabled people and
their organizations.
Issues and challenges
Rehabilitation policies in Yemen are spread over a number of legal documents issued by
the Ministry of Legal and Parliamentary Affairs (MLPA). The Law for the Welfare of
Disabled - Law Number 2 for the year 2002 remains the principal document. Other Laws
referring to disabled people include: Child Law - Number 45/2002 (Articles 1115 - 123),
Law for Social Welfare - Law Number 3/1996 including the establishment of The
Welfare Fund, and Law Number 2/2002 for the establishment of the Fund for the Welfare
and Rehabilitation of Disabled People. A major criticism of these laws is their limiting
medical definitions, the absence of a coordination mechanism set up for the
implementation of these laws, and priority treatment given to war disabled persons.
Despite all these laws, the rights of disabled people including disabled Yemeni to access
services and provisions remain restricted by many institutional disabling barriers
including the built environment in line with the social model of disability (Oliver and
Barnes, 1998). Accessibility issues in fact are prerequisites to education, employment and
participation in community life (UN, 1993, Rapley, 2003). Accessibility does not only
include modification to buildings, but also necessary is changes in attitudes, an accessible
legal system and accessible information and communication strategy that reaches all
disabled people.
Strategies for the prevention of disability in Yemen remained largely limited to
vaccinations. Little attention is given to reducing malnutrition among mothers and
children, the reduction of Iodine and vitamin A deficiency, or road accidents, fire arms,
constructions, medical mistakes, and diseases. The overwhelming majority of people
acquiring impairments remain without services. The lack of an effective early
intervention system means that impairments often develop into permanent disabilities,
especially in rural areas where there is nearly total absence of disability support services
including health education and necessary rehabilitation. Above all, an awareness strategy
for changing attitudes towards the needs and abilities of disabled people is missing.
While Yemen is not a war zone country, land mines are still causing a number of
impairments, especially among the rural population. According to the Yemeni Land Mine
Action Centre, there have been 103 new injuries during the last 3 months throughout the
country (YMAC, 2003). Existing orthopedic workshops are only located in big cities and
this leaves the majority population out of rehabilitation services. People who receive
artificial limbs have difficulty maintaining such devices due to distance in reaching the
nearest workshop. Existing workshops produce mainly lower and upper limbs.
Wheelchair production is limited and there is no agency producing wheelchairs for
children or for sports. Moreover, splints, crutches or special seats for CP children are all
missing. Overall, the physical rehabilitation provision in Yemen including physiotherapy
services is generally weak and needs serious attention.
It is notable that education for disabled people in Yemen is generally segregated in
institutions some of which are residential with long waiting lists. This is despite the
policy for 'Education for All' adopted recently by Ministry of Education (ME, 2002).
Overall, there are far more disabled students who can't access education 3 including
higher education. Specialized preschool services for children with all kind of disabilities
hardly exist apart from some individual urban based examples. For a rural society like
Yemen with three quarters of its population living in scattered villages, Coleridge (2004)
recommend the utilization of Community Based Rehabilitation (CBR) to serving disabled
people not only in education but in other areas of community development.
While sign language is notably developed in Yemen with a dictionary already in place,
speech therapy is missing whether for deaf people, people who have had accidents,
strokes or for CP and other disabled people. Similarly, psychiatric facilities are absent
apart from a handful of centers characterized by poor services. Services for elderly
population are totally absent despite the notable increase in life expectancy in Yemen
from 46 years in 1990 to 60 years in 2001 (UN, 2001).
Education and training are keys to assisting disabled Yemeni to become economically
independent and active members in society. However, support services for young
disabled people including vocational training and community apprenticeship is very
limited. When they exist they concentrate on traditional handcrafts - sewing and knitting
for girls and loom knitting for deaf and physically disabled boys. According to disability
Law No 2/2002, five percent of the total workforce should be reserved for people with
disabilities. In reality however, few employers comply with this quota system. The Social
Fund for Development however - which has a special project for disabled people - has
managed to employ a number of disabled women and men in its regional network, some
of whom serve as disability officers themselves (SFD, 2002). This model of trusting in
the ability of disabled people to lead their own development deserves study and support.
The capacity of Disabled People's Organizations to lead disability movement in Yemen is
a major concern considering the potential role DPO's can play in empowering disabled
constituents. There is a national union of disabled people (MLSA, 2001) already existing,
but with no regional network or budget for operation. The capacity of the union to
represent the interests of and to advocate the rights of disabled people is not always clear.
Government strategy
The Government of Yemen has shown high political commitment towards disability
issues, but their strategy relied heavily on legislation or special safety nets funds as seen
earlier. The Ministry of Social Affairs and Labor has taken the lead responsibility of
serving disabled people in Yemen including issuing legislation - MSAL has a unit for
CBR. Two other ministries provide services for disabled people including: the Ministry
of Public Health and Planning (MoPHP) through its vaccination program, orthopedic
support and physiotherapy services (MPH, 2000); and the Ministry of Education (ME)
through its policy on 'Education for All' (ME, 2002).
Given the limited capacity of government structure to deal with disability issues, the
Government in recent years has assigned much responsibility regarding the practical
needs of disabled people to special safety net funds. These funds were created to reduce
the yoke of poverty in the country and they include SFD, the Social Welfare Fund and
Disability Fund as mentioned earlier. Moreover, the government has also delegated some
responsibility for serving disabled people to the civil society.
This collaborative approach to development adopted by the Government goes in line with
the participatory approach used in this study 4 on disability and poverty in Yemen, fully
supported by both the Government and the World Bank. The World Bank has long
recognized the importance of democratic process for sustainable economic development
in Yemen. There has been much investment made in supporting the development of civil
society and grass root action guided by the international framework of Human Rights
(The World Bank, 2003).
Conclusion and recommendations
The overwhelming majority of disabled Yemeni, especially women 5, remain without
services, particularly in rural areas. Government support is very limited, and recently
established DPO's are too weak to bridge this gap of services as these DPOs themselves
require capacity building. Disabled people especially in the regions had expectations of
support by the disabled union but receive none. They also have expectations from the
government, and lack faith in it at the same time. While there is political commitment at
government level, lack of enforcement mechanisms have left laws ineffective. The
International community provides some support to the disability sector but this could be
enhanced much more considering the existing needs and the size of development
cooperation in Yemen. The top priorities identified by disabled people were vocational
training, employment, and financial welfare support.
Considering the poor infrastructure of the country and the very limited capacity at all
levels, it is necessary to conduct further investigations into the capacity of disability
sector in Yemen and the potential for the development of coordination mechanism for
existing disability partners, both government and civil society including DPO's. A
comprehensive strategy on disability would clarify the roles and responsibilities of each
party which will greatly help meeting the needs of disabled Yemeni.
Issues to be considered in such a strategy may include awareness raising campaigns on
disability prevention and early intervention; as well as positive disability terminology,
human rights approach to disability; and inter-sectoral coordination are all important for
the development of disability sector in Yemen. Equally important is the provision of
rehabilitation services including vocational training, education, and employment and how
these help in reduction of poverty and disability. There is a need to develop the capacity
to manage data following a disability research approach.
The cross cutting nature of disability requires inter-agency coordinated effort for
effective service delivery. For this reason there is clear justification for setting up of
national coordination body with leading role given to disabled people organizations
supported by MSAL who should oversee disability business in Yemen. The three fold
government mandate of coordination, regulation and supervision of services including
inter-ministerial coordination should be balanced, enhanced and strengthened at MSAL.
Disabled people organizations play a central role in their own empowerment process.
Civil society including DPO's should be represented in all activities related to policy
formation, program planning, implementation, and monitoring. In brief, it is important to
mainstream disability into development national programs.
A strategy for poverty alleviation should take note of building human capacity to
effectively use scarce resources in the community and not only building economic
capacity. CBR approach to using local skills and resources is an important example paper and simple orthopedic technology. Poverty reduction strategies should go hand in
hand with friendly safety nets measures to include disabled clients in their target
beneficiaries.
The high government political commitment towards disability has raised the profile of
disabled people issues on public agenda. However, there is obvious need for a national
strategy on disability with a mechanism for coordination 6 so that minority groups are
reached.
Notes
1. This first stage research has been conducted under the World Bank Study on Poverty
and Disability in Yemen during March and April 2004. The full Study will be completed
in further date. Special thanks to Iqbal Quar - Team Leader of Yemeni Strategy for
Children and Youth, The World bank, DC for her comments on an earlier draft of this
paper.
Qat is considered as a stimulant substance that has dependency effect (MPD, MA, and
FAO, 2002).
2. One family visited had 6 disabled boys and girls who have muscular wasting. Two
more children are also diagnosed with the same disease but no symptoms manifest until
now. The lack of services left this disabled family out of services including education,
vocational training or job opportunities. The welfare fund has just recently decided to
give 2000 YR / month (approx 10 - 11 US$) as financial support for this family.
3. The prevalent poverty in rural areas had led many parents to keep their children,
especially girls at home to assist in family economy - farming, fetching water and woods,
etc.
4. This first stage study gives a framework that will set the scene for a further in-depth
investigation on disability and poverty in Yemen. In so doing, a brief situational analysis
of disabled people in Yemen is being presented here based on discussion with
stakeholders including disabled Yemenis. Disability partners in Yemen have identified a
number of strategic issues that need to be looked at and addressed within Yemen strategy
for children and youth.
Data for this study including demographic data have been gathered through a consultation
process with disability stakeholders including those at the governorate level - this
included all line ministries, INGO's, donors community, disability NGO's including
disabled union, and disabled people and their families. A total of 50 organizations were
visited and more than 150 people took part in 5 FGD including one large group
discussion in Akhdam community. Both individual and focus group discussion were
employed for data collection. Desk review has also been conducted and qualitative
analysis has been used. Future study may focus on gathering primary and in-depth data
from participants through both individual interviews as well as focus group discussions.
Research team included researcher himself and two assistants from MSAL and SFD one
of whom was a woman.
5. Until recently that there was special attention given to disabled women. Previously,
disabled females were left behind and family given little priority for their education,
training or rehabilitation. The Challenge Association for the Care of the Disabled is an
advocacy initiative that support disabled women in Yemen. Based on a number of local
surveys, the Women National Committee for the implementation of CEDAW reports
113,000 disabled people in Yemen, 36,852 of who are women. The illiteracy rate among
disabled women is said to be at 95% and the number of disabled girls served in rehab
centers is just over 1000 in 1999. Elderly females are particularly suffering more
discrimination (WNC, 1999).
6. Based on consultations with various partners in Yemen including GoY and civil
society it was obvious that the current Poverty Reduction Strategy Paper (PRSP, 2003)
lacks the endorsement of many stakeholders who either don't know about it or are not
convinced that they can play a role in it. This explains the very slow progress in the
implementation of PRSP in Yemen. Since it came into force two years ago, there was
hardly any effort at the national level to set up coordination mechanism to introduce it to
stakeholders and to monitor its implementation.
Bibliography
Coleridge, P (2004) The Social Fund for Development: A Review of its Program in
Disability. Internal Report, Jan-March 2004.
CSO (1994) Final Results of the Population, Housing and Establishments' Census.
Central Statistical Organization (CSO) and Ministry of Planning and Development,
Sana'a.
CSO (1999) Final Results of the Population, Housing and Establishment Census, General
Report. Central Statistical Organization (CSO) and Ministry of Planning and
Development, Sana'a.
CSO (1999) The National Poverty Survey. Central Statistical Organization (CSO) and
Ministry of Planning and Development, Sana'a.
CSO (2004) Household Budget Survey 2005 - Final Questionnaire. Central Statistical
Organization (CSO) and Ministry of Planning and Development, Sana'a.
DAA/UNISCO (1995) Overcoming Obstacles to the Integrating of Disabled People,
Disability Awareness in Action (DAA), London.
DFID (2000) Disability, Poverty and Development. Department for International
Development (DFID), London.
MDG (2003) The Millennium Development Goal in Arab Countries: Towards 2015
Achievements and Aspirations. UNDP, New York
ME (2002) Education for All Strategy, internal document. Ministry of Education, Sana'a.
MLPA (2002) Child Rights Law No 45 for 2002. Ministry of Legal and Parliamentary
Affairs (MLPA), Sana'a.
MLPA (2003) Labor Law No 5 for 1995. Ministry of Legal and Parliamentary Affairs
(MLPA), Sana'a.
MLPA (2003) Law for the Social Welfare Fund for 1996. Ministry of Legal and
Parliamentary Affairs (MLPA), Sana'a.
MLPA (2002) Law for the Welfare and Rehabilitation of Disabled No 61 for 1999.
Ministry of Legal and Parliamentary Affairs (MLPA), Sana'a.
MLPA (2003) Law of Social Welfare No 31 for 1996. Ministry of Legal and
Parliamentary Affairs (MLPA), Sana'a.
MPD, MA, and FAO (2002) The National Conference on Qat: Towards the Formulation
of a Comprehensive Qat Policy in the Republic of Yemen - Technical Field Study.
Ministry of Planning and Development (MPD), Ministry of Agriculture (MA), and UN
Food and Agriculture Organization (FAO), Sana'a.
MPH (2000) Health Sector Reform in the Republic of Yemen: Strategy for Reform.
Ministry of Public Health and Planning (MPHP), Sana'a.
MSAL (2001) Charter for the National Union of Yemeni Disabled Organizations.
Ministry of Social Affairs and Labour (MSAL), Sana'a.
Oliver, M. and Barnes, C. (1998), Disabled People and Social Policy: From Exclusion to
Inclusion, Longman, London.
PRSP (2003) The Republic of Yemen's Poverty Reduction Strategy Paper 2003 - 2005.
Yemen News Agency Printing Press (Saba), Sana'a.
Rapley, C (2003) Reconsidering the disability Dimension in Development Cooperation
Activities; building national capacities for full participation and equality. Regional
Workshop towards a Comprehensive and Integral International Convention on Protection
and Promotion of the Rights and Dignity of Persons with Disabilities. October 14-17,
UNESCAP, Bangkok.
SFD (2002) The Annual Report of the Social Fund for Development (SFD). SFD, Sana'a.
Stienstra, D, Fricke, Y, and D'Aubin, A (2002) Baseline Assessment: Inclusion and
Disability in World Bank Activities. Canadian Centre on Disability Studies.
SWF (2002) Social Welfare Funds' Poverty Survey 2002-2003. Social Welfare Fund
(SWF), Sana'a.
Turmusani, M (2003) Disabled People and Economic Needs in the Developing World:
political perspective from Jordan. Ashgate, Aldershot.
UN (2001) Yemen Common Country Assessment: United Nations in Yemen. UN,
Sana'a.
WNC (1999) National Report on the Implementation Level of the Convention on
Elimination of All Forms of Discrimination Against Women. Women National
Committee (WNC), Sana'a.
World Bank (1999) Toward a virtuous circle: a nutrition review of the Middle East and
North Africa. Human Development Group Middle East and North Africa Region, T he
World Bank, Washington, D.C.
World Bank (2003) Yemen National Strategy for Children and Youth. Issue Paper, The
World Bank, DC.
YMAP (2003) Yemen Mine Action Program (YMAP), Sana'a.
International News Briefly
Compiled by Jennifer Geagan (jennifer@wid.org), World Institute on Disability
Disabled Peoples' International issues special bulletin on the Tsunami
DPI produced an extra edition of its e-news bulletin to share information about what
people can do for those that were affected by the earthquake and tsunami in Asia and in
Africa that took place on December 26, 2004. Eleven countries were affected by the
disaster: Malaysia, Myanmar, Seychelles, Tanzania, Kenya, Somalia, Maldives, Thailand,
India, Indonesia, and Sri Lanka. The disaster's death toll is nearing 160,000 people, and
according to one UN official, that total could surpass 200,000 people before long. Kevin
Kennedy, the director of the Coordination and Response Division of the UN Office for
the Coordination of Humanitarian Affairs, says that the relief effort is making great
strides, but the urgent needs of many victims have not yet been met. Not only are people
with pre-existing disabilities affected by a lack of access to aid, but more people are
becoming disabled because of this disaster. DPI wants to make sure that people with
disabilities are considered in all relief efforts. To find out more about the aftermath and
about what one can do to help out during this crisis, visit
http://www.dpi.org/en/resources/current_news/01-11-05_tsunami.htm.
Disabled persons must be included in the design, implementation and evaluation of
policies, programs that affect their lives
UN Secretary-General Kofi Annan in his message on International Day of Disabled
Persons, 3 December 2004, said that persons with disabilities are the best experts on how
to remove barriers to their participation, and must be included in the design,
implementation and evaluation of policies and programs that affect their lives.The full
text of his message reads is posted on DPI's website at
http://www.dpi.org/en/resources/current_news/12-10-04_annan.htm
Amnesty International: Human rights imperative for mental health reforms
The only way to ensure respect for human rights in mental health systems and in-patient
facilities is through effective enforcement of international human rights standards,
principally through rights-based national legislation, Amnesty International said on the
eve of the World Health Organization's (WHO) European Ministerial Conference on
Mental Health in Helsinki, Finland, on 12-15 January 2005. In Europe, one fifth of
children and adolescents experience developmental, emotional or behavioral problems,
and one in eight have a mental disorder. Many of these disorders are recurrent or chronic.
Mental disorders affect one person in four in their lifetime, and can be found in 10 per
cent of the adult population. To read the Amnesty International report online, visit
http://news.amnesty.org/index/ENGIOR400012005 .
Afghanistan: About 250,000 landmine victims struggle to make a life
Despite having one of the highest numbers of landmine victims in the world, Afghanistan
has been slow to reintegrate its disabled war victims. The figures are staggering. The
country has more than a million people living with disabilities, according to the Afghan
Ministry of Martyrs and Disabled (MOMD) and a quarter of them - at least 250,000 - are
victims of landmines and unexploded ordnance (UXOs). The number is rising, with at
least 40 people still falling victim to mines each month, as people return to villages that
used to be on front lines. But this figure has now fallen considerably compared to the last
few years when 300-400 people became victims of UXOs and mines every month. To
read the IRIN News report online, visit
http://www.plusnews.org/report.asp?ReportID=44269&SelectRegion=Central_Asia
Netherlands' hospital euthanizes babies
Raising the stakes in an excruciating ethical debate, a hospital in the Netherlands - the
first nation to permit euthanasia - recently proposed guidelines for mercy killings of
terminally ill newborns, and then made a startling revelation: It has already begun
carrying out such procedures in a handful of cases and reporting them to the government.
The announcement by the Groningen Academic Hospital came amid a growing
discussion in Holland on whether to legalize euthanasia on people incapable of deciding
for themselves whether they want to end their lives - a prospect viewed with horror by
euthanasia opponents and as a natural evolution by advocates. To read the entire AP
report online, visit
http://www.miami.com/mld/miamiherald/news/world/10304249.htm?1c
Dutch told of child euthanasia
Dutch doctors have reported 22 mercy killings of terminally ill babies since 1997,
according to a new study. None of the doctors involved were charged, although
euthanasia for children is illegal in the Netherlands. The report, in the Dutch Journal of
Medicine, is the first detailed examination of child euthanasia. The study's authors want
to address under-reporting of the practice and encourage doctors to report cases without
fear of prosecution. The cases involved babies with extreme spina bifida, a disabling birth
defect. The study showed that prosecutors had decided not to file charges as long as four
unofficial rules were met. To read the BBC article online, visit
http://news.bbc.co.uk/2/hi/europe/4198993.stm .
Church of England Changes Stance on Euthanasia
The Church of England took a radical step towards backing 'mercy killing' of terminally
ill patients last night after one of its leading authorities said that there was a 'strong
compassionate case' for voluntary euthanasia. Canon Professor Robin Gill, a chief adviser
to Rowan Williams, the Archbishop of Canterbury, said people should not be prosecuted
for helping dying relatives who are in pain end their lives. Last week Gill was sent by
Williams to give evidence to a parliamentary committee investigating euthanasia. Gill's
stance marks a major shift by the Church of England and was welcomed by groups
campaigning for a change in the law to allow for people to be helped to die under strictly
limited circumstances. To read the report in the The Observer - UK, visit
http://observer.guardian.co.uk/uk_news/story/0,6903,1391582,00.html .
BBC reports on Euthanasia comment by medical ethics expert fuels controversy
A medical ethics expert has said she would consider euthanasia if she became a
"nuisance" in old age, sparking anger among charities for older people. Baroness Mary
Warnock told the Sunday Times: "One of the things that would motivate me is I couldn't
bear hanging on and being such a burden on people." While her stance was applauded by
pro-euthanasia activists, Age Concern labelled the remarks "outrageous." A
spokeswoman for the charity said the elderly should not be seen as a burden. The
baroness, who is 80 years old, said she would not go into a retirement home, saying they
are a "terrible waste of money that my family could use far better." To read the BBC
article online, visit http://news.bbc.co.uk/1/hi/uk/4090463.stm .
Independent Living
Applying the Minority Perspective to Disability in
Afghanistan
By Majid Turmusani (Turmasani@hotmail.com). The author specializes in disability and
development issues with policy research experience in Afghanistan.
Ethnic background
Historically and until recently, many societies have been designed to meet the needs of
the majority population. The needs of minority groups including those with disabilities as
a result have been excluded or poorly addressed. This institutional exclusion is not only
in terms of services, but can also be seen in policy and program planning. This is
especially true for disabled people who belong to minority ethnic groups (Asch, 2001).
In Afghanistan, racial and ethnic difference is an issue which has contributed to the
escalation of conflict in the country and widened the difference between various sections
of society. There are at least 6 major ethnic groups in the country with a majority being
Pushton. These groups have their own language, and culture. This makes differences
obvious even under the same religion of Islam - there are variations of Islam such as
Sunni and Shiite and recent years had seen conflict between them. This is particularly the
case between the largely Pushton followers of Sunni Islam and the mainly Hazara Shiite.
While the geographic variation between rural and urban living contribute to this
difference, language and religion remain two determinants of group identity in
Afghanistan.
Difference naturally, generates an opportunity for learning and for growth. In a
democratic environment where the human rights of all people are respected, difference
always is a healthy sign for potential development. For some individuals and groups
however, difference may generate fear and fear may generate more difference
unfortunately. Unless these differences are resolved in a healthy manner - through
communication, they will escalate and cause rifts and gaps between groups such as in
Afghanistan. Difference however, is not only confined to expressed values and beliefs but
also manifest in the way people look, physical materialist appearance and physical status,
and which group people belong to, etc. The core issue of difference is the exclusion of
those perceived as different from the norm.
Disability and exclusion
The difference of disability is often perceived as a ground for exclusion from society
especially the economy and this is also evident in Afghan society. Oliver and Barnes
(1998) argue that much of the exclusion of disabled people has been supported by
institutional practices. The fact that disability was considered a charity issue, few
provisions were made for disabled people. Available provisions therefore did not give
disabled people the rights to accessing education, employment etc, but instead was left to
the good will of society to provide disability services voluntarily and not according to the
law.
There are certain sectors which experience a higher level of exclusion among disabled
people, intensifying or multiplying the level of exclusion based on ethnic minority origin.
This is evident in Afghanistan and includes people with severe intellectual - mental and
psychiatric - or multiple disabilities, elderly people, rural disabled, those displaced by
violence, the war disabled and disabled refugees. Children with disabilities have
traditionally been seen as less worthy of social investment - access to education for
example - than other children. Women with disabilities often suffer double
discrimination. Minority groups, including racial and ethnic minorities, are similarly
disadvantaged.
The invisibility of disabled Afghans means exclusion from all spheres of socio economic
and cultural life as well as exclusion from the democratic process in its various levels. A
lack of participation in the political process can result in policy being formed without the
active involvement of groups likely to be affected by its outcome. It can also lead to
passivity and dependence which serve to perpetuate the invisibility of disabled people.
Invisibility often means that the universal right of equal opportunity is simply not applied
equally to disabled people, contrary to what is outlined as recommended by the UN
Standard Rules and the current UN draft disability convention.
While disabled people have been largely excluded from the mainstream in Afghanistan,
progress has been made in understanding disability issues and providing specialized
services including CBR programs mainly for physically disabled people. Notably, there
has been greater advocacy for disabled peoples' rights and gradual development of skilled
professionals working in this sector. For example, the recently completed Comprehensive
National Disability Policy has been developed in close collaboration with the disabled
community.
There are three groups of disabled people in Afghanistan which experience higher levels
of discrimination and exclusion than others: children with disabilities, disabled women,
and elderly disabled people, to be further discussed below.
Children with Disabilities
There are no reliable national data available on the incidence of disability among children
or among the population in general in Afghanistan. However, the U.S. Centre for Disease
Control (CDC) and UNICEF conducted a disability survey in 2003 and they found that
1% of Afghan children are disabled (CDC/UNICEF, 2003). It is believed however that
there are more children with disabilities than 1% in Afghanistan. Landmines alone have
disabled thousands of children who often fetch water, collect wood, tend the flocks, or
play in the fields unaware of the danger buried under their feet. The weak preventative
health services have led to a high incidence of disabling conditions such as polio and
tuberculosis. The high level of birth complications and under-nourishment amongst girls
and women, and inadequate medical care, also gives rise to impairments such as cerebral
palsy in newborns. According to WHO, the infant mortality rate is 165 per 1000 live
births (WHO, 2002). Malnutrition, poverty, and road accidents contribute to a higher rate
of disability among children.
Exclusion of disabled children from services is evident in Afghanistan regardless of their
ethnic minority backgrounds. For example, The Civic Voluntary Group (GVC), an Italian
NGO, conducted a study on disabled children in education in the city of Kabul in 2003
and found that only 1.11% of total students were with disabilities. In rural areas where
ethnic groups are more evident due to the tribal nature of Afghan society, exclusion of
disabled children is clear due to total absent of services in such places. Until recently,
exclusion of girls from education was a common practice, but this is slowly changing.
However, the lack of female professionals continues to exclude many girls from
receiving services due to cultural restriction on female/male relations. This is especially
true for rehabilitation and medical services where women's bodies may only rarely be
examined or treated by male professionals. The International Convention on the
Elimination of All Forms of Racial Discrimination recognizes that racial discrimination
can itself cause disability. For example, racial groups may be restricted or denied access
to services and this may escalate impairments into disability. Given the gravity of the
situation of disadvantaged minority groups in Afghanistan such as Hazarah for example,
there are a number of INGO's who focus their work on serving these groups.
Nowadays, there are little opportunities for children to play and practice normal
childhood life activities. There is a rather dangerous phenomenon in Afghanistan
concerning street children. In big cities, especially in the capital Kabul, there are
hundreds of kids who took to the street as home and as a place for earning a living,
mainly from begging - many of these children are disabled. The fact that war has left
many children without fathers or without family altogether, meant that these children
have to survive on the street especially in the absence of an effective education and
welfare support system.
Moreover, the war has brought the risk of displacement of countless number of families
and individuals. Many families of disabled children have moved to urban centers in
search of security and job opportunities especially after the ban of poppy (illegal drugs)
production in their rural areas or when losing the breadwinner. While, urban living
helped many children get an education, it exposes them to other forms of city dangers
such as road accidents and increased pollution, homelessness and gang habits, and street
children life.
The majority of Afghan children lost members of their family in the war and all of them
had been through the war and the resulting aftermath. It is believed that children have
been traumatized by the war, especially if this involves the loss of family members.
While this is the situation, there are still nearly no psychological and counseling services
for these children at all. It is believed by both the international community and the
government that the traditional family unit has mechanisms to cope with such mental
health problems. However, this has not been properly debated, researched or
documented.
Based on the above analysis, growing up as a disabled child in Afghanistan is a
challenging process that is full of dangers and exploitations as cited above. Although
Afghanistan has ratified the CRC, there are no special laws to promote and protect the
rights of disabled children which are prescribed by Article 23 of the international
Convention on the Rights of the Child (CRC) unfortunately.
Disabled women
Although the situation of women in Afghanistan is improving, there is still much to be
done regarding women's rights and the status of women in society. The traditional gender
role that confines women to the role of housewives and deprives them of education and
employment is still common, especially in rural areas. The lack of sufficient female rehab
workers has also affected the use of rehab services by girls and women as indicated
earlier. Female early marriage, the lack of mother and child health care and the high
fertility rate for women are all factors that work against the progress of women in
Afghanistan.
When women are disabled they are more vulnerable to marginalisation and exclusion.
Disabled women are often deprived of education altogether as well as other life
opportunities including work, participation in political debate and denied the right to
establish their own families. There is lack of awareness regarding women with
disabilities and reproductive health needs - more often disabled women are regarded as
sexless (Nagata, 2003).
To raise the profile of women in the country, the Transitional Government of Afghanistan
has established a separate ministry for women issues. Despite this ministry, gender and
women issues have not been mainstreamed into other government programs until now.
Moreover, disability issues among women have not been taken into account in the
programs of this ministry either. There is an obvious lack of a gender and disability
strategy for this ministry as well as throughout the country.
As far as we can ascertain, there are no studies on the situation of disabled women in
Afghanistan. The working group on disabled women which was set up for drafting
recommendations for the national disability policy has debated the issues of disabled
women in terms of needs and priorities. The needs of disabled women have been
identified to include: education including higher education, health and medical care,
participation in all spheres of life including public events with media coverage,
involvement in policy making process and employment of disabled women in all key
ministries. These were guided by the international framework of CEDAW, the Biwako
Millennium Framework (BMF) and the new draft disability convention.
This working group comprised representatives of all stakeholders working with women
including disabled women themselves. They recommended a number of strategies for
meeting the above needs including mainstreaming disability and gender, setting up an
office responsible for the employment and advocacy of disabled women's rights, setting
up modern training programs as well as reviving old techniques of home based training,
promoting accessibility standards including accessible housing system, policy monitoring
should be carried out with participation of disabled women, and supporting disabled
women against violence including psychological support and counseling services. The
latter is interesting to note as both the government and the international community
regularly question the value of psychological services. Yet, we find disabled women
calling for psychological support among their priorities for independent living.
Elderly disabled people
There are indicators showing the aging population in Afghanistan and the urgency for
special programs to cater for their needs. The fact that many men were killed in the war
meant that widows were left to age and die naturally. Moreover, as the war ended, it is
expected than the mortality rate for both women and men will rise above the low life
expectancy of 45 years ( UNICEF, 2003 ). This means more people will live to old age
and experience old age impairments such as hearing and vision problems as well as other
mobility problems. Indeed, aging and disability will develop a closer association.
Traditionally, disability services reached primarily those disabled by war, usually young
or adult males. Although, these war disabled persons have grown up now, until this
moment, disability programs have not considered services for the elderly population apart
from limited orthopedic services. This is especially true for older women who require
interventions different from the population of younger women who need an emphasis on
maternity care. Recently, however, disability programs have paid attention to children's
issues as a priority in terms of education and physical rehabilitation. Overall, the elderly
disabled population remains very under-researched and underserved, deserving the
attention of planners, service providers and policy makers.
Cross cutting issues
Trauma and psychological support : The long years of war resulted in not only an
increased death toll, but also bereaved, stressed, and traumatized society who requires
much psychological support. The Taliban practices of punishments in public including
amputation and stoning, has also been another source of trauma and distress, especially
among children and women. Psychosomatic illness is quite common among women due
to stress and depression. The social and economic capacity of many families has been
significantly reduced due to the loss of breadwinners or other family members. State
welfare support to families of martyrs and disabled people are nearly nonexistent. Many
families are being left with war or landmine disabled members who need rehabilitation
services including counseling. The mental health situation of women, children, and
refugees, are particularly poor within this war-torn country. Although, there is a
substantial proportion of drug users and dealers who also have mental health problems,
there is hardly any service for this group either.
The low profile of mental health issues in Afghanistan is mainly due to negative public
perception and stigma of those who are mentally ill. There is stigma towards mental
illness, often perceived as being punishment of sin. Many families conceal the presence
of mentally ill members to protect the family reputation and marriage prospects for other
siblings. Mentally ill people are therefore often kept away from sight and remain an
invisible group among the already excluded disabled population. They are as a result
prevented from education, vocational training and other community services.
The national health plan adopted by the Ministry of Health had no specific reference to
the problems of people with mental health impairments. The Interim Health Strategy
2002-2003 and the Basic Package for Health Services for Afghanistan, 2003 have both
identified mental health issues as a challenge for post conflict development of health
sector in the country. However, neither identified mental health issues as a priority and
therefore, no plans for specific programs were proposed. It is therefore, perhaps no
surprise to find a lack of mental health facilities and mental health professionals in the
country.
Accessibility : An effective inclusion strategy for the largely excluded disabled people in
Afghanistan requires comprehensive rehabilitation program including psychological
support system. This will be possible only within a barrier-free environment that keeps
universal design ideals in mind. It is not enough to make buildings accessible if there is
no accessible transport system to get people to such places. Equally, it is important for
disabled people to have accessible housing where they can live independently. Accessible
environment can be useful not only to disabled people but to everybody including elderly
population, pregnant women, children, and other groups.
Central to accessibility standards is an information and communication system that
covers all types of disability, gender, geographic areas, and all age groups. This system
may include training programs and provision of specialist devices when necessary.
Self help groups : Disabled people know best about their priorities and their organizations
have a strategic advantage to advocate their rights and influence public decisions
concerning their issues (Kasnitz, 2001). Currently there are a number of informal selfhelp groups of disabled people in Afghanistan including one group for disabled women NADWA - National Association of Disabled Women in Afghanistan. These groups are
independent from the government and have the potential to foster disability movement in
the future. However, training, awareness raising, financial support, and collaboration with
other stakeholders especially the government is all necessary for the development of this
sector. DPI Asia and Pacific have conducted leadership training for these groups in
Afghanistan last year and communication continues between DPI and some of these
groups.
There is an obvious need for grass roots action to support the future disability movement
in Afghanistan. The working group on self-help groups for planning the national
disability policy has identified the needs of disabled people to include different self help
groups according to types of disability, financial support for such groups, friendly and
cooperative government relations, and supporting the development of self-help groups
into recognized organizations including umbrella organizations.
Conclusion
The fact that disabled Afghans were a hidden group meant that society knew very little
about their situation: their needs and aspiration, and more importantly about their abilities
and their rights. It can be argued that empowering minority disabled groups therefore,
necessitate not only giving power to disabled people over their lives, but also making
knowledge about disability available to the public including policy makers and the
disabled community themselves, hence making disability a visible issue. This will create
opportunity for debate over disability issues and present a chance for change. The
participation of disabled people and their organization in this debate is fundamental and
goes in line with the Afghan Comprehensive National Disability Policy 2003 as well as in
line with UN Standard Rules, BMF and the recently drafted disability convention.
Despite the fact that the recently endorsed National Constitution of Afghanistan made all
citizens equal before the law in terms of their rights and responsibilities, disabled people
continue to be deprived of services on many grounds and this is often justified by lack of
resources. Until now national plans took little notice to integrate disability concerns into
their respective programs. The Comprehensive National Disability Policy has emphasized
the value of coordinated and collaborative effort between all stakeholders in dealing with
disability issues including those pertaining to minority invisible groups.
References
Afghan Constitution (2003) Draft National Constitution of Afghanistan.
http://www.constitution-afg.com/draft_const.htm
BMF (2003) Biwako Millennium Framework for Action Towards an Inclusive, Barrier
Free and Rights Based Society for Persons with Disabilities in Asia and the Pacific
(BMF). United Nations Economic and Social Council, Otsu City, Shiga, Japan.
CEDAW (1979) The Convention on the Elimination of all Forms of Discrimination
against Women.
Civic Voluntary Group (2003) The Situation of Disabled Children in the Education
System in Afghanistan: a study for the city of Kabul. Kabul: GVC.
CRC (1989) The United Nations Convention on the Right of the Child.
ICERD (1965) The International Convention on the Elimination of All Forms of Racial
Discrimination.
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.
Ministry of Public Health (2003) Interim health strategy 2002-2003.
Ministry of Public Health (2003) A basic package of health services for Afghanistan.
MMD (2003) The Comprehensive National Disability Policy. URL:
www.disabilityafghanistan.org
Nagata, K (2003) Gender and Disability in the Arab Region: the challenges in the New
Millennium. Asia Pacific Disability Rehabilitation Journal, Vol 14, No 1, 2003.
Oliver, M. and Barnes, C. (1998), Disabled People and Social Policy: From Exclusion to
Inclusion, Longman, London.
UNICEF (2003) The State of the Worlds Children.
WHO (2002) Afghanistan Health Sector Profile 2002: a contribution to the debate on
health sector recovery. Geneva.
Meeting Future Challenges of Disability in Aging
Societies
By Lex Frieden, Chairperson, National Council on Disability, Senior Vice President, The
Insititute for Rehabilitation and Research, Director, ILRU Program
In the early part of the 21 st century, societies around the world are beginning to feel the
impact of the demographic anomaly which in the middle part of the 20 th century was
called the Baby Boom. During the Baby Boom, the world population expanded
exponentially. As a result, the population of people in the world today who are nearing
retirement age is larger than any other single population group.
The demographic implications of this mean that an extraordinary number of people
nearing the end stage of life will be a part of the population. Because of the natural
correlation between aging and disability, most of those people will have at least a shortterm disability before the end of their lives and more than half of them may actually have
a long-term disability or chronic condition which lasts more than six months during some
period before the end of their lives.
The impact of having millions more people with disabilities in society than we have ever
had before is immeasurable. Certainly, the approach to caring for older people with
disabilities will be forced to change radically in order to accommodate the large numbers
anticipated. While many older persons with chronic conditions are now cared for in
nursing homes and other sorts of institutions including boarding homes and assisted
living facilities, the demand for assistance by older people with needs for care will soon
exceed the capacity to provide such care using the current paradigm.
The only foreseeable solution to meeting the long-term care needs of persons with
disabilities during the Baby Boom aging wave is to concentrate on the development of
comprehensive, community-based provider systems, including home care, and
congregate living schemes. Societies will be challenged with the need to develop
infrastructures and means to support expanded care needs and demands. In addition to the
economic infeasibility of meeting these needs in institutional settings, the practical
barriers to doing so would be prohibitive, and the very wishes of the people to be served
would be contradicted.
In the Western world, particularly in North America and Europe, and in parts of Asia and
the Pacific, the Baby Boom generation has been responsible for extreme technological
and social progress. People from this generation generally have been conditioned to be
individually responsible for their actions and for any care which they or their families
may need. In exchange for bearing these kinds of responsibilities, societies have granted
individual members extraordinary autonomy and freedom to make decisions affecting
their own lives.
People have become accustomed to asserting themselves within competitive democracies,
and they have grown to expect having control over their own lives. This control extends
to making decisions about where they live, how they are transported, whom they
associate with, how they expend their personal resources, what they eat, and when they
go to bed. In a future scenario organized to care for these individuals in institutional
settings, they would have control over none of these decisions. Such a scenario would be
unacceptable to them.
The new paradigm in long term care for people with disabilities and older adults with
needs for daily assistance is that of widely available, reliable, community-based systems
of care designed to enable people to live in their own homes and be as independent as
possible.
The infrastructure required to facilitate such systems is not generally available and must
be quickly developed. Further, for the most part, the economic means to support such
systems have not been developed. Priorities must be set by governments to identify the
means and build the infrastructures necessary to support the systems of service and care
required to meet the impending needs of those people in the Baby Boom Generation.
Adapted from a paper to be presented in Auckland, NZ, March 22, 2005, at Bold
Perspectives, an international conference.
Disability rights take off with proposed EU air
passengers' Regulation
The European Commission will present tomorrow a landmark proposal for a Regulation
on the rights of air passengers with disabilities:
• European Commission Vice-President, Jacques Barrot, leads the way introducing
Europe's first-ever disability-specific legislation.
• The European Disability Forum welcomes the European Commission Regulation,
ensuring that all Europeans will be able to enjoy their right to travel and move freely
across Europe.
Brussels, 15 February 2004 - The new proposal for a Regulation on the rights of
passengers with reduced mobility when travelling by air will be officially presented
tomorrow by Vice-President of the European Commission Jacques Barrot, during the
traditional EC Midday Press Conference at the Berlaymont building in Brussels.
For the European Disability Forum (EDF), representing 50 million people with
disabilities in Europe and ensuring that their interests are taken into account in all EU
policies and legislation, the new proposal for a Regulation will mean a significant change
in the lives of disabled people, stopping air companies and airports from continuing to
discriminate.
On regular basis, the European Disability Forum receives information about disabled
people being refused booking or the right to travel on a flight due to their disability.
Customers with disabilities are often charged for the assistance they require; they
experience poor levels of assistance and numerous infrastructural barriers in airports and
on aircrafts.
"Recently we were informed about the case of a woman with no arms, fully mobile and
ambulant, that was obliged by a major French air company to disembark from an aircraft
before take-off on the pretext that she was unable to do up her own seat belt , said Yannis
Vardakastanis, President of the European Disability Forum. "The case of a disabled
passenger who was obliged to prove to a Finnish air company that his cerebral palsy was
not contagious to the crew and to other passengers has also been reported, among many
other examples" he added.
The Regulation will be directly applicable in all Member States. It will establish concrete
rules and obligations for the protection of and assistance to people with disabilities,
preventing airlines from refusing to accept passengers because of their disability and
ensuring high quality assistance at airports for customers with disabilities.
The European Disability Forum now calls on the European Parliament and the Council of
the European Union to work together in the best interests of disabled passengers, cooperating to ensure speedy adoption and implementation of a the Regulation.
For press queries, please contact: Nora Bednarski, EDF Policy Officer - Tel: + 32 2 282
46 05; e-mail: nora.bednarski@edf-feph.org or Helena González-Sancho Bodero, EDF
Communication Officer: Tel: +32-2-282.46.04 E-mail: communication@edf-feph.org
Interaction of Future Time Orientation & Spinal Cord
Injury
Project Summary provided by Mark Richards, ILRU
Effects of an Acquired Disability on an Individual's Orientation to the Future: 'Do
Reactions of Adaptation to Disability Influence the Fluctuation of Future Time
Orientation Among Individuals with Spinal Cord Injuries?'
Future time orientation (FTO), the degree of engagement in and concern about the future,
is believed to have significant influence on a person's thoughts and behavior. In an article
about her research findings, Erin Martz of the University of Missouri suggests that
alteration in one's orientation to the future may result from experiencing a traumatic
event. For this reason, she concludes that future time orientation is an important factor for
rehabilitation counselors to consider when working with individuals with disabilities to
develop vocational goals.
Martz hypothesizes that shock, anxiety, denial, depression, internalized anger, and
externalized hostility related to experiencing a traumatic event will be negatively related
to future time orientation and that acknowledgment and adjustment will be positively
related to future time orientation. The research study involved a population of 317
veterans and civilians with spinal cord injuries. Participants completed a future timeorientation scale instrument, the reactions to impairment and disability inventory for
measuring adaptation, as well as four questions from the American Injury Association
Impairment Scale which measured severity of disability. Results showed that after
controlling for specific demographic and disability-related variables, the eight reactions
of adaptation to disability (shock, anxiety, denial, depression, internalized anger,
externalized hostility, acknowledgment, and adjustment) explained 24 percent of the
variance in FTO. Out of the eight reactions of adaptation to disability, shock, depression,
and acknowledgment were found to significantly predict variance in FTO among
individuals with SCI.
Believing that facilitation of greater FTO in disabled individuals may be integral to
achievement of long-term, career-focused planning that is emphasized in rehabilitation
counseling, Martz suggests that rehabilitation counselors should:
• Identify when individuals seem uninterested in planning for the
• future and recognize that this may be based on a truncated sense of future.
• Encourage a future orientation outlook by addressing individual's
• reactions to the existence of a disability.
• Refer individuals to therapy if shock and depression are identified,
•
•
in order to prevent the effects on FTO.
Encourage individuals to consider how their disability may affect their goals and
future plans.
For in-depth information on this study, see Martz, E. (2004). Do Reactions of Adaptation
to Disability Influence the Fluctuation of Future Time Orientation Among Individuals
with Spinal Cord Injuries? Rehabilitation Counseling Bulletin, 47(2), 8695.
New Publications from Mobility International USA
Mobility International USA (MIUSA) is an organization that empowers people with
disabilities around the world through international exchange and international
development. MIUSA also manages the National Clearinghouse on Disability and
Exchange (NCDE), sponsored by the Bureau of Educational and Cultural Affairs of the
United States Department of State.Through the NCDE, MIUSA provides information and
resources for people with disabilities to learn about opportunities for international
exchange, including study abroad, volunteer service, research and teaching programs and
helps international exchange programs increase their number of disabled participants.The
following are new publications from the NCDE for international exchange organizations
and people with disabilities interested in international opportunities.
A Practice of Yes! Working with Overseas Partners to Include Students with
Disabilities
This new, free publication from Mobility International USA/National Clearinghouse on
Disability and Exchange is a handy, quick-reference guide, designed for exchange
professionals working with overseas partners to place students with disabilities in
exchange programs, and includes common concernsvoiced by overseas partners and real
world answers from experienced exchange professoinals. Topics addressed in this
publication include: assessing personal perceptions and institutional policies; barriers to
participation by students with disabilities; reaching partner agreements; and best
practices. Download Practice of Yes! now in PDF format at
http://www.miusa.org/publications/freeresources. Available in alternate formats on
request.
New International Career Publication Available Online for People with Disabilities
Released on the International Day of Disabled Persons, a new online resource from
Mobility International USA/National Clearinghouse on Disability and Exchange titled
Preparing for an International Career: Pathways for People with Disabilities
encourages young adults with international interests to explore careers in the international
affairs, exchange and development fields. It highlights different types of international
occupations, job prospects, tips to prepare for an international career, insights from role
models and emerging leaders with disabilities in these fields, and the international
exchange and fellowship programs they participated in to get them where they are today.
Download Preparing for an International Career in PDF format at
http://www.miusa.org/publications/freeresources to find information on many activities
one can participate in as stepping stones to an international career! Available in alternate
formats on request.
New Travel Publication Available! Survival Strategies for Going Abroad: A Guide
for People with Disabilities
Navigating the Great Wall in China.Staying healthy in Japan. Taking your animal
companion to Costa Rica.All reasonable issues to contend with as a world traveler.As a
disabled world traveler, these and many other issues take on a more pressing relevance. A
new publication from Mobility International USA/National Clearinghouse on Disability
and Exchange, this how -to travel book especially for people with disabilities, Survival
Strategies for Going Abroad: A Guide for People with Disabilities , focuses on academic,
volunteer, short-term work and other types of cross-cultural exchange for a crossdisability audience.It compiles new tips and stories from twenty individuals with
disabilities who have studied in Australia, consulted in Japan, taught in Jamaica,
volunteered in Russia, and more. It provides people with disabilities information,
resources and guidance on pursuing international exchange opportunities. It also
addresses disability-related aspects of the international exchange process such as
choosing a program, applying, preparing for the trip, adjusting to a new country and
returning home. Survival Strategies for Going Abroad can be ordered online at
http://www.miusa.org/publications/books. Available in alternate formats on request.
Rights and Responsibilities: A Guide to National and International Disabilityrelated Laws for International Exchange Organizations and Participants
This newly updated 125-page booklet includes helpful information on disability rights
law for international exchange advisors and participants. It explores different insights on
the interpretation of the ADA and its impact on international educational exchange
policy, and also looks at non-discrimination laws in other countries, shares stories and
perspectives from students withdisabilities and disability service advisors, and provides
case studies to show how various laws may be interpreted in international exchange
settings. Download Rights and Responsibilities now in PDF format at
http://www.miusa.org/publications/freeresources. Available in alternate formats on
request.
News about Vacation Home Exchange, Independent
Living Institute
Since 1998 our Accessible Home Exchange Service has been very popular getting the
most traffic of the whole ILI site www.independentliving.org, which presently attracts a
total of 1,200 unique visitors a day. Read about a successful swap here.
Given the present lack of access features in the mainstream home exchange services there
is a place for our service. But many more could enjoy the service, if we offered database
features such as password-protected editing, automatic email messages asking members
to confirm or remove their listings, digital pictures of homes and access features, etc.
Some of these features would also reduce our administrative work. But to upgrade the
service costs money which we do not have.
We need your advice and feedback:
a. Is the service important enough to our visitors to warrant a (for us sizeable)
investment in database programming?
b. Are users willing to contribute to the costs?
c. Shall we ask for donations or charge an annual subscription fee, and if so, how much?
Please, go to the poll and give us your view in the Vacation Home Exchange Discussion
Forum.
Sincerely,
Adolf Ratzka
Independent Living Briefly
Compiled by Jennifer Geagan (jennifer@wid.org), World Institute on Disability
Disability Social Security benefits could face cuts
Social Security disability benefits may not be safe from the across-the-board cuts that are
likely in President Bush's proposal to allow personal investment accounts. Retirement
and disability benefits are calculated using the same formula, so if future promised
retirement benefits are cut, then disability benefits also would be reduced -- unless the
program is separated. That also raises big questions about how investment accounts
would be structured for disabled people, especially if they get injured at a young age or
are dependent on a parent. Disabled beneficiaries typically work less and need benefits
sooner, so the accounts would not provide enough income to these people. Read the
entire AP report online at the San Jose Mercury-News.
A Bloody Mess: decades after reform, Britain envies the US Social Security system
A conservative government sweeps to power for a second term. It views its victory as a
mandate to slash the role of the state. In its first term, this policy objective was met by
cutting taxes for the wealthy. Its top priority for its second term is tackling what it views
as an enduring vestige of socialism: its system of social insurance for the elderly.
Declaring the current program unaffordable in 50 years' time, the administration proposes
the privatization of a portion of old-age benefits. In exchange for giving up some future
benefits, workers would get a tax rebate to put into an investment account to save for
their own retirement. Read the article online at prospect.org.
Russian Government Passes Unpopular Social Benefit Reform Bill: a brief report by
Perspektiva
In August, despite protests all over the country, the Russian government signed into law a
bill that will replace benefits such as subsidized transportation and medicine with cash
payments, dismantling remnants of the Soviet welfare state and affecting millions of
vulnerable citizens, including war veterans, the disabled and pensioners. The legislation
is part of the unpopular and potentially painful reforms President Vladimir Putin has
promised to tackle during his second term. Advocates of the government-backed bill say
substituting cash for benefits will make aid more accurately targeted arguing, for
example, that public transportation is scarce in rural areas and supplies of subsidized
medicines are short. They also say it will put people less at the mercy of the country's
laborious bureaucracy. However, opponents of the bill which affects more than 30
million of the neediest Russians, more than one-fifth of the population, say the proposed
payments, which start at $5 a month, will be eaten away quickly by inflation and will not
be paid in full by regional authorities. They also say some privileges, such as job
guarantees for the disabled, are not eligible for any monetary compensation. In July
thousands of Russians rallied to speak out against this legislation, unfortunately, this did
not stop the Parliament from passing it.
Thousands Protest Cuts in Social Benefits Across Russia
A thousand retired people tried to block the road to a Moscow airport Saturday as 10,000
others jammed the avenues in President Vladimir Putin's hometown of St. Petersburg to
voice their anger over a law that stripped them of some key welfare benefits. It was the
largest show of discontent since the Kremlin leader took power nearly five years ago. The
protests were triggered by the January 1 law that gives retirees, the disabled and war
veterans cash stipends instead of free benefits such as public transportation and medicine.
Protesters charge that the payments don't match the benefits they are meant to replace.
Read the entire AP online at Yahoo.
Access & Technology
European Union and Transport
Brussels, 11 February 2005 - "Mobility is essential to the full integration and
participation of disabled people in society" concluded Vice-President and Commissioner
for Transport, Jacques Barrot, at a very positive meeting of the yesterday afternoon with a
delegation from the European Disability Forum.
The delegation which included Carlotta Besozzi (EDF Director), Bruno Gaurier (Conseil
national français des personnes handicapées) and Nora Bednarski (EDF Policy Officer)
raised the following:
• Proposal for a European Regulation on the rights of air passengers with reduced
mobility which Vice-President Barrot confirmed will be published next week: "We
are very pleased, said Carlotta Besozzi, that the Vice-President stressed the
importance of this Regulation in ensuring that disabled people will no longer face
discrimination in air travel."
•
Proposal for a Regulation on the rights of rail passengers as well as public service
requirements and the award of public service contracts in urban transport: Access to
this modes of transport is essential to the social inclusion of disabled people and
facilitates use of transport by all members of the population.
The necessity of launching the process for the adoption of a new European Directive that
will protect disabled people from discrimination in all fields of life, including transport.
The Commissioner has demonstrated an open attitude to disability issues, affirmed
Carlotta Besozzi, and this excellent meeting gives us much hope and reinforces our
willingness to collaborate with the European Commission, which has confirmed its
commitment to a Europe where disabled people no longer experience discrimination.
For more information contact: Nora Bednarski, EDF Policy Officer, Tel: + 32 2 282 46
05, e-mail: nora.bednarski@edf-feph.org. For general press queries: Helena GonzálezSancho, EDF Communication Officer: Tel: +32-2-282.46.04. E-mail:
communication@edf-feph.org
The European Disability Forum (EDF) is the European umbrella organisation
representing the interests of 50 million disabled citizens in Europe. EDF membership
includes national umbrella organisations of disabled people from all EU/EEA countries,
as well as European NGOs representing the different types of disabilities. The mission of
the European Disability Forum is to ensure disabled people full access to fundamental
and human rights through their active involvement in policy development and
implementation in Europe.
Helena González-Sancho Bodero
Communication and Press Officer / Responsable de Communication et Presse
European Disability Forum / Forum européen des personnes handicapées
39-41, Rue du Commerce
1000 Brussels
Tel: + 32 (0) 2 282 46 04
Fax:+ 32 (0) 2 282 46 09
Mail: communication@edf-feph.org
Web: www.edf-feph.org
21 Individuals, Organizations & Governments Win
Universal Design Awards
January 6, 2005 - BOSTON, MA - Adaptive Environments, the Boston based,
international nonprofit organi-zation dedicated to researching, gathering and promoting
the most current ideas and information on Human-Centered Design from around the
world, has just held its third very successful international Conference on Universal
Design in Rio de Janeiro.
Called "Designing for the 21st Century III," this extraordinary conference brought
together over 350 thought leaders from more than 30 nations to exchange knowledge,
best practices and the latest advances on Human-Centered/Universal Design. Focused on
the user experience, participants representing many of the world's leading organizations,
academic institutions, governments and corporations convened to share exciting new
information, explore the best ways to move the Universal Design agenda forward and to
help establish international goals for the coming years.
"We are thrilled with the incredible array of leaders from around the world who attended
this year's interna-tional conference," says Valerie Fletcher, Conference Co-Chair and
Executive Director of the confer-ence convener, Adaptive Environments. "Never before
have we had such a diverse and influential group of people so willing to share their
wisdom and their experiences. All of us at Adaptive Environments are especially pleased
that this conference provided a remarkable opportunity to recognize many of the people
and organizations who have led the way for Human-Centered/Universal Design advances
throughout the past 25 years."
This year, Adaptive Environments was honored to present the 2004 Ron Mace Designing
for the 21st Century Awards - named in memory of the "father" of Universal Design - to
21 deserving individuals and organizations who have made extraordinary contributions to
the field of Human-Centered/Universal Design.
The 2004 Ron Mace Designing for the 21st Century Award recipients:
Leslie Young
Director of Design at the Center for Universal Design at North Carolina State University
Ms. Young was a key collaborative partner with Ron Mace beginning in the 1970s and
has made substantial contributions to both universal design's literature and multi-media
resources.
Marcelo P. Guimaraes
Professor of Architecture at the UFMG, Federal University of Minas Gerais, Brazil and
Director of ADAPTSE Laboratory for Design Research, Education & Outreach as related
to an Inclusive Society
Professor Guimaraes introduced universal design to Brasil in 1991 and mounted a
national campaign pro-moting a priority on accessibility and universal design to design
and construction professionals.
The Center for Universal Design
College of Design at North Carolina State University
The Center was founded by Ron Mace in 1989 as the Center for Accessible Housing that
became the Center for Universal Design in 1994. The Center has been an invaluable
information source for the US and international movements.
Ed Steinfeld
Professor of Architecture and Founder and Director of the Inclusive Design and
Environmental Access (IDEA) Center in the School of Architecture and Planning at the
University of Buffalo
For over 30 years Mr. Steinfeld has been a key engine driving the knowledge behind
accessible design practice and teaching. His contribution to both vision and knowledge
are unrivalled.
Hubert Froyen
Professor of Architecture and initiator of the Belgian Universal Design Education Project
Mr. Froyen has exhibited leadership in his outstanding contributions to the European
Institute on Design and Disability (EIDD) and to the evolving vision of the Council of
Europe toward an EU-wide curriculum for the occupations working on the built
environment.
The Institute Of Design And Disability (IDD) in Ireland
The Institute is honored for its successful convening and conducting of the Barcelona
Project that brought together 97 local governments committed to inclusive practices in
policies, services and the built environ-ment. It was the highest success rate of any
European nation.
Ricardo Gomes
Chair, Design and Industry Department, San Francisco State University, Chairperson for
the 2004 Student Design Competition at the Designing for the 21st Century III
Conference
Mr. Gomes has demonstrated unmatched leadership and inspiration in promoting
universal design to multi-cultural communities and the majority world.
International Association For Universal Design (IAUD), Japan
IAUD was founded in 2002 following the international universal design conference in
Yokahama and has achieved a stunning level of participation from the highest levels of
society. Prince Tomohito is their Patron and 145 of the world's most successful
corporations are active members of IAUD, creating an extraordinary and unrivalled
stimulus to mainstreaming universal design.
Inclusive Design And Environmental Access (IDEA) Center
School of Architecture, University of Buffalo at the State University of New York
Since 1984, IDEA has generated a substantial portion of the knowledge base underlying
the practice and teaching of accessible and universal design worldwide.
Sen Inc., and Principals Miyake Yoshisuke and Fusayo Asano
Sen Inc. has been a leader in setting exceptional standards and guidelines for Universal
Landscape Design for the extraordinary caliber of their firm's work and generous
commitment to disseminating their knowledge.
Jim Mueller
Chairperson, Industrial Design Society of America, Universal Design Professional
Interest Section
Mr. Mueller has sustained an extraordinarily productive, influential and generous
commitment to universal design for over 20 years, steadily adding fresh insights and tools
of practice to the field.
Francesc Aragall
President of the Design For All Foundation, based in Barcelona
Mr. Aragall successfully initiated European-wide movements that are systematically
leading to a more inclu-sive society. His unique leadership in both government and
business initiatives demonstrates both his keen commitment and understanding of the
importance of integrating design-for-all into stable infrastructure.
The Norwegian Government
Led by the Ministry of the Environment in collaboration with the Ministry of Health and
Social Affairs, the Norwegian Government has initiated and sustained an unprecedented
and still unmatched national systems approach to Universal Design and have generously
shared their strategies and reflections with the world community.
Singanapalli Balaram
Principal Designer and Senior Professor at the National Institute of Design and the Head
of the Interdisciplinary Design Studies and Chairperson of Knowledge Management
Centre, India
Mr. Balaram continues to use his insight and passion to promote inclusive design as a
pertinent and valu-able framework for design in the majority nations where he challenges
majority world designers to avoid the short-sightedness of the industrialized nations.
Centro De Vida Independente Do Rio De Janeiro (CVI-Rio)
CVI-Rio was the first independent living center in Latin America to embrace design as a
key to social inclusion from its earliest years and its countless contributions to both
public education and inclusiveurban design.
Jorge Falcato Simoes
Architect, Lisbon, Portugal
Mr. Simoes is honored for his twenty years of advocacy and commitment to strategic
partnerships through-out the City of Lisbon and for his contributions toward promoting
and educating about the state of the art of universal design at the urban scale.
Andrew Walker
Architect and founder of the Environmental Access Program at the Architectural
Association in London and is currently access consultant to the City of London
Mr. Walker is an outspoken critic of bad and disabling design for his unyielding design
advocacy, commit-ment to the vital role of user/experts and his savvy contribution to
inclusive design in historic buildings.
Schindler Elevators
Schindler Elevators is the world's leader in manufacturing vertical and horizontal access,
is a multinational corporation headquartered in Switzerland that created and generously
supported a groundbreaking student design competition in 2004 with a call to 79 EU
schools of architecture to submit designs reflective of Design for All that attracted 497
entrants from 72 schools.
The Once Foundation
An initiative of ONCE, the Spanish Organization for the Blind
The Foundations helps procure employment for people with disabilities and has to date
achieved accessibility in 53,000 workplaces and improved accessibility in cities, transport
and new technology with an investment of 350 million euros.
Edison Passafaro
Ex. Director, Comissao Permanente de Acessibilidade, Municipal Government, Sao
Paulo, Brazil Through his extraordinary leadership, Mr. Passafaro has created a national
model of an empowered munici-pal agency with responsibility for promoting and
implementing universal design at the urban scale for the largest city in Latin America.
Leslie Kanes Weisman
Professor and former Associate Dean, School of Architecture at New Jersey Institute of
Technology
Ms. Weisman is one of the world's most foremost educator and spokesperson for
universal design and a leader in articulating the connection between universal design and
other social justice movements.
Adaptive Environments (AE) is a Boston based, international nonprofit organization
dedicated to researching, gathering and promoting the most current ideas and information
on Human-Centered/Universal Design from around the world. Starting with insight from
"user/experts" and anticipating the range of individual differences, AE explores
innovative design solutions that enhance the experiences of people of all ages and
abilities. AE's projects and initiatives balance expertise in formal requirements for
accessibility with best practices in Human-Centered/Universal Design. AE is the
convener of the Designing for the 21st Century International Conferences on Universal
Design and is home to The Institute for Human-Centered Design.
Latin Americans Adopt Rio Charter for Universal
Design
Having met in Rio de Janeiro, Brazil, on December 12, 2004, in the International
Conference on Universal Design, "Designing for the 21 st Century", as women and men
from various countries in Latin America, including professionals, representatives of
NGOs and various sectors of civil society, universities, employees of government
institutions, and international and multilateral agencies, we hereby agree to the following
declaration:
1. The purpose of Universal Design is to serve needs and make possible social
participation and access to goods and services by the widest possible range of users,
contributing to both the inclusion of persons who have been prevented from
interacting in society and to their development. Examples of such groups include:
poor persons, persons marginalized for reasons of culture, race, or ethnicity, persons
with different types of disabilities, very obese persons and pregnant women, very
tall or very short persons, including children, and all those who for different reasons
have been excluded from social participation.
2. We conceive of Universal Design as generating accessible environments, services,
programs, and technologies that are equitably, safely, and autonomously usable by
all individuals - to the widest extent possible - without having to be specifically
adapted or readapted, based on the seven underlying principles, as follows:
• Equitable Use (for persons with diverse abilities);
• Flexibility in Use (by persons with a wide range of preferences and abilities);
• Simple and Intuitive (easy to understand);
• Perceptible Information (communicates necessary information effectively)
• Tolerance for Error (minimizes hazards of unintended actions);
• Low Physical Effort; and
• Size and Space for Approach and Use.
3. We acknowledge the value of the emerging concept of Inclusive Development ,
which attempts to expand the vision of development, recognizes diversity as a
fundamental aspect in the process of socioeconomic and human development,
claims a contribution by each human being to the development process, and rather
than implementing isolated policies and actions, promotes an integrated strategy
benefiting persons and society as a whole. Inclusive Development is an effective
tool for overcoming the world's prevailing social exclusion and thus for achieving
progress in eradicating poverty.
4. We conceive of Sustainable Human Development as a productive way of
understanding social policies, considering the links between economic growth,
equitable distribution of its benefits, and living in harmony with the environment.
5. We see that poverty and social exclusion affect millions of people worldwide,
prevent human development and a decent life with quality - and that in Latin
America and the Caribbean this situation affects over half of the population. We are
also convinced that exclusion and poverty, together with inequality, diseases,
insecurity, environmental pollution and degradation, and inadequate design are
public hazards affecting many people and threatening everyone.
6. Within the prevailing context of development based on exclusion, we pose the
following challenges:
• How to apply the principles of Universal Design when there are people whose main
concern is not "tomorrow", but the uncertainty as to their next meal ... or who lack
housing and the most basic health care?
• How to make Universal Design principles consistent with the fact that for the
majority of the world the concepts of "basic standards", "building codes", and
"regulations" are non-existent?
• In this situation, what real meaning is there in such services as "the bathroom", "the
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kitchen", "the lobby", "the ramp", "the lighting", or "the acoustics"?
And especially, how to add quality of life by applying Universal Design?
We emphasize that the current application of inadequate design to programs,
services, and infrastructure generates inaccessibility and perpetuates conditions of
exclusion for the future. We find it unacceptable that public resources continue to be
used to construct any kind of barrier.
We agree that Universal Design should become an indispensable component in
policies and actions to promote development, in order for it to be truly inclusive and
to effectively contribute to the reduction of poverty in the world.
We also agree that in order to make progress towards Universal Design for
Sustainable and Inclusive Development , all new actions will require the
following:
be planned with a balance between legal, human-rights, economic, technological,
and local cultural issues;
meet the community's real needs;
include participation by stakeholders;
incorporate Universal Design criteria in order to prevent investments from
generating extra costs for adaptations needed in the future;
apply locally available materials and technologies at the lowest possible cost;
plan for maintenance with local means; and
provide adequate training to allow increasingly extensive application of Universal
Design.
We are convinced that in order for Universal Design to become an instrument at the
service of Inclusive Development, it is necessary that all stakeholders in these issues
(states and governments, private sector, civil society, civil society organizations,
universities, professionals, and international and regional agencies) play active roles,
in keeping with the following lines of action:
Governments should make efforts to achieve legal instruments for Universal Design
to be applied permanently and as a cross-cutting component of national development
plans and public policies.
The private sector should be attracted to apply Universal Design to products and
services, and the theme should become a public interest matter.
Universities should promote Universal Design for training the professions related to
this concept, fostering research that allows the expansion, application, and
development of Universal Design.
Professionals directly related to Universal Design should furnish technical
guidelines in order to achieve its more effective and efficient application, focused on
local development and social inclusion.
The organizations currently most aware of the need for Universal Design should
contribute to spreading the concept to other sectors of civil society and play an
active role in social vigilance in order to make on-going progress in accessibility and
inclusion through its effective application.
International and regional agencies should make progress in the legal framework
with the support of international and regional technical standards and guidelines
promoting the sustainable application of Universal Design at the service of Inclusive
Development.
•
Multilateral lending agencies should make Universal Design a development issue
and promote its advancement, practical application, research, and dissemination with
economic resources and adopt it as a basic standard for designing projects and as a
requirement for the approval of loans to countries.
11. We feel that all efforts and actions in this direction will be stronger and more
effective to the extent that we move towards a common agenda for Universal Design
and Inclusive Development and build alliances and partnerships between the
different sectors and stakeholders. Yet it is still necessary to create networks to
promote these issues, to contribute to their spread and constructive debate, and to
empower the various efforts.
12. Finally, we hereby state that we are deeply convinced that if we work to build a
world guided by the principles of Universal Design and Inclusive Development, it
will be a better, more peaceful, more inhabitable, and more equitable world and
certainly one with better quality of life.
Rio de Janeiro, December 12, 2004.
Universal Design for Disabled People Draws
International Support
Report on International Conference on Universal Design, "Designing for the 21st
Century", December 7 - 11, 2004, Rio de Janeiro, Brazil
By Deborah Kaplan, specialist in Universal Design, Deborah Kaplan Consulting
(dk@deborahkaplan.com)
The brochure for this innovative, international conference states, "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."
Living up to diverse expectations and agendas
With such an ambitious description, this conference managed to live up to many different
expectations and agendas. In-depth pre-conference sessions provided an opportunity for
complex subjects to be explored and explained completely. A variety of workshops and
plenary sessions covered a wide breadth of topics with presenters from across the globe.
Pre-conference "charettes" were organized for participants to spend a portion of a day in
an intensive session, many in the local Rio community, during the pre-conference period,
followed by two working sessions during the Core Conference along with a final
presentation. The conference brought together exciting Plenary speakers and presenters,
many of whom were high-ranking officials from Brazil. One longer lasting impact of the
conference will likely be an increase in accessibility accomplishments for Brazilians with
disabilities.
Universal design, also referred variously during the conference as inclusive design,
design-for-all or lifespan design, originated as a concept for the built environment. The
phrase was coined by the late architect Ron Mace, a U.S. wheelchair-using pioneer of the
disability accessibility movement, who was remembered at the conference through an
awards presentation in his name. The idea is that through a deliberate design process that
focuses on the needs of all users, especially including persons with all kinds of
disabilities, most of the things that people build or create can be improved for all users,
and also greatly expand the range of users.
Reversing basic design procedures
This concept is in contrast to the usual practice of first designing and constructing
something, such as a building, and then considering how to make it more accessible. The
Designing for the 21st Century III Conference was fueled by an international momentum
to adopt universal design principles and practices in the planning mode. The Conference
aimed to provide opportunities for the growing number of practitioners and promoters of
universal design to engage with each other as multi-disciplinary colleagues. Designers,
educators, leaders from disability, aging and sustainability organizations, business, media
and government all attended the Conference, and had many opportunities to learn from
each other, as well as make new connections for future endeavors.
This international conference built upon the successes of Designing for the 21st Century I
in 1998 and Designing for the 21st Century II in 2000 (both held in the United States) as
well as the International Conference for Universal Design of Fall 2002 held in
Yokohama, Japan. Adaptive Environments, a 25 year old USA-based NGO, continued in
its role as primary Host for the Conference. Centro de Vida Independente do Rio de
Janeiro (CVI-Rio), the first independent living center in Latin America, was the other
Host Partner.
A significant aim of the Designing for the 21st Century III conference was to act as a
catalyst for building understanding and collaboration between the developed and
developing nations. Brazil was chosen for the Conference site because it exemplifies
economic disparity, boasts a variety of universal design experiments, is a "South" nation,
and its capital city, Rio is an attractive location for international conferences.
Why Brazil?
Brazil is the largest nation in Latin America with 182,032,604 people. Around 50% of the
population accounts for just 10% of the national income - the internal economic
disparities parallel those of the world at large. The demographics are complex - from the
fact that 47% of Brazilians are of African descent to the fact that Brazil has the largest
community of Japanese outside of Japan. Within this huge geographical land mass more
than 80% of Brazilians live in urban areas.
The Conference planners also felt there is exciting potential for Brazil to model the
national integration of universal design. Innovative Brazilian leaders are shaping public
policy and finding ways to excite ordinary citizens about design-for-all. A new initiative
on accessible technology has been created out of President Lula's office. The city of
Curitiba has created an international model of integration of sustainable and universal
design in transportation and urban design.
The following session descriptions are illustrative of the Conference content, with a focus
on technology and media, transportation, designers and leaders with disabilities, Japan
and Latin America.
Pre-Conference Workshops
Transport Highlights
"Inclusive Design of Accessible Transport" Public transportation that is designed for all
passengers, including people with disabilities, is sorely needed in all corners of the world.
This workshop provided an overview of key elements of a truly universally designed
transport system, with presenters pointing out that there is more to true accessibility than
just getting on and off the vehicle. For example, public streets must be designed with
curb cuts in order for disabled passengers to be able to get to the transit station and then
to their destination, and traffic must be controlled near crosswalks at transit stations in
order for passengers to be able to safely cross the street. Challenges for rural areas and
for countries with restricted public transit budgets were also addressed.
For transportation advocates from countries such as the U.S., where many hard-won
victories have led to accessibility that can even sometimes be taken for granted, it is
extremely gratifying to see similar victories in other parts of the world. The pace of
advances in universally designed transportation is increasing, and advocates in distant
parts of the world can now find many resources from their peers, making it easier to
advocate for change, to participate in the planning process and to find solutions and
standards that can be adapted for local use. In some countries such as Japan and Brazil,
major legislative initiatives have been adopted at the national level, calling for
implementation of accessible transit systems for the entire country. This opens the door
for advocates to become involved from the very beginning of the planning process, a key
component of true universal design.
A new trend in public transit across the globe is Bus Rapid Transit, which holds great
promise to bring universally designed transportation to many countries very soon. Bus
Rapid Transit, or BRT, combines some of the most attractive aspects of subway, light rail
and bus systems into a new mode of public transportation. BRT uses on-the-road buses
on fixed routes, stopping at raised platform stations that are level with the entrance of the
bus, which is at the side of the vehicle and extra wide to allow passengers to enter and
exit quickly. The passengers pay the fare when entering the station, like for the subway or
light rail, making system-wide fare integration possible. Using BRT, a city can achieve
time efficiencies of light rail or subways at much less cost and time, improving the
existing bus system. Dozens of major cities in all continents are in various stages of
implementing BRT. Universal design features of BRT include low cost for passengers;
intentional color schemes for stations and buses to convey basic use information for nonliterate people, people who speak a different language and people with cognitive
disabilities; clear signage; space for wheelchair passage; ramps instead of steps (often but
not guaranteed); strong illumination; cleanliness and enhanced safety. The City of
Coriciba, Brazil, was an early adopter of BRT, with ramped tubed stations that include
many accessibility features.
The organizer of this workshop and first presenter was Tom Rickert, Executive Director
of Access Exchange International, USA. He provided an overview of the basics of access
to transportation, making it clear that that are many elements to achieving the goal.
Getting to a transit stop involves access to streets and pathways, access to parking spaces,
and access to bus stops, shelters and waiting areas. Getting on board includes access to
buses, trains and subways, vans and mini-buses for door-to-door service, and ramped
taxi's. Advocacy has played a key role in the advances that have been made so far;
legislation is usually required first in order to affect purchases of new equipment and
construction of new facilities, as well as retrofits of existing stations and vehicles.
Brazil
Two speakers from Brazil created real excitement at accomplishments so far and the
commitment at very high levels to achieve a national policy of accessibility to
transportation. Renato Boareto, Director of Urban Mobility of Brazil's National Secretary
of Transport and Urban Mobility described the policy framework in Brazil. Brazil's
Accessibility Program has created a tool for cities and the state to assess the current state
of accessibility of transportation in 407 municipalities. In Brazil, 14.5% of the population
has a disability affecting access to transportation. The country's goal is to identify and
eliminate barriers affecting people with mobility disabilities, sensorial disabilities, and
mental or cultural limitations (including illiterate and non-Portuguese speaking people)
within the next ten years. At the initial planning stages, many challenges exist, including
the fact that 97% of Brazil's public transportation is provided by private companies,
which means that bus transit is completely funded by passenger fares. Many stakeholders
are involved in the planning process, including organizations of people with disabilities.
Nazareno Stanislau, Executive Director of Brazil's National Public Transport
Association, electrified the audience with a compelling speech embracing the concept of
universal design and recognizing the important role of persons with disabilities in
transforming the quality Brazil's mass transportation. Brazil's new legislation that
requires an accessible system in ten years was developed with the involvement of all the
major stakeholders, so he felt there was a good chance that implementation will actually
occur. He pointed out that people with disabilities were previously regarded as a problem,
but the new realization is that meeting the needs of disabled people will improve the
quality of mass transit for everyone, adding that "the attitudes and values of transport
officials and the public in general will be radically changed about people with
disabilities".
A coalition called the National Forum for Urban Reform has a proposal that would
combine public transportation, universal design and environmental protection policy.
Their specific recommendations are (1) resources for public transportation should come
from a tax on gasoline, (2) reductions in fares for poor people, (3) acquisition of a new
family of vehicles for buses, light rail and subways with universal design, and (4) support
for workgroups of citizens to develop programs for citizens to get around without cars.
Brazil's transportation reformers envision a safer mobility environment for all through
enhanced public transport. 30,000 - 40,000 people in Brazil are killed in vehicle related
accidents every year. Under the theme "Peace in Traffic", Stanislau called for universal
design as an essential component of designing cities for human beings, and not for cars.
Standards defining accessibility will be issued in Brazil in a few months. In the next ten
years, 110,000 mass transit vehicles will be replaced with new ones that have lifts or low
floors with ramps.
Japan
Yoshi Kawauchi, author and universal design pioneer from Japan, was next to speak. In
Japan, the Transportation Accessibility Improvement Law 2000 will bring about
sweeping changes, also within a decade. This law requires facilities and rolling stock to
become accessible, and it establishes a framework for concentrated improvement of
passenger facilities, roads and stations in accord with a municipal transport plan. Each
station and nearby major facilities that are frequently used by aged or disabled people
become the basis for a designated route that must be accessible. Each local government is
required to establish a priority area plan with involvement from local transit agencies,
police agencies (for signage), agencies that are responsible for roads, and organizations of
persons with disabilities.
The target of Japan's law is 10,000 stations, airports and bus/ferry terminals. The 3,700
public transit systems in Japan that serve more than 5,000 passengers a day are covered.
All must participate in developing the local improvement priority areas. The deadline for
implementation is 2010; so far, 10% have reached the goal. Now, about 45% of facilities
with over 5,000 passengers a day have elevators, so there is a great deal of work yet to be
done. In addition to installing elevators, facilities must also add guiding strips for blind
and visually impaired passengers, and wheelchair accessible restrooms. 30% of all trains
have to be accessible by 2010; all buses will be accessible by 2015, including 20-30%
with low floors; 50% of all ferries; and 40% of all passenger airplanes.
Accessibility features that are already designed or underway include ticket vending
machines that can be used by blind people, sound guides in stations for blind people,
portable ramps for breaching the gap between trains and the platform, gates on the
platform to protect blind people from falling when the train is not there, written and oral
indicators of bus location and time, visual displays for trains that indicate where the train
is on its route and also show the locations of stairs and elevators in each station as it is
reached, and visual displays on each train indicating where accessible seats are located.
Japan's new commitment to universal design in mass transit will be quite a challenge to
implement. Millions of Japanese rely on an extremely complex and efficient system that
has up until now been mostly inaccessible. Many will be watching to see if these goals
can be reached without sacrificing the dependability and punctuality of the current
system. For Japanese with disabilities, as well as for a significant aging population, these
changes will be life altering, opening up many new opportunities to create independent
pathways within their communities and beyond.
World Bank
Gerhard Menckhoff, from the World Bank's Transport Sector, gave an in-depth talk about
Bus Rapid Transit (BRT). For numerous cities across the world, BRT is an attractive
alternative to light rail or subway, delivering many of the advantages without the cost of
laying tracks or digging underground. For the emerging field of universal design, BRT
also offers many features that can expand the range of potential passengers and make
mass transit much safer and more attractive. Because resources can be focused on
designing the transit station, BRT is being executed in ways that make it more useable for
people with vision impairments, cognitive disabilities, mobility impairments, hearing
impairments, limited or no written language skills, unfamiliarity with the primary
language, and the general public as well.
BRT has been put into operation in Curitiba, Brazil; Bogota, Colombia; Leon de
Guanajito, Mexico; Quito, Equador; Djakarta, Indonesia; Kunming, China; Taipei;
Ottowa, Canada; Brisbane, Australia; and Pittsburgh, Boston, Los Angeles, and Miami,
U.S. Planning for BRT is underway in Hanoi, Viet Nam; Delhi and Hyderabad, India;
Dar Es Salaam, Tanzania; Akra, Turkey; Sydney, Australia; Toronto, Canada, several
Chinese cities, and Cleveland, Hartford and New York City, U.S.
Accessibility of BRT for people with mobility disabilities is not guaranteed. Several
systems have built ramps or level entries at stations, but that is a local design decision.
Transition plates between the bus and platform can also be found in the stations, but they
are not inherent to the design. For systems with no raised platforms, lifts are required on
the buses. Advocates present at the workshop discussed the need for ongoing work, even
when systems are designed to be accessible, to ensure maintenance of accessibility
features and training of bus operators. One comment was that the disability advocacy
network globally should be fully informed about the significance of BRT and provided
with detailed examples of successful accessibility features in existing systems in order to
be effective in advocating for accessibility and universal design of upcoming BRT
systems.
Access to Mass Media
A Day of Media and Technology Access This day-long pre-conference session focused
on the many existing and emerging forms of media access such as captioning, audio
description and accessible web design. Universal Design to technology in Japan was also
explored in detail.
Larry Goldberg, Director of Media Access at WGBH Educational Foundation in Boston,
Massachusetts moderated the session and gave the first presentation. He covered access
to television, the movies, multimedia and the important role of advocacy in public policy
related to these issues. In the United States, the Federal Communications Commission
regulates the television industry. Rules have been developed requiring closed captioning
and audio description of television programs, and the FCC has also issued new
requirements regarding captioning and digital TV. Similar requirements have been issued
by the Canadian Radio and Television Commission, by the Office of Communications in
the United Kingdom where sign language interpreting is also required, and in Australia.
The conversion from analog to digital broadcasting in the U.S. began in 1998 and is
expected to be complete by 2007. Digital broadcasting creates new challenges for closed
captioning and video description because new tools and standards must be developed for
their inclusion in digital programs. Standards are in development at several different
standard setting bodies, and making sure that they will be followed is a significant
challenge. The Media Access Group at WGBH has a Digital TV Access Project (
www.dtvaccess.org ) that provides support to Public Broadcasting System member
stations and the television industry at large. Digital television was required to make
captions available in 2002. There are no current requirements regarding video
description, although there is some voluntary description available. The DTV Access
Project's goals are to maintain existing services of closed captioning and to develop
advanced services that will make captioning of new programming easier and more
expansive in capability. Digital television will give the viewer more choices regarding
captioning display, such as fonts, font size, character color and background color. New
authoring systems for captioning are being developed. A random survey of television
stations that have converted to digital technology revealed that 1/3 had all required
methods of captioning in place, 1/3 had only one of two required modes, and 1/3 had
none.
Some U.S. initiatives
Movies have been available for 100 years and are now finally accessible, to some extent,
through open and closed captioning systems and audio descriptions. Open captions are
provided through different techniques in the movie industry. Closed captions are made
available through a Rear Window Captioning System that displays reversed captions on a
light-emitting diode (LED) text display which is mounted in the rear of a theater. Deaf
and hard-of-hearing patrons use transparent acrylic panels attached to their seats to reflect
the captions so that they appear superimposed on the movie screen. The reflective panels
are portable and adjustable, enabling the caption user to sit anywhere in the theater. More
information about Rear Window captioning is available at http://ncam.wgbh.org/mopix/ .
Audio descriptions are also available in some theaters. Description conveys the key
visual aspects of a film or television program by describing scenery, facial expressions,
costumes during natural pauses in dialogue. Headsets that receive FM transmission of
descriptions are used to deliver audio description.
While some films are captioned and described, the movie studios are under no obligation
to include captions and descriptions in their films. The number of captioned and
described films is growing, though, nonetheless. The other major challenge in getting
accessible movies to blind and deaf audience members is finding theaters that have
installed the technology for showing films that are accessible. A listing of U.S. theaters
with such features can be found at the mopix website:
http://ncam.wgbh.org/mopix/locations.html . New digital movie projectors operate like
LED projectors but with many advanced features. They offer more options for displaying
captions, as well. Since they are quite new technology, they are very expensive and most
movie theaters have not purchased them.
All of the technical advances in making TV and movies accessible have been
implemented because of effective advocacy by the deaf community and the blind
community, with support from other disability organizations. Ongoing involvement at the
policy level is necessary in order to monitor and retain the existing legal requirements for
TV access, including legal challenges in court, and direct advocacy with movie studios
and theater chains is essential for advancing the availability of movie accessibility.
Bob Regan, Product Manager for Accessibility at Macromedia in the U. S., went into
detail describing the web designer's perspective regarding access to the web. This
presentation was extremely useful because many disability and universal design
advocates have a great deal of experience with the user perspective, but often know very
little about what motivates web designers or what pressures they must respond to. He also
explained the new challenges to accessibility that are emerging as web technology moves
from HTML to Rich Media and also as new screen readers become available.
Chika Sekine, President of Universal Design Institute for Information Technology
(UDIT), Japan, described her business which connects hundreds of users with disabilities
and other nontraditional users of technology with companies in Japan for in-depth user
review of products from a broad accessibility perspective. Over 200 teleworkers are
connected to UDIT, ranging in age from 17 to 87, many with different disabilities or with
connections to disability. They evaluate Information Technology devices and propose
improvements from the point of view of diverse users.
Japan initiatives
In Japan, 25% of the population will be over 65 by 2015. 50% of the adult population
will be over 50 years old by 2005. This group represents over half of tax payers, voters
and consumers with money, time and a desire to learn. Many have multiple mild
disabilities affecting their ability to use technology. On the other hand, most of the
designers in IT companies are in their 20's or 30's and lack experience with many social
realities. UDIT bridges the gap between developers and users, and much more effort
towards this goal has been realized.
The concept of Universal Design addresses this problem. Through designing technology
with users in mind, products can be more useable for people with different ages, genders,
abilities and physical attributes. The International Association for Universal Design is a
consortium of over 130 companies in Japan that have begun to implement Universal
Design in many different ways. (More about IAUD's half-day session at the conference
later in this report.) Universal Design can well become a keyword for the 21 st Century,
as important to society as ecology.
She summarized the results of research recently conducted in Japan about the amount of
effort that major companies are dedicating to universal design, and also measuring the
general public's receptivity to the idea of universal design. This research is reported in a
special issue of "Nikkei Design" dedicated to Universal Design from June, 2004. Over
400 employees in 122 companies hold jobs dedicated to implementation of Universal
Design. About 60% of managers in Japanese companies include Universal Design as one
of their business objectives, and the number of Universal Design officers increased from
25% in 2003 to 40% in 2004. 79% of companies conduct user surveys, and 80%
interview a wide range of users from the beginning of the product development process.
The highest ranking companies in Universal Design activity are Toto, Toyota, Matsushita
and Hitachi. Japan is eclipsing other countries in adopting universal design as a major
corporate initiative, and the general public is also more aware and supportive of the
concept. In a survey of the general public, 24.8% of respondents were familiar with the
concept but didn't understand its meaning well, and 31% were familiar with both the
concept and understood its meaning. Over 90% felt that Universal Design is an important
goal for companies, and over 15% felt that it should be mandatory. 88% felt that a
company's brand image would be improved by adoption of Universal Design, and a
majority of all, even those in their twenties, would select a product with Universal Design
features over a less expensive item.
Public policy in Japan is also following this trend. In December 2003, the government
adopted a basic plan for disabilities that promotes Japanese accessibility standards and
procurement of products that comply with the standards. In May and June of 2004,
formal standards regarding accessibility of Information and communications equipment,
software and services, and also web content were adopted. A set of standards on office
and telecommunications equipment will be adopted in the near future.
Research on Universal Design has been conducted through a collaboration of Hitachi,
Keio University, the University of Tokyo, the Tokyo Institute of Technology, and UDIT.
This team of organizations has investigated possible new applications of information
technology with a particular emphasis on promotion of a ubiquitous information society.
UDIT publishes information and reports on these developments and challenges at
http://www.udit.jp/ud/report/8mg/ .
Web Access
As the "Accessibility Champion" at Macromedia, Bob Regan interacts with web
designers about web access on a regular basis. He has found that web designers are by
nature visually oriented, since they are graphic designers, and therefore they have a very
difficult time understanding that websites can be made accessible to people who have
vision impairments and are not used to communicating information verbally rather than
through graphics. Learning about web access takes web designers out of their technical
area of expertise, and therefore makes them uncomfortable. They also are often unaware
of the difficulties of taking in information with one's ears rather than one's eyes.
Regan requires web designers who work under his supervision to use a screen reader for
30 minutes a day for at least three weeks in order to gain a working sensitivity to
obtaining information orally. Noting that it takes a newly blind person nine months of
rehabilitation to learn how to perceive through hearing, he reinforces his message that
using the web with a screen reader can't be learned overnight. It can take approximately
an extra 10% time to design a website so that it's really accessible once a designer has
learned the skill of using a screen reader; otherwise, web design costs might even be
doubled if the designer has no working familiarity with how a blind person interacts with
websites using a screen reader. For example, with a screen reader, using a mouse is
irrelevant, since you have to be able to see the cursor to use a mouse. Blind people
navigate through a website using the keyboard. Most web designers can't imagine using a
computer without the mouse.
Today's web access standards are most relevant for web sites designed using HTML, a
web design programming language. Newer web design tools, such as FLASH, will be
easier to make accessible according to standards for web access that are under
development now. So, in other words, web access standards have fallen behind the
newest web design tools, and web designers will have an easier time with web access
once the new standards are released.
Case studies
Regan presented a case study of web design and web access. The San Francisco Museum
of Modern Art came to him after their web site had been built for help to make it
accessible. He first asked them to strip out all the graphics and audio from their site, so
that they had only text to work with to map out the structure of their site. This way of
looking at their web site revealed that it was poorly designed for all users because it took
a long time to get to the actual content on the site. The re-design for accessibility resulted
in a website that would work better for everyone. The Museum's web site also used audio
that automatically played when a user came to some web pages; the accessibility analysis
revealed that this audio interfered with the output of the screen reader used by a blind
user. One hopeful aspect of new web tools such as FLASH is that it can detect the
presence of a screen reader and can be programmed to turn off the audio and only play it
when an audio button is pushed by the user.
The future of web access will be made much more complicated by multiple platforms for
computer web use (Windows, Apple, LINUX) and multiple screen readers that will be
used. Blind users are expected to migrate over to screen readers that will be built into
new Apple computers and into LINUX as well. In addition, Mozilla (a web popular
browser) will soon be accessible, and so there will be multiple web browsers in use
among blind users as well.
European approach
A Universal Design Mentality and Culture in Development: Process and Dynamics in
Europe
Four presenters from the field of architecture provided a view of Universal Design as it
plays out in Europe. From the policy level to the local building design level, Europe can
be regarded as a single entity, the European Union, and it can also be understood as
several different countries, each with its own culture and history regarding both design
and policies regarding persons with disabilities. Since the economic conditions and
culture are comparable to the U.S., Europe can be contrasted with American policies and
practices. The Americans with Disabilities Act has been inspirational to Europe, however
there are real differences that affect how Universal Design is applied. Europeans are more
used to a service model of disability, as opposed to the ADA's legal rights approach with
a complaints basis of enforcement. Americans have developed a system that embraces the
social model of disability, which strives to treat disability as a normal status and seeks to
achieve macro solutions. European disability policy, although it is really still disparate
policies in various countries, is still more based on the medical model, which seeks
solutions at the micro level, or with the individual with a disability.
The first speaker, Hubert Froyen, Professor of Architecture, PHI, Belgium, made several
general observations about Europe in general. He portrayed Post War Europe as in a
process of change away from its deeply hierarchical sociopolitical institutions to a more
egalitarian structure. Under the new European Union (E.U.), concepts of nondiscrimination are taking hold, along with a rising general standard of living, although
there are still gaps between rich and poor, especially in Eastern Europe. The Nordic
countries have a long history of respect for human rights and equality of opportunity for
all. The middle countries of Western Europe tend to put fewer resources into social
services and take a more paternalistic attitude. The southern countries make even fewer
social investments, although there are some new projects and initiatives to the contrary.
Countries in Central Europe have a great deal of catching up to do, and there are some
innovative approaches emerging in the post-communist era. His own experience has led
him to believe that it is very important for physical access to come first, serving to open
the door for new technical and economic approaches to disability to develop. "Disability
leads to a particular perception of the world," he stated. "Collaboration between disabled
and non-disabled people yields counter-global homogenous trends. Especially for the
younger generation, which is very open minded when it comes to concepts of Universal
Design and new ways of looking at disability, there is great enthusiasm for developing
new projects together between disabled and non-disabled people."
Sweden
Hans Von Axelson, from the National Accessibility Centre, Office of the Disability
Ombudsman in Sweden, started with a strong statement. "The Swedish in general believe
they are the best in disability policy. But their national arrogance keeps them from seeing
the segregation of persons with disabilities that still exists." There are well designed
accessibility tools but poor accessibility of common products. Despite the fact that
Sweden has an ambitious welfare system, people with disabilities still experience many
barriers to society. Disability policy still focuses on individual needs.
In May 2000, Sweden enacted national legislation based on the concept of full
participation of persons with disabilities in all sectors of society. All areas of government
are required to integrate a disability perspective into their activities. The National
Accessibility Centre coordinates all sector authorities, developes guidelines and sets
priorities for implementation of Universal Design as the legislation is followed. By 2015,
there will be many Swedes over 80, and a Universal Design approach will best meet their
needs. The National Accessibility Centre will work towards incorporating an antidiscrimination capacity into the social policy regarding disability.
Italy
Luigi Biocca, a Researcher and Architect with the Construction Technologies Institute at
the National Research Council in Italy provided a specific example of how Universal
Design principles are being applied in low-income public housing, where units are small
and present interesting challenges to the goal of accessibility. Pointing out that strict
adherence to building codes can sometimes restrict creative solutions from being
developed, he expressed support for the new performance based approach that has been
recently adopted in parts of Europe. As an example, he showed a blueprint of a very
small apartment unit that solves the problem of access to a very small bathroom space by
placing the bathroom in a hallway that has doors that can be closed at both ends. The
bathroom has a sliding door that can be opened when the hallway doors are closed, in
effect expanding the available space for a wheelchair user. Further information about this
example, the "User Friendly House" can be found at www.progettarepertutti.org .
United Kingdom
Marcus Ormerod, a Researcher with SURFACE Inclusive Design Research Centre at the
University of Salford, U.K., led with an attention-getting statement, "Even if you are on
the right track, if you stand still, you will get hit by the train." Since passage of the
Disability Discrimination Act in 1995, there has been a great deal of activity leading to
Universal Design in Great Britain. Standards and building codes have been established,
and legislation calling for "lifetime homes" that can be adapted to the person as
disabilities are acquired has been passed. All of this in spite of the fact that Britain is not
used to the concept of human rights in public policy.
Ormerod stated that master planning is where Universal Design should first be applied
and gave examples of layouts of towns with and without good Universal Design
planning. Those with good design had taken into account the location of major areas of a
town, how people can move about easily, and where frequently used areas are situated in
relation to each other. He advocated for the appointment of an Inclusive Design
Champion as a part of a Master Plan team, with access consultants brought in and with
strong user participation.
The session ended with a visionary statement: "Liberty, Equality and Fraternity Universal Design, or Design for All, as a utopian construct, deeply rooted in human
rights, echoes this motto of the French Revolution, and by virtue of its "unattainability"
entails a constant need for regeneration in mentality and in culture, in dynamics and in
processes, in ethics and in values."
Workshop: Disability Leaders Working from the Inside Out
An international array of disability activists now working inside government to achieve
Universal Design goals provided lessons from their own experiences, demonstrating that
significant accomplishments can be realized working from the "inside". Each presenter
began their career in accessibility working as activists, learning how to influence public
policy and how to develop programs from outside government. As each person became
more successful as an activist and community leader, the opportunity arose to take a
position with significant responsibility for disability policy within government. Often,
this new possibility came about because of a shift in the political leadership in the
country or the local authority, accompanied by a commitment from the newly elected
leader to make meaningful change for persons with disabilities. The disability activist and
leader may have been involved in the political campaign that brought the new
government to power, and during the campaign, succeeded in bringing disability issues
into the campaign. The new government then became interested in fulfilling these
campaign promises, and the disability activist was invited to join the new government to
take on this challenge.
Mexico
Taide Buenfil now works in the Office for the Promotion of the Inclusion of Persons with
Disabilities in the Office of the President of Mexico, Vicente Fox. She is an architect and
as an expert in accessibility, she works with every Ministry within the government of
Mexico to make sure that each program within every Ministry is reaching and including
people with disabilities, as appropriate. Her office recognizes that disability is a factor in
all facets of government, working through laws, regulations, and standards at all levels of
government. The Office for the Promotion of the Inclusion of Persons with Disabilities
has visible support from the President, which makes it easier for her to implement its
mission. There are also people with disabilities in the President's Cabinet.
Contrasting her current work with her previous role as an activist within an NGO, Ms.
Buenfil acknowledged that the pace of reform within government can be frustrating.
Processes have to be followed, and as an "insider", she must be more restrained than an
activist working outside of the system, who can be more critical of government agencies.
Budget shortfalls also can slow the pace of change. Disability activists working outside of
government and those working within government must work together, which is how she
functions. Because she has worked from the NGO position, Ms. Buenfil can avoid the
appearance of paternalism, and this strengthens her ability to work in partnership with
NGO activists.
Brazil
Edison Passafaro, now Executive Director of the Municipal Council of Persons with
Disabilities in Sao Paulo, Brazil, became a disability activist after he became disabled as
a young adult and experienced the stigma of disability and widespread lack of
accessibility in Brazil. He founded the second Independent Living Center in Brazil, in
Sao Paulo and also started a business selling hand controls for automobiles and other
kinds of assistive technology. After Edison and other activists succeeded in getting a
local ordinance on accessibility passed, the City of Sao Paulo established the Municipal
Council of Persons with Disabilities. He became its first Executive Director.
Because the Council has enough of a budget to hire employees, it has been very effective.
The Council and its staff developed a plan, "Sao Paulo without Barriers", which adopted
principles of Universal Design and has broad authority to create access. The first stage is
to eliminate barriers to the built environment and to apply Universal Design to the
construction of new buildings. The plan coined a new phrase, "Accessible Urban
Mobility", which applies to all citizens in many realms: public housing, streets and
sidewalks, transportation, public buildings and communication. It includes economic
goals for persons with disabilities, with steps leading to economic self-sufficiency,
paying taxes and consuming goods. The work of Sao Paulo has become a model for the
country, and other cities in Brazil are following this example.
International Association for Universal Design: best practices in Japan
A special half-day session was coordinated by the International Association for Universal
Design (IAUD), an organization that was founded after the 2002 International
Conference for Universal Design in Japan. The IAUD has 130 corporate members in
Japan from a wide variety of industries. Because Japan has a rapidly aging population,
the concept of Universal Design has taken hold with more strength than in any other
country. Already, approximately 40% of the population in Japan could benefit from
increased accessibility, taking into account baby-boomers aged 50 or older who
experience functional limitations and also people with disabilities who are younger.
IAUD recognizes that the rapid development of technical innovation has created
unnecessary barriers, and that many more people can benefit from Universal Design, not
just seniors and persons with disabilities, including children, pregnant women, foreigners
with different native languages and lifestyles. According to IAUD's prospectus, "We
must create products for a society where there is no need to feel inconveniences because
of the differences in age, sex, race or one's abilities".
IAUD advances the concept and practice of Universal Design in Japan, and also promotes
it worldwide. Through popularization of the idea and through implementing it and
placing more accessible products into the marketplace, IAUD hopes to revitalize Japan's
stagnant economy and to improve living conditions for people across the world. IAUD
operates with a permanent staff on several levels: through planning seminars and lectures,
establishing Universal Design vision and targets for the organization, establishing
standards and guidelines, developing individual projects through collaboration between
companies and providing assistance to members, through holding Universal Design
events such as conferences and exhibitions, and through publications and managing a
website. Dialogue with consumers is at the core of all IAUD activities.
Introducing the session, Kazuo Toda, Executive Vice President of Matsushita Electrical
Co. and Chairman of the Council of IAUD, read a statement of welcome and support
from Prince Tomohito, Patron of IAUD. In IAUD's brochure, Prince Tomohito says, "No
one is 100% disabled. And no one is 100% healthy. Everyone has disabilities in some
part of his or her body (or mind), and has healthy parts at the same time. Universal design
lets everyone lead more affluent and comfortable lives."
Naotsune Hosono from Oki Electric gave an overview of Oki's approach to Universal
Design. Oki Electric produces equipment used in connection with information and
telecommunications systems such as ATM's and ticketing machines. Their company
vision is of an "E-Society" that allows people to function without limitations of time and
space. Universal Design is an essential method for improving service to their customers.
They follow the JIS standard 8341 Part 1, relating to accessibility for persons with
disabilities and older persons to information processing and web content. They seek out
user involvement and feedback in all stages of the design process. As an example, they
manufacture an ATM with tactile symbols and a touch screen that is designed with blind
people and people with mobility limitations in mind.
Yoshide Yano from Fuji Heavy Industries (Subaru automobiles) described steps taken by
Fuji to apply principles of Universal Design to the workplace. In 1997, the Japanese
government raised the employment quota for persons with disabilities from 1.6% to 1.8%
and toughened the enforcement of this requirement that people with disabilities must be
part of every company's workforce. Companies were given two ways to comply, either by
setting-up a separate subsidiary where workers with disabilities are employed or
integrating them into the existing workforce. Most companies in Japan favor the separate
subsidiary approach, which is consistent with the segregation that is still found
throughout Japan. Fuji, however, decided to bring persons with disabilities into the
workforce, reasoning that this approach is more realistic because of changing
demographics throughout Japan that are expanding the diversity of the workforce in
general: the aging of the population and more women in the workplace. Since Fuji's
manufacturing facilities use heavy duty, high speed assembly lines, many of their
workers experienced barriers at work, even short or tall workers. By modifying the
workplace so that people with disabilities can work there, Fuji made it easier for many
different employees as well.
Fuji created barrier free work areas and barrier-free pathways throughout their facilities,
including the covered parking area and the locker room (where there are a variety of
heights to the lockers now, since not all disabled people need the same height). They
developed a universally-designed parts carrier that all employees can use, a universallydesigned pressing machine, a universally-designed quality check lamp, and a new system
for opening the cargo bays. As a result, Fuji has found that the workplace is safer and
more efficient for all workers, and product quality has improved.
Workers with disabilities are continuously surveyed to identify additional barriers. After
the physical and communication barriers were addressed, attitudinal barriers came next.
Some of the workers with disabilities, especially deaf workers, complained that they felt
marginalized socially. A support system was developed to bridge the gap between
disabled and non-disabled workers, and sign language classes were offered. The sign
language class for supervisors is mandatory and is taught by deaf workers. The optional
class, which is offered to all other employees, is always full even though the workers
must pay for it themselves. These measures have improved the morale of the entire plant.
The human resources personnel who have initiated these steps have also learned to
respect the ability of workers with disabilities to take on new challenges, even if this
sometimes means that their primary job is to get out of the way. Future goals include
equal opportunity to worker training for employees with disabilities, especially deaf
people, and increasing the sensitivity at the workplace to deaf culture and
communication.
Kei Tomioka from Toshiba's Human Centered Design Group provided an example of
how Universal Design is applied at Toshiba with respect to the development of accessible
cell phones. Several steps are followed:
• Understand and specify the context of use
• Specify the user and organizational requirements
• Produce design solutions
• Evaluate the designs against the user requirements
• Prototype is developed
• User interviews and focus groups
For cell phones, users with disabilities identified several areas of need: key pad design,
phone size, and audio feedback during use. Performance testing and useability testing
were also conducted with users with disabilities to assess different solutions that were
developed. During a product interactive focus group on keypad design, key height and
key shape were reviewed. For the audio feedback needs, twenty different features were
identified as potentially useful. Users were asked to rate the necessity for each item in
order to prioritize these features and determine which ones to include. Not all could be
included within the limited memory capability of the phones. The actual product that
resulted from this process, VM 4050, is now on the U.S. market.
Hitoshi Kanamori and Kenji Misugi from Toyota Vehicle Engineering Division gave a
wide-ranging presentation on Toyota's accomplishments in Universal Design. Toyota's
goals are to minimize their automobiles' impact on the environment and to maximize
their safety and comfort and fun using Universal Design. They have designed an
ergonomic index which takes into consideration different body sizes and capabilities. It
includes 180 items to evaluate, and rating scores are given for each one. For example,
ease of ingress and egress are evaluated for different configurations of legs, waist and
head/shoulders. Visibility of gauges, meters and indicators are scored for all age groups.
Weighting factors for each item include tolerance for error, physical effort, easy to
understand and user perception of comfort.
The Toyota situational suitability index is another method for evaluating different car
designs from a user perspective. 500 items are included in a database of usage situations.
30 items are selected for each vehicle, and the different situations are ranked for the
functions of specific tasks within that situation. For example, one situation is putting a
child into a seat in the rear of the car, or another is putting a wheelchair in the area behind
the front seat. User feedback is obtained through interviews, questionnaires, and invehicle dynamic research.
The Raum, a model sold in Japan, was developed with specific user groups in mind: older
people, children, care providers and people with limited mobility. User reviews were
conducted with people from these groups repeatedly, with specific attention to wheelchair
users and passengers with guide dogs. The height of the door handles was specifically
tested for wheelchair users and children. Inside the vehicle, there are several handles for a
wheelchair user to grab to assist in transferring to either the front or rear seats. The seats
also swivel 90 degrees to the side of the car for ease of use by people with limited
mobility. The Porte, another Japanese model, was tested for ease of shopping with a baby
and for wheelchair use. It's advertised as a "Smart Life Supporter". Features include
sliding doors, a low flat floor, and a lift-up folding seat that can provide space for a
wheelchair. In the future, Toyota will offer smaller cars that work well for wheelchair
use, including features such as lifts and ramps.
Yasuaki Takamoto from Fujitsu reviewed a wide variety of accomplishments in applying
Universal Design to ATM's, cell phones, web access, and customer service. The "Raku
Raku" cell phone was designed for older people and people with vision impairments, as
well as the general market. It has simple, easy-to-use features including one-touch dialing
for pre-set numbers, a blinking button to indicate ringing and large buttons. The Fujitsu
computer opens and closes easily, has a large touch pad, a comfortable keyboard, large
fonts and opens popular software programs with one button.
Fujitsu's ATM's are designed for easy use by people with mobility disabilities, including
a round indentation along the side for a wheelchair wheel, allowing a wheelchair user to
get close. It includes a phone handset for blind users, and offers screen guidance for
novice ATM users or people with limited attention. Fujitsu has adopted internal
accessibility guidelines for its website based on guidelines from the World Wide Web
Consortium and the Japanese JIS standard. Fujitsu also offers web designers an online
tool that is an access checker, "Web Inspector", a tool called "Color Selector" that checks
on color usage in web sites for accessibility for people who are color blind or have
cataracts. "Color Doctor" displays a simulation of how objects in a website or other
graphics based document appear to someone who is color blind. These tools are available
online at http://design.fujitsu.com/en/universal/assistance .
Toyoyuki Vematsu of Panasonic Design Company (Matsushita) described how the
founder of Matsushita announced a company policy on Universal Design as early as
1942. Matsushita developed principles of Universal Design in the mid 1990's, and in
2002 at the International Conference on Universal Design in Japan, the company's
President issued a major directive on Universal Design. Matsushita has introduced
several products based on these principles:
• a personal fax with large buttons, pre-recorded user instructions and extra loud
volume;
• a remote control for heating and air conditioning systems with a large LCD screen
with oversize characters, a voice recognition interface, and concave buttons for
persons with limited dexterity;
• an LED neck light that can be used hands-free, a one-handed switch, and very
lightweight;
• a build-in shower seat that includes a remote control and is designed for a wheelchair
user; and
• a microwave oven with large characters in a white backlight LCD and large easy-touse buttons and high-contrast text display.
In October, 2004, Matsushita opened two Universal Design Labs in Tokyo, one that is
open to the public. The company has a Universal Design Committee that is responsible
for creating user friendly products.
Audience members were quite impressed with the large number of companies in Japan
that are involved in IAUD, and also excited by the many examples of products that are
available. Many companies in Japan are responding to the challenge of an aging
population with a rigorous engineering and design approach that will benefit countless
numbers of consumers. Many felt that it is critical for companies in other countries, as
well as policy makers, to understand how much has been accomplished in Japan.
Designers with Disabilities: access design professionals, opportunities for artists
with disabilities
This session was moderated by Kristin Schneider of Adaptive Environments, the host
organization of the conference. She described a project of Adaptive Environments,
inspired by the life of Ron Mace, the father of Universal Design, an architect with a
disability. The project, funded by the National Endowment for the Arts, has resulted in an
international network of designers with disabilities. Activities have included research
with designers with disabilities worldwide, the development of the international network,
setting up an e-mentoring system, participation in Career Days given by the Boston
Society of Architects (making these events more accessible in the process), and
conducting a survey of design schools in the United States. The NEC Foundation of
America supported the development of a book, "Building a World Fit for People", a
portrait of 21 designers with disabilities, which is available online at
www.accesstodesign.org .
The initial concept has now been expanded through work with the Association of
Collegiate Schools of Architecture and the American Institute on Architecture's Diversity
Committee, which has expanded its definition of diversity to include disability. One of
the project's current goals is for the accreditation of schools of architecture to include
criteria related to disability and universal design. It is also currently training vocational
rehabilitation counselors about careers in design. Training materials can be found at
www.careersindesign.org . Kristin Schneider then introduced several designers with
disabilities who belong to the network.
Jorge Falcato, an architect from Spain, described his many projects and accomplishments
in advocating for accessibility standards and requirements and in work on specific
buildings and facilities. He warned that designers with disabilities can sometimes find
themselves being used by politicians to give the impression that they are more committed
to accessibility than is the reality. He also reminded the audience that just because the
architect uses a wheelchair, it is easy to forget that not all persons with disabilities use a
wheelchair, and accessible design must be broader than that.
Taide Buenfil, an architect from Mexico who now works in the Office of the President
engaged in broad advocacy work, became disabled as a student of architecture. Her
school had nothing to offer related to disability, and she became involved in grass roots
advocacy. With many accomplishments, including eventually teaching a course on
disability and accessibility at the same University, she advised the audience to have
ambitious goals and work in collaboration with other people with disabilities.
Regina Cohen, an architect and urbanist with the Pro Access Group in Rio de Janeiro,
became disabled after leaving school and practicing for several years as an architect,
oblivious to disability. Once she experienced the barriers and difficulties created by other
architects, she dedicated her work to accessibility, working through the Independent
Living Center in Rio. The Pro Access Group is a research center at the Federal University
of Rio. There, she engages in research, teaching and extensive projects. She has seen
huge changes over the course of her career, and finds political activism an exciting
endeavor.
Sylvana Cambighi is an architect from Sao Paulo, Brazil who was born with her
disability. Her background was different from the other panelists, and much of her
success is because her family involved her in all activities and supported her in many
ways. After she graduated from a regular high school, her father enrolled her in a
technical school for industrial designers. She went on from there to architecture school,
even though her classmates carried her up three flights of stairs every day. She started her
own practice out of architecture school and found herself working on accessibility
projects and then went to work for the city. She has worked on developing accessibility
guidelines with the Municipal Council on Disability, and is now also teaching at the
University.
Yoshi Kawauchi is a licensed architect in Japan who decided to become an advocate after
ten years of design work. He finds that designers in Japan often don't respect or consider
the needs of end users. He believes that professional designers and users need to work
together more, and much of his work is involved in building a bridge between the two
groups. He leads educational workshops for local activists and local government officials
where the participants are actively engaged in practicing universal design. Universal
Design should be an endless process of continuous improvements, a spiral up process that
centers on users.
The workshops and conference sessions described above are a small sample of the many
different topics covered and exemplary presenters from all over the world. There is no
doubt that Universal Design is a concept that will have a significant influence in the 21 st
Century. The progress that has been made in many countries in a relatively short period
of time is truly exciting. The business world is familiar with important trends that have
come from Japan. Therefore, it is very important to see Universal Design becoming a
publicly recognized idea there, with many large companies actively introducing new
products with Universal Design features. Universal Design could become as widely
adopted by businesses as the Total Quality Movement of the 1980's.
The webite for the conference is at http://www.designfor21st.org/ . The conference
organizers have promised that they will post the electronic versions of many of the
conference presentations in the near future.
Conclusions - Where is Universal Design Going?
As an American, it is exciting for me to see so many major advances in Universal Design
and accessibility occurring in so many other countries and regions. Japanese public
policy, corporate practices and public opinion are all responding to the Universal Design
movement, and much more can be expected. I would not be surprised if Universal Design
became a major business innovation coming from Japan and influencing how business is
done in the West. This would be a fantastic contribution that the Japanese could be very
proud of.
The European Union and Latin America are also regions that should be watched for
innovative approaches to Universal Design and accessibility. In Europe, the movement to
go beyond standards for accessibility and to adopt a functional assessment approach is
very interesting. It could yield very creative new practices and solutions to eliminating
barriers, especially in an environment that is full of historic structures. The fear, however,
is that meaningful measures to the new approaches might not always be used. The reason
for very detailed standards and building codes is that the average designer and builder is
too far removed from the daily realities of living with a disability, and accessibility
solutions that appear promising at first blush might not really deliver the increased
function and accessibility that people with many different disabilities should expect. The
end result could be designs and new construction that have a Universal Design or
"accessibility" label but actually impose unforeseen barriers.
Brazil currently has a disability-friendly national government, and has developed some
very successful disabled activists, designers and government employees. Despite a
staggering poverty rate, meaningful changes are taking place, and much more is in the
planning stages. It is encouraging to hear elected leaders talk about Universal Design and
accessibility as a strategy for improving the lives of all Brazilians. With very innovative
approaches such as the accessible public transportation system in Curitiba to serve as an
example, Brazil could play a pivotal role in leading "the South" forward.
It is also stirring to have met so many successful and capable disability activists,
architects and designers, and leaders who are actively engaged in making Universal
Design a reality all over the world. Anyone from the United States or Europe who
believes that the developed world or the West are ahead of the rest of the world in this
front should think again. Thanks to the talents and dedication of numerous disability
activists, in many different roles, this field will be an arena where we all will have much
to learn from each other for a long time.
Access & Technology Briefly
Compiled by Jennifer Geagan (jennifer@wid.org), World Institute on Disability
Libraries for the Blind Launch Digital Audio Book Service
State libraries for the blind in Colorado, Delaware, Illinois, New Hampshire, and Oregon,
along with the National Library Service for the Blind and Physically Handicapped (NLS),
part of the Library of Congress, have partnered to launch an innovative digital audiobook
service for visually impaired users. Unabridged (http://www.unabridged.info/) enables
blind patrons to check out and download digital spoken word audio books directly to their
computers. The digital audio books can then be played back on a PC, transferred to a
portable MP3 playback device, or burned onto CDs. For more information, visit http://inewswire.com/pr2127.html.
Proposal for the addition of Tactile Identifier the ID Cards by The Accessible
Design Foundation of Japan
This document describes proposed recommendation for a tactile identifier to be included
in the embossing process for various ID cards. The tactile identifier embossed in the
corner of the Name and Address Area of ID cards functions as a card identifier for the
visually-impaired to easily distinguish type of card, orientation as well as ownership of
the card. As we can see from recent efforts by the United Nations to draft the "UN
Disability Convention," people around the world have started to focus seriously on the
removal of barriers for the physically-impaired in order to ensure them more healthful
and socially equal life. In keeping with this goal, Accessible Design Foundation of Japan
(the Kyoyo-Hin Foundation, formally the "E & C Project") has been conducting various
types of research and surveys on problems visually impaired people encounter in their
daily lives. One such survey on plastic cards was conducted in October 1993 in which it
was found that the usability problem arose from the fact that all the cards had nearly
identical shapes and sizes. To read the proposal online, visit
http://www.kyoyohin.org/08tokyo/selfmark1.html .
'Thinking Cap' Controls Computer in New Experiment
Four people were able to control a computer using their thoughts and an electrodestudded "thinking cap," U.S. researchers reported on Monday. They said their set-up
could someday be adapted to help disabled people operate a motorized wheelchair or
artificial limb. While experiments have allowed a monkey to control a computer with its
thoughts, electrodes were implanted into the animal's brain. This experiment, reported in
the Proceedings of the National Academy of Sciences, required no surgery and no
implants. "The results show that people can learn to use scalp-recorded
electroencephalogram rhythms to control rapid and accurate movement of a cursor in two
dimensions," Jonathan Wolpaw and Dennis McFarland of the New York State
Department of Health and State University of New York in Albany wrote. Read the
report online.
Speech takes on search engines
A Scottish firm is looking to attract web surfers with a search engine that reads out
results. Called Speegle, it has the look and feel of a normal search engine, with the added
feature of being able to read out the results. Scottish speech technology firm CEC
Systems launched the site in November. But experts have questioned whether talking
search engines are of any real benefit to people with visual impairments. To read the
BBC report online, visit http://news.bbc.co.uk/1/hi/technology/4079005.stm.
National Education Technology Plan leaves millions behind
Today, the U.S. Department of Education released its National Education Technology
Plan 2004, "Toward a New Golden Age in American Education: How the Internet, the
law and today's students are revolutionizing expectations". This is the third such plan and
was developed over the past several years with input from thousands of educators,
students, administrators, and those in educational organizations, as well as the technology
industry. It acknowledges the importance of technology in academic achievement as
well as the role of technology in the 21st century. The blueprint frames the direction for
educational technology in American schools for years to come. WebAIM applauds the
plan with the exception of one prominent omission. The plan does not mention the
critical need for accessible technology for millions of students with disabilities. To read
the entire WebAIM press release online, visit http://www.webaim.org/alert.
Disappointment over rail access in the UK
The announcement of the 2020 end date was made just three days after the Disability
Discrimination Bill - which will improve the rights of disabled people - was published in
the House of Lords. "Trains are a vital link in the accessible transport chain," said
transport minister Charlotte Atkins. "It is important that disabled people have confidence
that, when travelling by rail, the train that arrives will be accessible to them." Leonard
Cheshire - a disability charity which has been campaigning on transport accessibility says 2020 is "later than we would have liked". To read the BBC report online, visit
http://news.bbc.co.uk/1/hi/uk/4052277.stm.
Korean Scientists Succeed in Stem Cell Therapy
A team of Korean researchers claimed Thursday they had performed a miracle by
enabling a patient, who could not even stand up for the last 19 years, to walk with stem
cell therapy. During a press conference, the scientists said they had last month
transplanted multi-potent stem cells from umbilical cord blood to the 37-year-old female
patient disabled by a spinal cord injury and claimed she can now walk on her own. The
team was co-headed by Chosun University professor Song Chang-hun, Seoul National
University professor Kang Kyung-sun and Han Hoon, Ph.D, from the Seoul Cord Blood
Bank (SCB). Read the Korea Times report online.
European Commission consultation to make ICT products and services more
accessible
The European Commission has launched a public consultation on how to make the
benefits of Information and Communication Technologies available to the widest
possible range of citizens, including to older people and people with disabilities. This
consultation is a first step in the Commission's endeavor to remove the technical
challenges and difficulties that people with disabilities and others experience when trying
to use electronic products or services such as computers, mobile phones or the Internet.
The public consultation focuses on three key areas in which the European Union could
promote eAccessibility: public procurement, certification, and the use of legislation.
Interested parties have until 12 February 2005 to comment on these proposals. The results
of the consultation will feed into a Commission Communication on eAccessibility to be
adopted before June 2005. For more information, visit the EC website.
Employment
Tribute to Joanne Wilson, Departing RSA
Commissioner
By Dr. Fredric Schroeder, former Commissioner, U.S. Rehabilitation Services
Administration (fschroeder@sks.com)
Issue: On Tuesday, February 8, 2005, RSA Commissioner, Joanne Wilson announced her
resignation. What prompted her resignation and what does it mean for the future of the
public rehabilitation program?
Response: While her resignation does not officially take effect until the end of the month,
today is Joanne Wilson's last day in the office. During her tenure as Commissioner of the
Rehabilitation Services Administration (RSA), Dr. Wilson has shown herself to be an
effective advocate for the public rehabilitation program and the people it serves. She
brought to the position vision and leadership, qualities far too often absent in
Washington. She believes that the strength of the vocational rehabilitation (VR) program
lies in its ability to change lives, one at a time. She knows this intellectually and
personally. As a blind person herself, she faced the fears and insecurities common to
people growing up with disabilities. She knows what it is to live in a world that, however
well intended, assumes you can do very little; she knows what it is to have a family that
wants to protect you believing you cannot protect yourself; she knows what it is to face
discrimination; and she knows what it is to have your confidence eroded, taking what
society believes about blindness and learning to believe it yourself.
In the world of Washington politics, someone like Joanne Wilson stands out and is a
threat. She stands out because she is not afraid to speak her mind. She stands out because
she is honest and determined to do the right thing. She stands out because she takes
seriously her pledge to advocate for the people who count on her to defend the public VR
program-not protect the status quo but defend the program while she helps it grow. She is
a threat because she cannot be controlled; she cannot be bought; she cannot be flattered
or threatened into selling herself out nor the people who count on her.
Shortly after taking office, she released a list of six principles, principles that laid out her
beliefs and values about the capacity of people with disabilities and their right and ability
to live full, integrated lives. While they were her principles, they are truly our principles,
principles that embody the hopes and dreams of people with disabilities. Here they are:
• Individuals with disabilities, including those with the most significant disabilities, are
capable of achieving competitive, high-quality employment in integrated settings and
living full and productive lives in their communities.
• Major barriers to the employment and independence of individuals with disabilities
are the low expectations and misunderstandings society, some grantee agencies,
service providers, or consumers themselves have about their abilities, capacities,
commitment, creativity, interests, and ingenuity.
• Individuals with disabilities are able to make informed choices about their own lives - including their employment options, the types of services they need, the selection of
service providers -- and are able to assume responsibility for their decisions.
• The primary role of VR agencies and other RSA-funded entities is to empower
individuals with disabilities by providing the information, skills training, education,
confidence, and support services individuals need to make informed choices about
their professional and personal lives.
•
Services are best delivered within a framework of accountability, efficiency, and the
least administrative burden necessary.
• The most effective VR, Independent Living, Training and other programs result from
a strong alliance between individuals with disabilities, grantee agencies, service
providers, and organizations representing each. These alliances encourage
accountability through systematic and ongoing assessments of a grantee's policies,
programs and practices.
Joanne Wilson's list of principles were more than window-dressing. She took her
principles and translated them into action. She believed that the program should be a
partnership between the professional and the consumer and that consumers are not the
trade organizations, not the service providers, not the self-appointed spokespersons for
the disabled but people with disabilities themselves. She believes in consumerism. This is
why she led the initiative to integrate mentoring into the work of the state VR program.
Dr. Wilson understood the importance of people with disabilities knowing other people
with disabilities, having their support, sharing a common life experience, and learning
that the limitations of disability are largely the product of society's well intended yet
stereotypic thinking and assumptions about disability. She believes in informed consumer
choice and expected the system to believe in it too and take it seriously. She believes in
consumer empowerment and funded initiatives to help consumers to become full and
equal partners in the rehabilitation process. She believes in reaching out to all people with
disabilities, meeting them where they are and not expecting them to fit into a
predetermined, one size fits all mold. She has remained true to the principles she
articulated at the outset of her administration and people with disabilities the nation over
have benefited from her work. In short, she did what few accomplish; she brought to the
job a human face and human values and an unbending sense of honesty and
determination.
But my intent is not to catalogue her work and accomplishments; I simply want to
highlight the way in which she remained true to herself and true to people with
disabilities. She recognized that the life-changing aspect of our work needed to be
nourished and strengthened and that this requires a true partnership between the
rehabilitation system and people with disabilities.
So why did she resign? On Monday, February 7, 2005, the Department of Education
unveiled its plan to close the RSA regional offices. The same day, the Administration
announced its intent to seek super waiver authority to allow the block granting of a
number of employment related programs, including VR. The next day, Dr. Wilson
resigned. It is my view that she believed these plans, if implemented, would mean the end
of comprehensive employment services for people with disabilities throughout the nation
and, as a person of conscience, would not--could not--be a part of any plan that would
harm people with disabilities.
At the end of the month, we will lose Joanne Wilson as RSA Commissioner. On that day
the Administration will have lost a capable leader; the RSA staff will have lost a valued
colleague; state rehabilitation agencies, independent living centers , and tribal VR
programs will have lost a powerful ally; people with disabilities will have lost a
champion; and we will all have lost a friend. All of us in the rehabilitation community,
service providers, community partners, advocates, and people with disabilities owe
Joanne Wilson our heartfelt gratitude and respect.
Australia: Supported Employment in the Public Sector
By Mark T. Richards, ILRU Project
AUSTRALIA--According to a recent report in the Journal of Vocational Rehabilitation,
supported employment has shown steady growth throughout the world since its inception
in the 1980s. In Australia, 61 percent of people with disabilities who received
employment services were doing so through supported employment. The article presents
research findings of a study of supported employment, particularly the benefits of
placement into public sector versus private sector jobs, which focused on the record of
one of Australia's oldest and largest employment services for individuals with disabilities,
EDGE Employment Solutions.
The EDGE database was examined from January 1984 through May 2002, which
involved 2,653 competitive job positions for 1,063 individuals with disabilities. The
database included placement information such as demographics, primary disability, work
history, means of securing placements, current job, wages, work hours, and length of time
remaining on any given job. This information was linked to an employer database which
differentiated between public and private sector employers.
From its inception, EDGE frequently used public sector positions to facilitate vocational
training and placement of western Australians with disabilities, although many similar
agencies throughout the world tend to focus their efforts on placements into privately
owned businesses. Just over 20 percent of current EDGE placements have been into
public sector positions. This is comparable to the slightly less than 20 percent of
nondisabled western Australians who work for federal, state, or local government. In
addition, EDGE has shown a savings of AUS $13.2m to the Australian taxpayer when
comparing the cost of its services (AUS $18.9 m) to that of unpaid pensions and subsidies
(AUS$ 32.1m).
The authors suggest that agencies similar to EDGE rely more heavily on private sector
placements for reasons that are perceived to be valid, but may not in fact present actual
obstacles to successful employment. These include trends toward downsizing of
government services, entry criteria which may create insurmountable barriers and a
lengthy time frame to secure public versus private sector jobs. The authors address these
concerns but provide data to show that increased work hours, wages including benefits,
and job tenure make such placements very worthwhile.
The citation for the article is Robertson, S., Lewis, G., & Hiila, H. (2004). Supported
employment in the public sector for people with significant disabilities. Journal of
Vocational Rehabilitation, 21(1), 917.
UK Disability Rights Commission Comments on New
Benefits Plan
Incapacity Benefit Reform - Disability Rights Commission response.
Reforms to incapacity benefit announced today were welcomed by the Disability Rights
Commission.
DRC Chairman Bert Massie said that changes to automatic increases to IB being linked
to take up of employment and training opportunities, must coincide with the nationwide
role out of the Government's successful Pathways to Work scheme.
Speaking today after the announcement Mr Massie said:
"Disabled people on Incapacity Benefit are living in poverty. The DRC welcomes the
Government's announcement today that those who are able to, and want to, will be
supported into work. The changes introduced today will mean that disabled people will
be able to make a positive contribution.
"But for these measures to work, high quality support will be needed from assessment of
those deemed able to work, right through to finding and maintaining opportunities to
work."
Mr Massie continued:
"It is important that people on Incapacity Benefit who cannot do paid work are not
penalised financially or made to feel guilty. I hope also that the incendiary debate over
last few months - which has done nothing to encourage disabled people into work and
everything to make the most vulnerable members of our society extremely worried about
possessing pretty paltry sums - can now end and that we can now have a grown up
conversation about the measures needed to help those that can, get back into work."
Pointing to the responsibility of employers to ensure disabled people are not excluded
from work opportunities, Mr Massie said:
"Let's not forget that as long as employers continue to show disabled people the door
rather than work to keep them in a job, we will still have an uphill battle to ensure that
disabled people are genuinely able to participate fully in society. Over one third of calls
to the DRC were about employers refusing to make adjustments that could keep disabled
people in work. There must be more efforts to give employers advice and guidance on
how this can be done."
To Tell or Not to Tell: Disability Disclosure and Job
Application Outcomes
Independent Living Research Utilization Project Research Brief
Hong Kong-based researchers recently completed a study of area employer attitudes
about hiring people with disabilities. Over a three-month period, the research team
responded to all of the 409 job advertisements for clerical positions appearing in the two
major Hong Kong newspapers. Each advertisement received four application letters that
were identical in every respect except one: disclosure of a disability. In one letter,
disability was not mentioned. In each of the remaining three letters, a specific disability
was disclosed: a hearing impairment, walking with crutches, and depression. In all, a total
of 1,636 letters of application were sent, and 331 positive responses defined as an offer of
a job interview--were received.
Data analysis showed a statistically significant difference between the non-disability
group when compared with each of the disability groups. Comparisons of the disability
groups with each other did not achieve levels of statistical significance. There was,
however, a clear ranking of preference: people without a disability, followed by those
with a hearing impairment, those using crutches to walk and finally, those who had had a
depression.
The research team represented three area institutions, the University of Hong Kong, Hong
Kong Rehabilitation Power, and the Chinese University of Hong Kong. The citation for
an article they wrote about the study is Pearson, V., Yip, N., Ip, F., Lo, E. M. K., Ho,
K.K., Hui, H. (2003). To Tell or Not to Tell. The Journal of Rehabilitation. 69:4, 35-38.
Veronica Pearson
Frances Ip
Heidi Hui
The University of Hong Kong
Nelson Yip
K.K. Ho
Hong Kong Rehabilitation Power
Eva Lo
The Chinese University of Hong Kong
Innovative Employment Inititiatives in Russia
By Denise Roza (droza@online.ru) and Kotov Vyacheslav (rabota@perspektiva-inva.ru),
Perspektiva
Official government statistics claim that approximately 1 million people with disabilities
across Russia are employed. Therefore, approximately 12-14% of the total Russian
disabled population of working age is officially recognized as employed. The majority of
these employed persons have disabilities that do not require accommodations in the
workplace or transportation assistance getting to their job. Another large percentage of
these persons are employed at sheltered businesses and factories that are owned and
managed by disability NGOs, at very low wages and little hope of future job security.
A very common arrangement for "officially employed" disabled persons is to be
employed for a minimal fee, with the understanding that they are not required to ever
come to work. This arrangement used to benefit the employer with tax breaks. Moreover,
the employer did not have to make any changes to the workplace or provide much needed
transportation. These kinds of schemes and sheltered employment opportunities for
disabled persons have survived the transition from socialism to a mixed capitalist
economy. However, recently, companies using these employment schemes have lost a
significant part of their tax benefits, and disabled people across Russia have been
dismissed. Some of these companies that are owned by the disability NGOs continue to
provide very rudimentary work at very minimal wages for disabled people. For many
disabled people, however, this still represents the only option for employment and a
supplement to their small pensions.
At the same time, legislation providing employment quotas has been passed at the federal
and local levels. However, in reality, it is has often been more economical for the
employer to pay a fine than to hire someone with a disability, pay them a salary, and
make minimal adaptive changes to the workplace. However, even this system is changing
with the passing of new legislation that requires that 3-4% disabled staff be hired at a
business that employs more than 100 people as opposed to the previous figure of 30.
Furthermore, as of January 2004, no fine will be required if you do not honor this quota.
Finally, many working disabled Russians will lose their small pensions of $50-100.
Consequently, approximately 85% of people with disabilities still remain unemployed,
few physical changes are being made to improve accessibility to the workplace and
accessible transportation is still scarce. For the unemployed or fictitiously employed
disabled person, social isolation and low self -esteem will continue to reinforce their
inability to gain competitive employment skills.
Access to Employment Project: activities and success stories
Starting in September 2003, Perspektiva began a project on access to employment for
people with disabilities. The project, funded by the Ford Foundation, was implemented in
5 regions - Moscow, Nijniy Novgotod, Samara, Toliatti and Rostov to motivate youth
with disabilities to seek job skills training and employment opportunities, while
promoting an inclusive access to employment approach in Russia amongst members of
the community at the national and local levels.
Project activities included leading seminars and trainings for young people with
disabilities, government officials and employment agency professionals, organizing job
fairs for people with disabilities, and working closely with the media to promoting an
inclusive approach to employment. During the project, more than 200 reports, broadcasts
and radio shows appeared on local and national TV. In addition, employment agencies
were organized in 4 cities. More then 5,000 people with disabilities participated in job
fairs, and thousands of people were provided consultations and over 100 people found
jobs. Working relationships with government officials dealing with employment issues
improved significantly. In Moscow alone, 35 companies / employers participated in the
last job fair. After seeing the productive and positive nature of a partnership with
Perspektiva or one of its partner disability NGOS, employment agencies have begun
negotiating with them to organize more disability employment outreach.
New project to address work-site accommodations and job development
The Access to Employment project helped identify problems and some of the solutions,
but most of all, it has demonstrated the enormous need for an agency or program that will
specialize in employment for people with disabilities. In 2005, Perspektiva, with funding
from the Ford Foundation, is starting a new project that includes activities more focused
on providing job development and career development services for young people with
disabilities, particularly, students. The project will continue to conduct pre-employment
trainings and consultations for employers and people with disabilities and will also
address the process of work-site accommodations and adaptations and job development
for individuals.
Back-handed Support for New South African Labor
Law?
By Mark T. Richards, ILRU Project
Given the fact she is an attorney and head of the labour law department at a large firm,
we'll give Susan Stelzner's motivation the benefit of the doubt in an article she wrote for
the Sunday Times in South Africa "Disability in the Workplace - Restrain that Axe-hand
and Stay Legal," http://www.suntimes.co.za/2003/03/23/business/news/news12.asp.
Attempting to educate South African businesses of new rights in the workplace for
people with disabilities, she seems more intent on protecting businesses from a new form
of pesky lawsuits than educating businesses on the beneficial aspects of providing equal
rights to persons with disabilities.
"The disabled enjoy new rights," Stelzner warns. "Changes to various laws have created
rights and opportunities for people who suffer (my italics) from disabilities . . . It is only
a matter of time before cases involving disability rights start hitting the headlines . . . ."
Though she does provide guidelines on resources necessary for businesses to implement
and provide protection of rights for people with disabilities in the work place, the tone of
Stelzner's article is defensive - businesses must protect themselves from the threat of
litigation.
For someone who seems so concerned about being "proactive," her article could have
been more constructive if she had approached the matter as supporting rights of
individuals rather than the more adversarial tone of protecting businesses from lawsuits.
One illustration used is that of an employer who is faced with an employee who becomes
"incapacitated: (hurt, or ill) and can no longer function according to the standards
required by the employer. "The employers aim," Stelzner concedes ". . . is generally to
terminate the employment of that person by reason of his incapacity - a ground for
dismissal recognized as valid by the [Labour Relations] Act."
Good grief.
Individual rights are couched in such terms as "reasonable accommodation can only be
avoided," and "a disability is a long-term or recurring physical or mental impairment . . ."
Only once does she even sound the least bit open-minded (and rather poetic) when she
starts the last paragraph by saying, "Far rather be proactive and seek to maximize the
benefits that can be obtained from creating an equal-opportunity environment in relation
to people with disabilities," but then she adds the warning "than be the employer of
whom an example is made in newsworthy litigation."
Probably Ms. Stelzner meant no bias, but it is this tone of forced inclusion that can hinder
the proper welcoming into the work force of people with disabilities and the vast
resources they bring with them.
Employment Briefly
Compiled by Jennifer Geagan (jennifer@wid.org), World Institute on Disability
Promoting better jobs for European workers with disabilities
To mark the International Day of People with Disabilities and help to ensure that people
with disabilities are given the opportunity to contribute to the social and economic
prosperity, the European Agency for Safety and Health at Work released a new fact sheet
on the workplace safety and health of people with disabilities. The fact sheet underlines
the rights of people with disabilities to both a fair and safe workplace and provides userfriendly guidance on how a practical application of anti-discrimination legislation and
health and safety legislation can benefit both the worker and the employer. European
Agency for Safety and Health at Work hopes it will stimulate workplaces to take positive
actions, and that this will lead to better jobs for workers with disabilities. The fact sheet
can be downloaded from the Agency website at
http://agency.osha.eu.int/publications/factsheets/53/en/index.htm.
Making Tax Time Pay for Americans with Disabilities
The January 2005 EQUITY e-newsletter focuses on taxes with articles, information and
resources to help taxpayers with disabilities make the most of their assets and the tax
credit opportunities available to them. The special section, Tax Laws and Asset
Accumulation for People with Disabilities, describes tax credits for individuals with
disabilities and businesses that employ and serve people with disabilities.
The feature article, "The TAX FACTS Solution: The Missing Link in Building Economic
Security for People with Disabilities," provides a personal narrative that frames the
details of the TAX FACTS Campaign and the essential role that it plays in the ability for
people with disabilities to build assets. To read this issue of Equity online, visit
http://www.wid.org/publications/?page=equity
U.S. Research Center seeks information on assessments for workplace
accommodations
The Workplace Rehabilitation Engineering Research Center identifies, designs, and
develops devices and systems to help people with disabilities be more productive in the
workplace. A primary focus of the Center is the use of universal design concepts -- the
design of products and environments to be usable by all workers, to the greatest extent
possible, without the need for adaptation or specialized design. The Workplace RERC is
currently doing some research on assessments that are performed for accommodations,
assistive technology, ergonomics, etc. in the work environment and are gathering samples
of all types of protocols, tools, and forms that people use. These do not have to be formal
or standardized, since they are analyzing the assessments related to what information is
gathered, how it is gathered, who they are used with, who uses them, etc. Please email
carrie.bruce@coa.gatech.edu for more information or to share resources. For information
about the Workplace RERC, visit http://www.workplacererc.org.
Governance & Legislation
Interview with Anne Begg, Member of Parliament, U.K.
Interviewed June 16, 2004 by Ilene Zeitzer. Edited by Hale Zukas
Q. What do you think has been the main impact of having you as a person with a
disability in an elected position of power? You had your disability before you were
elected, is that correct?
A. Yes, that's right. I've been in a wheelchair for 20 years. Since the condition I have is
genetic, I was born with it, but my mobility started to be restricted when I was 16. So I've
lived with my disability. I think that probably the biggest impact [of my being a MP]is
that it breaks the taboo, the taboo that says that if you're blind or deaf, you can't possibly
be a Member of Parliament. David Blunkett [Home Secretary] had broken that taboo
about blindness, Jack Ashley [Member of the House of Lords] has broken the one about
deafness. For me, if you've got a mobility impairment, then the myth is that you can't
hold down a very high pressure job. My constituency is over 500 miles away from
Westminister so I'm flying up and down every week. So it shows that someone with my
kind of physical impairment can still lead an incredibly busy life and do the kind of
traveling I do. You know, I'm just the same as anyone else, so there are no great
problems. So that's the main impact, I think; more than anything, it shows it can be done
and it's up to other people with disabilities to come in and do it too.
How disability experience has shaped her role as an MP
Q. Regarding the disability agenda, I saw that your Web site has references to a draft
disability bill and a report on employment for all. Do you feel that your having a
disability leads others to give more weight to what you have to say on disability issues?
A. When I was first elected, I was actually quite keen not to be seen as the disabled MP
and, if anything, I probably shied away from even talking about disability issues. First of
all, I tried to build a reputation for being an effective MP on behalf of my constituents
who are not disabled, but who are the people who live in my district in Aberdeen. So the
only way I could do it was by not becoming a mouthpiece for disabled people. I've been
very keen to avoid that label because disabled people are not a homogeneous group,
we've all got different views, different aspirations, different expectations and that often
one person can't speak on behalf of all disabled people. However, that having been said,
the longer I was an MP, the more I realized that obviously I had an expertise and a
knowledge that many others didn't have, and I would be doing a disservice to large
numbers of people if I didn't speak out from my own experience.
I do find that, especially when I speak on disability in Parliament, that people do listen
and do take what I say more seriously because it's grounded in a personal experience that
no one can really challenge, I suppose. And so gradually I have gotten more and more
involved in disability issues, and especially in the areas of social policy, particularly
getting disabled people into jobs. My interest is in social inclusion anyway, so, I suppose
in pursuing that agenda I've made an effort to speak out on behalf of disabled people, to
remind people that there are disabled women, for example. The reason I was in the
Chamber on Monday was to remind people during the debate on the domestic violence
bill that there are disabled women who have particular needs. These needs may not
necessarily have been addressed by the agencies involved because they hadn't thought of
disabled women as a distinct group that needs specific help, different from the help that
other victims of domestic violence might need.
Q. It has been a problem in the U.S., particularly for women in institutions or with
developmental disabilities who are quite often the victims of the people who are supposed
to be helping them.
A. That's right. And that is the point--it's very hard to get out of that situation when the
person who is the perpetrator of the violence is in charge of your care. And the bill that's
going through the House of Commons at the moment does talk about vulnerable adults,
and that would cover adults who have learning disabilities, but somebody like myself
would not be described as a vulnerable adult. Yet there's no reason, if I were married, that
I wouldn't necessarily be vulnerable to domestic violence as well. People from all walks
of life, who to the outside world might seem very competent, holding down an important
job and so forth, may still be victims of domestic violence when they go home. And how
does someone in a wheelchair leave a home which has been adapted to her needs? These
are the kind of issues I wanted to raise.
How Parliament relates to disabled Members
Q. Are you the first Member of Parliament who has had a disability?
A. No, the former MP, Jack Ashley is deaf. He was elected as an MP and then became
deaf, so he was the first deaf MP. He's now in the House of Lords.
Q. But he developed his disability after being elected?
A. I think he was elected first, yes. I'm not sure of the medical background, but I think he
must have been hearing at one time because the longest serving MP once said [in a
conversation we had] that one of the things he feels most proud of was when Jack
developed his deafness and was telling some of his colleagues that he thought he'd have
to give up being an MP, others said to him, "No, don't, you owe it to the deaf community
to prove that you can do it" so Jack stayed on as an MP until he retired and then was
given a place in the House of Lords.
Q. So you're probably the first person [in the U.K.] who had a disability beforehand and
then was elected to office?
A. Yes, I'm the first person to have been a full-time wheelchair user before being elected.
Now obviously, MPs can get quite old, and some have acquired disabilities through
aging, but I'm the first really full-time user of a wheelchair that's been elected to the
House of Commons. There are three with previously existing disabilities in the House of
Lords, but, of course, the Lords aren't elected. So I'm the first that actually had to face an
election and that was another taboo that was broken because people said, "Oh, they won't
elect someone who's got a disability." Well, I had no problem being elected. I've still got
a very marginal seat, and yet I have to say I think my disability is more likely to keep me
in my seat. It's been a positive advantage rather than any kind of disadvantage. The
people know me; they recognize me. I've got a nice short name as well, which helps. And
so I get publicity. We have a government with a huge majority, you know, so all of our
MPs are struggling to get any kind of recognition. But it's been really easy for me; I
haven't had to work very hard at all at getting publicity.
Reducing physical barriers in Parliament
Q. When you were elected, did they have to make any physical changes to the Chamber?
Was any of that a problem?
A. There wasn't a big problem. They had been gradually upgrading the building over a
number of years, I think, so by the time I was elected there already was access to most of
the main areas. One of the glories of the building at Westminster is the terrace along the
river, and that had already been ramped. I think the fact that there were people in
wheelchairs in the House of Lords also helped. Our House of Commons doesn't have a
sunken area; it's flat, and I just sit in the front row, so that wasn't a problem. But I'm now
a chairperson, I'm a member of something called the Chairman's Panel, and we're
appointed by the Speaker to act as Deputy Speakers on committees and things, and they
of course have platforms that the chairman has to get up on, so that was a bit of a
scramble because they had to come up with some ramps for me, but they've managed to
do it. They've got portable ramps that have managed to get me onto all of the platforms in
the various committee rooms. It's actually turned out to be easier to get onto the ramps for
chairmen than it sometimes was to get into the main part of the committee seating areas,
because our committee rooms have a lot of fixed furniture and clearances weren't quite
wide enough. It was okay when I was pushing myself around in my old self-propelled
wheelchair, but now I've got a big electric one that the House of Commons provided after
the last general election.
The other thing that happened was that the present Speaker of the House of Commons,
before the 1997 general election, was then chairman of the Ways and Means Committee
and, as such, was responsible for the physical aspects of the building. We met at a
conference in March of 1997, two months before the election, and he said, "How're you
doing? Is it likely that you are going to win? I said, "It's looking really good." And he
said, "Well, at the moment we can't do anything because there's a sitting Member there
but as soon as we have a better idea, will you write to me with a list of what you think
you might need, just so we can be forewarned before you're elected?" I had no idea what
I would need but I guessed I'd need an office quite close to the Chamber and close to an
accessible toilet. I also knew I would need a comfortable chair that I could get my feet up
in (I have an electric chair that I sit in to do my work). So I put as many of these things as
I could down on a sheet of paper. The first day I arrived after the general election, I got
shown around into this wonderful, huge office that most MPs only dream about. So I was
lucky in that respect.
Participation in Parliamentary committees
Q. Do you get to choose the committees you serve on, or are you appointed? And in
either case, do any of them reflect your interest in disability issues?
A. It's a bit of both. You actually get appointed. If you've been very disloyal and such,
then you're probably not necessarily going to get on the committee of your choice. But I
wanted to be on the Work and Pensions Select Committee, which deals with the
Department for Work and Pensions (where the Minister for Disabled People is located),
and so that was my choice and I got it. With regard to bills going through the House, it's
sort of common practice that if you want to sit on the committee dealing with a certain
bill, you just let the folks know that you're interested. There's no guarantee that you'll get
on it, but any time that I've expressed an interest in a bill with regard to disability, I've
always been appointed to the committee. And there's a group of us in the House of
Commons that have a particular interest in disability, so there's a group of us you'll often
find on the same committees.
Interaction with non-disabled colleagues
Q. What impact has having a disability had on your non-disabled colleagues in
Parliament? Do they come to you for advice on those specific issues?
A. Well, sometimes. A lot of them will have their own expertise as well. I think it's more
for quick advice that they'll come to me because they know I'll know the answer off the
top of my head. That's probably maybe more true of my Aberdeen colleagues because all
the constituency staff, we're all in the same office, so they'll nip through and say, "Well
how does the DLA (Disability Living Allowance) work?" because I'm more likely to
know that kind of information off the top of my head. But I would approach them in the
same way concerning any area of expertise they might have. I'm not conscious that many
of my colleagues come to me specifically with disability issues. They have to deal with
their own constituents because we have a practice that if it's a problem being faced by one
constituent, then the constituent's MP has to deal with that. They can't fob them off onto
someone else. That protects us all, and that's actually quite useful because people do
write to me thinking that I'm the Minister for Disabled People and say, "I've got a
problem getting my car parked outside my house, what am I going to do about it?" Those
kinds of issues I pass back to their own MP because it's up to them to deal with it.
Weighing in on broader issues
Q. What about broad based issues, you know, transportation across the board for all of
the UK? Is there a thought that they should come to you and have you weigh in from your
perspective?
A. Sometimes, but not too often. I think that depends on the issues. As I mentioned
earlier, I was speaking on domestic violence the other day. Now that's not an issue I'd
been involved with at all until one of my colleagues suggested we address the problem
with regard to disabled women. But I hadn't even thought about it. And so she passed on
the information she had and then I got my Member staff to do some more research on my
behalf. So I was involved in that debate at the suggestion of one of my colleagues
because she knew that my speaking on that particular subject would give it a bit more
weight. So that does happen.
But a lot of the briefings and the help we get comes from various charities and lobbyists.
Well, we don't have lobbyists the same way that you do in the States, but for example,
take Bert Massie, the Chairman of the Disability Rights Commission; his office will
always provide us with briefings on these kinds of issues. Their Parliamentary Officers
will write to me and a number of others because they know we're interested if they're
looking to get someone to put down an amendment or a motion or whatever. There are a
number of organizations that know that I'm a sympathetic MP with regard to getting
issues addressed, and that helps me as well because that gives me a source of
Parliamentary work, too, so, it's mutual support. But, professional lobbyists, no. We're
really very unprofessional lobbyists in this country, it's organizations or charities who
will have their Parliamentary Officers and things like that. They are a very useful source
of information for us because they know, they can give us case examples and they're
extremely useful in keeping us well informed. Part of the way our democracy works is
that any one of my constituents can come down to Westminster and lobby me. That's the
way it's meant to work and unfortunately because there's big business and the paid
lobbies have got in the way, it's become a bit sullied. But it still works in the way it's
meant to work with the organizations and the charities.
Major areas of impact
Q. Do you feel that there's been quantifiable progress in certain areas of concern, such
as employment or education, for people with disabilities? Can you point to achievements
in that respect?
A. Yes, it might be useful if you've got access to the Internet to go on to the House of
Commons Parliamentary Record (www.parliament.uk), the Hansard, for last Thursday,
that's the 10 th of June (go to "Comments" section, first two hours not on disabled issues,
but after that all discussion is on disability). There's a whole debate about disability and
you get the whole history of what's happened with regard to Parliament and disability,
and I contributed to it...Our first disability law was enacted by the last government with a
notable lack of enthusiasm, and it had all sorts of deficiencies, such as a lack of any
enforcement mechanism. So the first thing we did was set up the Disability Rights
Commission so that we could actually enforce the rights that the 1995 Disability
Discrimination Act (DDA) created. But there were all sorts of areas that were left out:
Education was one. We plugged that gap with the Special Education and Disability Act, I
think, in 2000, that basically brought education under the DDA and it also set up how we
would deal with people with special educational needs, as well. That provision only
applied in England and Wales, but not in Scotland, which has recently been granted more
autonomy in the area of education. The other provision (bringing education under the
DDA) applied throughout the UK (although the Scottish parliament is still responsible for
deciding how that mandate will be carried out in Scotland).
Goal for immediate future: more focus on employment
Q. As far as your personal goals are concerned, what do you want to do to achieve those
goals, particularly your goal of improving the quality of life for people with disabilities?
A. At the moment, we're expecting a general election next year [in 2005], and getting
reelected is one of my personal goals, so, because I have a marginal seat, I have to keep
working on that. Currently I'm putting a lot of effort into getting disabled people into
employment and trying to lower the barriers that are keeping people out of work, as well
as making sure that workers who become disabled are either given another position by
their former employer or helped to find an appropriate job elsewhere instead of
automatically being told, "Sorry, you're not well enough to do this job so go off and live
on benefits for the rest of your life." I find that totally unacceptable. So it's about
rehabilitation, occupational help as well as getting people who have perhaps worked in
the past but who have been sitting on incapacity benefits for years and years. You know
they might have had a bad back 15 years ago, and now their back is alright but they're
clinically depressed because they haven't worked for 15 years. So it's about trying to
build up their confidence and getting them as much support as we can to get them back
into the job market.
Initially people in the disabled community were very suspicious (of efforts to get people
back to work). They thought it was just about government trying to get people off of
benefits in order to cut costs. But they've been generally won over, provided there's no
coercion and it's done in a sensitive way and the support is there. That is happening and
more and more people are getting jobs; people themselves are the best indication of
whether the system is working or failing. I've been to a number of conferences and
seminars to persuade employers to take on people who are presently on incapacity
benefits, and the most poignant stories have been from people themselves who have
benefited by getting back into the workplace. They describe the feeling of wellbeing that
they get from again being back and part of society. So, it's still got a long way to go, but
we're not running away from it.
I've been in Holland looking at the things they've been doing and they've got a big
problem in the numbers that they have. They almost are putting their heads in the sand
and pretending it doesn't exist. But I think there's a huge social cost in just leaving people
on incapacity benefit just because they can't do the job that they were in before. We had
very high unemployment; over three million, and it was easy for the government to
massage the unemployment figures by shifting people off of unemployment benefits and
onto incapacity benefits.
So the numbers of people on incapacity benefits at that time went through the roof and
the numbers of unemployed did come down by a lot. It was quite a cynical political ploy.
That group of people are still sitting on incapacity benefits and I say, true, they might not
be fit to be a miner or a shipyard worker anymore, but there were plenty of other jobs
they could have done had they been encouraged to at the time, but now they're clinically
depressed. So, it's not that they're not ill, or that they're not disabled, they most certainly
are, but because they've been out of work for such a long time, it's far, far harder to even
persuade them that there are employers who might want to take them on. They [disabled
persons] ...have gotten used to living on a very low income and not doing any work. But
they could be doing all sorts of other things. So it's about saying, "Yes, there's something
you can do" but, at the same time, not appearing to coerce people, because otherwise the
headline is "Sick and Disabled People Forced to Work." It's not the kind of headlines the
government wants, but sometimes, it's about getting the balance right. You sometimes
have to coerce people a wee bit more to build up their confidence and say, "Well, why
don't you try it?" But, as I say, there's still a long way to go, but at least we're moving in
the right direction.
But we've probably gotten more generous with our welfare system anyway. But we've
also changed it; we've given people a year's leeway. In other words, people can get back
on benefits at the same level they left if their attempt to work falls flat. We've also got
something called the Disabled Person's Tax Credit, the "working tax credit" that ensures
that people are better off in work. Part of the problem for disabled people particularly is
the benefits trap. The level of our benefits was high enough that if people went to work
and lost all of the benefits, they were actually worse off, so we're trying to deal with that.
We are piloting 40 pounds a week that we are giving to people for the first year in work
to try to get them to try again, get them over that poverty trap and make sure that if they
are going into work they are actually better off. But some disabled people have very
complex care and benefits packages that they build up and they don't want to rock the
boat. If they fall out of the system at the other end, it takes them three months to get the
housing benefit back, for example, and that can be really worrisome for them.
Mental illness is actually becoming the disability area of most concern. We've actually
gotten quite good about getting people with physical disabilities, and even people with
learning disabilities, into work, but I don't think we're well equipped to serve the needs of
those with mental health problems; the solutions needed by somebody with a mental
health problem are totally different from those needed by a person who's got a physical
impairment. I think this issue is going to become more serious as the number of claimants
of incapacity benefits who have mental health problems continues to rise. But it's
something we're going to have to face in the next 10-15 years.
Building expectations of a society for all
Q. What are your thoughts on how to make government more attractive to individuals
with disabilities and how to promote the need to create a society for all?
A. I think if there was an easy answer to that, more people would be doing it. I think it's
becoming easier simply because people with disabilities are now accessing mainstream
education, they're growing up in mainstream society, they have expectations of getting a
job. So, it's just a matter of time when more disabled people have expectations that are
the same as other people who want to be politicians. I'm not against affirmative action,
but I think it's important that people get involved who really want to get involved, rather
than being forced into it; I don't think that that would work.
The best hope is that because we have changed society, people with disabilities will now
have expectations of doing what other people do. We must make sure that barriers do not
exist within the [political] parties themselves that actually prevent people with disabilities
from putting themselves forward and being elected. The electorate will elect somebody
with a disability, that's proved, that's happened. So, it's not a barrier to being elected. The
barrier is getting to the first stage, which is to become candidates for some of the main
political parties. It's up to the political parties to get their own houses in order. It's up to
those of us who are in politics to encourage others with disabilities and it's up to the
political parties not to discriminate against them in their selection process.
Interview: Meeting the Challenge of Starting Over in
Mexico
Interview with Victor Hugo Flores, Office of Representation for the Promotion and
Social Integration for Persons with Disability, Office of the President, Mexico
By Ilene Zeitzer
Q. Please talk about the office that you're the head of in the Office of the President. This
is a new office with President Fox, is it not? So please describe how it works, what it was
set up to do, what influence it has and so forth.
A. Yes, the official name is the Office of Representation and Social Integration for
Persons with Disabilities. In the year 2000, when President Fox invited us to work in the
Office of Persons with Disabilities, he decided to take advantage of the momentum by
creating three different smaller groups within the Cabinet. One cabinet is for social
matters, another one is for security, and the other one is the economic cabinet. The
correct name is the Human and Social Development Cabinet. It is the one that contributes
the most ministers or secretaries in this area - he created 24 different ministries in
different areas involved with certain aspects of administration. Once a week they have a
working meeting. In each of these meetings, there are at the table, ministers and also the
head of 16 different offices, specifically created by President Fox to coordinate policies
over specific issues.
National Council on Disabilities created
In the beginning, President Fox spent at least one hour with each of us and we were asked
to develop a master plan. In those meetings we had the responsibility to present what we
were going to do, how we were going to do it, and with whom. Our office, the office that
coordinates public policy towards disabled people, asked in one of these meetings that
each ministry develop one specific program including or focusing on disabled people.
There is a very close relationship, between President Fox and the Office of Persons with
Disabilities. President Fox also had a very close relation with different ministries, but
mainly with five specific secretaries: the Health Secretary, the Labor Secretary, the
Education Secretary, the Communications and Transportation Secretary, and the
Secretary for Social Development. As a matter of fact, within two months, my office
created the National Council on Disabilities in which these five ministries are members
and support it.
Q. So, the Ministers of Education, Communication and Transport, Labor, Social Affairs,
and Health are all part of the National Council on Disability?
A. Yes. Each Secretary is assigned a specific Vice Ministry so they can operate or be
responsible directly for the operation of this National Council. With these five Ministries
or Secretariats we developed inside the Council five different programs that didn't exist
before. We created a program for prevention and rehabilitation inside the Ministry of
Health for all the national health system. The health system in Mexico is composed of
five main institutions: the Social Security Mexican Institute; the Social Security for the
Workers of the State i.e., federal workers; the health system specifically for Mexican
Petroleum (PEMEX); and the health systems for the Navy; and for the Army. In this
health system, we are trying first to create a system that enables doctors to become more
aware about disabilities and how to prevent disabilities and also to ensure that the
hospitals are accessible to disabled people. In order to develop this strategy we created a
specific council inside the health system, namely the National Council to Prevent and
Rehabilitate Disabilities. And there is also a head person responsible for each area of
health who was given the responsibility to develop a plan for the next six years. The main
strategy of the office was generally not to create or develop brand new programs, but
instead to assign to each Ministry the main function that it should have and to work with
them to resolve the issues or areas. For instance, we decided that we were not going to
develop anything [new] regarding health or education, but rather that we would
coordinate with the Ministry of Education so that they should become directly
responsible for disabled people's education policy.
Latest focus: self-employment in rural areas
Actually, now, three and a half years later, we have stopped creating new programs. We
already have each program in place now, so we are just following up on each of these
programs that we created within the National Council, with the health area or the
education area and people with disabilities. As a matter of fact, we created not only five
but seven national programs. The last program that we developed was launched on
September 5, 2003 and it was a rural area program to support persons with disabilities.
This program comes with a change in the law for the specific Ministry that handles all the
rural area and agriculture area and the Congress assigned to this specific program about
$250 million. This program we are promoting is for the persons with disabilities that live
in rural areas -- small areas in the country. It provides training, it provides technical
support - the ministry pays someone to give training and also pays for an office to staff
technical assistance to specific projects and to buy equipment.
Q. This training is for employment or this is all kinds of training?
A. It is a specific training, in order to create abilities in people to develop their own
project. So they submit a project, and so they say, for instance, "I want to grow
mushrooms. But to cultivate mushrooms, I need this. But I never had anything to do with
mushrooms [before]." So they are given specific technical assistance, they train them
how to grow mushrooms, how to grow the business and be accountable, how to develop
the technology so they can meet a specific ambition.
Q. So skills development?
A. Yes, but this project not only supports agriculture for livestock and other types of
farming, but also supports projects in skill development in services, starting a shop, or
another type of enterprise, any kind of job development.
How new programs are being set up
Q. So this is all through the Council that you have created? The funding comes through
the National Disability Council that has been created, is that right?
A. No. Each ministry comes with us to the National Council, and at the National Council,
I think we missed that, we have 10 different working groups so we can sit down with
people with disabilities, Disabled People's Organizations, Non-Governmental
Organizations, specialists, and specific people at universities also, company people and
people from each Ministry. So the organizations and persons with disabilities say, "We
need job opportunities in the rural area." We start with one working group, "what do you
need, how do you need it?" With this group, people will create a specific program and so
the representative of the Ministry says, "Here we have this proposal for a program. In
order to do it, we have to change this, and this and create this." So they talk about it and
figure out what they have to do, then they do it and they announce that they have a
program. Then the Ministry does what they have to do in order to get the results that they
need from Congress and then they start applying the program.
Q. So you actually influence the programs the various Ministries create?
A. Yes.
Q. But you're not creating the program per se you're going to the Ministry of Education,
the Ministry of Agriculture or whatever and saying, "We're told by the disabled people
organizations that you need to create a program that trains people on how to operate
their own shops (or whatever it is)"?
A. Yes, exactly, that is one area where we are active. But, we are also trying to get all of
the objectives moving toward the same goal or place. Prior to the creation of our office, a
lot of things were being done for disabled people, but everyone made them or created
them without any common objective. Now with the new office, we have told them that
we are creating a common objective -- social integration of disabled people on the
grounds of social development, not just on the basis of health matters or assistance.
Research and studies?
Q. Do you do any studies? Do you actually commission any research studies or anything
of that nature?
A. We do not have the economic resources to hire the staff to create a specific study or
investigation. But, if anything is working we try to take advantage of it, what isn't
working we see if we can create something new or try to reshape it. So there were
different studies that were being done through the years. For instance, in the Education
Ministry, we had an agreement with the Spanish Government and they gave funds
between the Education Ministry of Mexico and the Spanish Government to create a
national investigation. When the results were ready, we came along with the Council, we
invited the Education Ministry and then we consulted with all the Disabled People's
Organizations and Non-Governmental Organizations about the results and the focus of
this specific proposal or program. We are taking considerations in education, particularly
in special education and in disabilities. And that's what we are trying to enhance, but you
have to take into account that we are a transitional government, so a lot of things that
were done in the past were kind of too complicated to be taken again. Because, for
instance, the person that coordinated the entire educational area for Mexico in the past,
she was the head of the Mexico City area, and somehow politically she became a very
powerful person and developed a lot of strategies, but she was at the same level as the
State Education Secretary. So now we have a new law, a transparency law that says that
we should do what the law says, not what is convenient politically. So we developed the
program and now all the states are working together with the same objective.
Another thing that we do is those responsible for each program ask us for specific support
to talk with the Minister or the Secretary to resolve issues, in the development of a
project or to start a new activity. Those responsible for this program, although it is a very
important program, do not always have direct communication with their own Secretary,
they are on different levels. One of my main tasks is that I can open the channel because I
am the only one who is on the Secretaries' calendars. I speak with the Secretaries every
week, every now and then I have in person meetings with them, so I learn what's
happening with the program and report directly what's going on. I help with that by
internal lobbying, with solutions.
Impacting policies: three different 'moments'
Q. Can you point to some ways in which the creation of this office has changed policy,
impacted policy?
A. Yes, we can see in Mexico three different moments. The first moment was when the
public council for disabled people was created, or funded, as social assistance. The
second moment was when the office, the social assistance office, started creating and
assigning specific problems to different ministries so that the public policy for disabled
people is not only the responsibility of one area as it used to be, but is in different
ministries. So it's a very balanced strategy, not a burden, but a strategy and task among
different ministries. Our concept specifically now is that the public policy towards
disabled people cannot be solved by only one institution, as in the past, now we can
assign a specific task and strategies for different Ministries so we can come up with a
better and integrated solution. The third moment that we see in the future of Mexico is
that these programs should become long-term programs and that Mexico shall have a law
for disabled people. This concept will guarantee that each Ministry will not have isolated
efforts to deal with disability, but integrated and coordinated efforts and strategies, plans
and programs for the long-term. In this scenario it is quite possible that this office will
disappear at some point because it will have done what it was meant to when it was
created and it won't be needed anymore.
Interview: Judy Heumann, World Bank Advisor on
Disability & Development
Interviewed by Ilene Zeitzer
Q. What do you feel is the impact you have had as a person with a disability on the
governance process, using your experience at the Department of Education and now at
the World Bank?
A. It is very clear that, like in gender, where women, just by their presence, played an
influential role in changing policies and practices and the views of governance
components of organizations and the day-to-day operations of organizations, the same is
true in the area of disability. So even if you don't have a job which specifically focuses on
disability, as I have always had, there still is an effect that is gained by having disabled
people working in any sector, whether it's public or private. However, it's also true, I
assume, that in the early days as women began to move into positions of responsibility
but were clearly still in a minority, they had to be constantly aware that they were
breaking new ground, were under extra layers of scrutiny as representatives of their
"group" or minority...
I continually have felt that there is a major difference in being based in a large institution
like a government department or the World Bank family, as opposed to being in a
community-based, disabled-run organization, because in both these jobs there hasn't been
a day that goes by where I'm not reminded of the fact that in addition to whatever my
workload is, I'm also trying to deal with in a broad, comprehensive way, the inclusion of
disabled people into the work of the federal government, into the work of the
international community.
Can I go across the street?
I have to make the observation that even in 2004, people are still at a very baseline level
of knowledge about disability.
Today someone called me about a meeting that was being set up, and there are going to
be a number of people from the Bank invited to this meeting. The person who called me
said, "Can you come to the main building?" For a second I thought, "I think this woman
is here in DC and I think the main building is across the street and I go there all the time."
And I said, "What building are you talking about?" And she said, "The MC building."
The MC building is diagonal to my office. So I said, "I go there all the time." But I use
this as an indicator of how people's lack of exposure to those of us who have disabilities
is so significant that people are still continually thinking that they have to compensate, to
come to me because I can't go across the street, when in fact in my motorized wheel
chair, except for steps, I can go any place that anybody else can go and I can go faster
than they can go. But they don't see that.
So here I am trying to look at developing intricate policies and budget issues, etc. and
they're still trying to figure out can I go across the street?
And this is perhaps where the gender parallel differs to a significant degree. Because
people's views of what women may be able to do or what they should be doing is or was
certainly not the same as what many believe or believed men could do, but it was never at
the level of, "Can you come across the street?" And this is true whether someone is blind
or deaf or if they have a cognitive disability. People don't distinguish among disabled
people who might have difficulty getting across the street from those who can accomplish
that easily. For instance, if I had a manual wheelchair which I couldn't push myself, if
someone asked me, "Can you get across the street?" I would think, "Oh, they're
observant, they noticed that I can't push my chair well." But this person has seen me
zoom around. And this is not an exception. When I first came here and I was going
around and meeting with the senior leadership of the Bank, going to their offices, in the
beginning, the schedulers would say, "So-and-so will come to your office." I realized,
having worked in the federal government and understanding pecking orders, that vice
presidents don't come to advisers, advisers go to vice presidents. Once in a while, a vice
president may want to kind of slum it and come around to offices, but as a rule that's not
what they do. So I finally just had to say to my staff, "I will not have them come to my
office, period. They need to see that I can get to their offices."
The constant challenge of low expectations
It takes time. This awkwardness and level of low expectations existed at the U.S.
Department of Education too-especially where people hadn't worked with a disabled
person, or they hadn't worked with a disabled person at an equal level. I was at a senior
staff meeting at Education once, it was the first couple of months I was there, and one of
the senior staff was saying, "Give me some information on a particular potential political
problem." And he/she said, "And if we don't do this, we'll be cut off at the knees." And I
said, "And then you'll send them to me for services," because I administered the
rehabilitation office. One person who had a hidden disability laughed but the person
chairing the meeting said, very embarrassed, "I'm sorry. We're still learning the
appropriate language." And I literally put my hands like a time-out and I said, "I was
joking!"
But I say this in relation to governance issues because we fail to realize that we have an
urgency to make changes and we have to figure out how we also begin to allow people to
feel comfortable not only with those of us who are their colleagues (and comfort is
maybe the wrong word but there is a truth about the issue of comfort - also with gay
issues and others) but also for people to really be able to see that you have the same goals
and aspirations as they do, and the groups that we're working with or for have the same
types of barriers and opportunities as others. And I think that's one of the biggest
challenges. I was at Education for seven and a half years and it took a while before
people outside of my office really accepted me for who I was, and could listen to what I
had to say in an equal way and agree or disagree based on the substance of the discussion,
and not based on their feelings about how what they said or did would affect me.
Necessity of investing time to gain trust and position of equality
Q. Do you think that they actually held back because they were afraid of how you would
react?
A. They might have, or they were more negative. Another thing that I experienced when I
was first at the Department was everybody at my level of job was in part brought in
because they were an advocate, they were a civil rights advocate or a union advocate, a
women's advocate, they were proactively working on a position which the administration
agreed with and felt that they represented an important constituency and they wanted
them to be a part of the team. Early on, within the first six months I believe, the
Department of Education was holding satellite meetings with the Secretary once a month
at the Chamber of Commerce. I didn't go to the first meeting; I went to the second one.
When I got there, I had no idea that the place wasn't accessible from the front entrance, so
I had to go in through the kitchen, and I was mortified. So at our senior staff meeting the
next week, I said that I didn't think it was acceptable for us to be holding our meetings at
the Chamber because it's not accessible, and there was not a lot of support for my
position. I guess because we were given the facilities for free.
They did eventually put a ramp in the front so that we were able to come in the front
door, but the story is as follows. A couple of weeks later there was a piece in The
Washington Post about a group of disabled people that I didn't know and still don't
know, who had a demonstration outside of the Chamber of Commerce protesting the lack
of accessibility. And I was called in by the Chief of Staff to ask me if I'd seen this piece,
which I had. Gradually I realized during the course of the discussion that he thought that I
knew these people and that I had put them up to demonstrating outside the Chamber of
Commerce. And I remember that I realized that he was not presenting me with
information, just pointing out, "Isn't this interesting?" but not directly suggesting to me
that I was responsible for this. I said to him that I had no idea who these people were. I
said, "I didn't know anything about this until today, I think it's great that they did it, but I
don't who they are." And I made some kind of a comment that I hoped that he got rid of
any preconceived notions of what I did or didn't do. There was this sort of litmus test that
I felt in the beginning. But then over time it went away and people got to know one
another and realized everyone was on the same team.
So governance for people who are coming in on a new issue, like disability, is difficult
because you have many, many issues that you have to address at the same time--only one
of which is the substance of the particular issue. Equally important is really allowing
people time and space to accept you and to be willing to respect you as an equal person.
Once they do, then they can hear the issues you are raising more appropriately. But if
they don't, then they frequently will think that there's an ulterior motive behind what
you're saying. So, the more disabled people, the more women, gays/lesbians, whatever
the particular group is, can come in to work in whatever the entity is, the more people
will see 1) that everybody is different, 2) that we can have a particular objective in
relationship to the way we believe policies and practices should be occurring. But they
also can begin to realize that they don't have to be afraid of us for what we stand for and
that we can be challenged like other people and our ideas aren't necessarily good or bad,
they're not good because we are whatever we are; they're not bad because we are
whatever we are. And I think that's a very critical issue.
Even in rich countries, what we already know isn't always applied
Moving our issue away from being a marginalized issue is very difficult, and one of the
big problems I think also is particularly in addressing a new issue, which disability is even in developed countries, it's still a relatively new issue. So even as you begin to get
people to agree that what is happening is wrong, then they want to know how to fix it and
in too many cases we don't have a quick answer. We do in things like accessibility, but
not in every aspect. In developed countries, the answer is yes, we know what to do. But
even when we know what to do, it's not always done.
For example, a staff member just came back from a meeting of the Bank in Paris and they
had a meeting not in the Bank building but in a brand new French building that wasn't
accessible throughout the building. We had disabled people going to the meeting and
when they went and did a review of the building, they had to build ramps in parts of the
building for the person in a wheelchair who needed to have access to different floors. So
you can't even take for granted that in new construction in wealthy countries --things that
we have known how to do for decades --are actually being done right. Or the statement
that is still made the world over: "We don't need to put a ramp into the school because
there are no disabled people who go there."
But I think what's also important about whatever particular group today disabled people
are moving in is that we can then get other people who may be affected by disability or
not to argue our points, and I think that's also where we gain legitimacy. When the
women's issue is argued not just by women, when the disability issue is argued not just
by disabled people, then I think we begin to see these issues become more mainstream.
Ultimately, most issues can benefit from a disability lens
Q. Do you see people looking to you for advice, both in this job at the World Bank and
when you were at Education, on issues that go beyond the issue of disability per se?
A. I don't exactly know how to answer that because in part what we've been saying here
is every issue should be perceived of as benefiting from a disability lens. In the end we
may not prioritize that we can do everything, but any office in the Bank should ask if
disability is a component of the work we could be doing here.
For example, I met with the infrastructure people. There are a series of issues they are
working on. Maybe one of the issues they were working on didn't really deal with the
issue of disability, building dams or something like that, but of the six issues, five are
related [to disability]. Then the question is can you do all five at once? So one of the
things we talked about is, all five could benefit, but let's start with one or two things so
that people begin to get a better understanding of what we mean when we say to include a
disability lens, so that people can begin to learn by experience what to do. So, yes things
are slowly but really happening here.
I'll give you an example. Today I went to hear a presidential lecture, for HIV/AIDS day
and a staff person from Ethiopia came up to me and said, "I want you to know that at the
meeting this morning with the regional vice presidents the issue of HIV/AIDS and
disability was raised." I was very excited because I wasn't at the meeting. So that means
that the person from Ethiopia who was there at the meeting had conveyed the message
that in Ethiopia the intersection of HIV/AIDS and disability is important. There's funding
going to it and they wanted acknowledgment of it. So I'm seeing that in numbers of
places.
Yesterday I was at another meeting where they were laying out the agenda and somebody
said, "Where's disability?" and I almost fell out of my chair. So I'm actually pleasantly
surprised, given the few disabled people who are here at the Bank, that disability is not
always being looked at only because of our instigation.
We're getting more and more phone calls, you know, "There's a transport meeting going
on, could we participate in the meeting?" There's a "this" meeting going on, could we
participate? -- things that we didn't know about. Now there are plenty of other things here
we should be invited to or included in, but we're not. None the less, it is getting better, the
message is getting through. I really don't want to exaggerate it, but I do want to say that
people are slowly recognizing that this is a credible, intersectoral issue.
Continual education on disability issues paying off
Doing all this education about disability is starting to pay off in a number of ways.
There's a disabled women's reproductive health project going on in India, supported by a
Bank grant applied for through the usual channels. Someone I know just came back from
Hanoi, reporting to a conference that they are tearing up the streets and adding curb cuts.
I was there a year ago and there were no curb cuts.. Now what was good about that is that
I've been saying in the Bank, if we're concerned about economics, we have to be
concerned about spending money wrong. Whether it's our money, or a donor's money, or
even the government's money, we need to be saying that building streets inaccessibly is
not only wrong, but it's going to cost money and as disability groups become more
powerful, like in Hanoi, they are going to require that money be spent on retro-fitting.
There is a push now on to recruit disabled professionals into the Bank. They're bringing a
consultant on to actually look at what to do in order to do that. The president is really
pushing that whole issue with junior professionals and volunteers on up the ladder. If we
had 50 (or even 10 or 20) disabled people working at the Bank who were not only
disabled but also understood the bigger picture, it would make a real difference. What I
say to people at the Bank is that we're looking for people who are knowledgeable about
disability in whatever the particular area is that we're hiring. Yes, we would like to bring
disabled people in. We also want to bring non-disabled people in who understand the
substance of the issue. But it is really important, when you sit down at tables, to have
people who can say how disability fits into a particular issue. So, on the staff survey this
time there are questions on disability, the questions are not good, but the questions are
there. There is still too much medical stuff that goes on here. Disability is too focused in
the health unit still, but nonetheless it's improving.
The Department of Education did these 3-day seminar series in three or four cities every
year on education. In the beginning, it was just being done on the Title 1 education laws,
which didn't include disabled people. We started by saying we would like to be included.
What happened over the 8 years of the Clinton administration is that disability became
completely mainstreamed because we devoted a staff person to work on the issue, we got
our regional technical assistance centers involved and they took on a big responsibility.
So what happened is we had parents with disabilities that came to the workshops, we had
academics and teachers and others who came. We didn't just do disability lectures or
workshops, we did disability integrated into regular activities. I hear those aren't
happening anymore, though.
I believe what's very important in all of this, is that we have to have a very strong
disability movement at the national level, at the provincial level, and the county and city
levels, or village levels, because it is that healthy tension which exists between the
community and the public and private sectors which really can help advance an issue. It
has to be that the entity believes that if it doesn't include disability, something negative
will happen. Whether they think it's a big or little thing, is an issue. But once you get
inside, it's also then to be able to really show how this can be mainstreamed. And in a
case of development or working in the government, it's to really show how the
organization cannot achieve its identified objective. So in the case of any of the UN
families, the Millennium development goals will not be achieved if disability isn't
effectively mainstreamed. Now at the moment we are absolutely not effectively
mainstreamed. And we have until 2015 for this to happen. So my assumption would be
that at some point, people will begin to realize that this is an issue.
New Bank report on lack of disabled children in school
In the Education sector of the Bank they've developed a document which says that
basically of the 105 or 115 million children not in school, 30-40 million of them are
disabled. That's a very big deal, that the Bank is willing to say that this is a problem, and
if it is not addressed, then they are not doing their job. This makes it easier for us now to
be working with this office , brainstorming and looking at projects to develop and getting
some funding to be able to move some of the research forward in the country on local
levels. At the same time, it now becomes easier to give legitimacy to the disability
organizations at the international and national levels that are working on this issue. Now
in saying that, it will take years to make real progress and it will never happen if the
driving force is not also at the local level. So the question is how to ensure that this
happens, how do we transfer this driving force to the local levels.
What I found at Education was that the more I could get the Secretary and the Assistant
Secretary to meet with disabled people, to visit programs that included disabled people or
parents, the more they began to see how this was a part of their work. But again, it's not
like one discussion or one visit will do the job. If you have somebody on your staff who
continually works on the issue, like when I worked at the Department, I had two people
on my staff that I consciously brought in because they came from minority communities.
That was my commitment to myself that in my special staff, I would bring people in who
represented racially diverse communities. Because I knew that with the best of intentions,
if I didn't have people that would continue to come to me and say, "What about this? You
didn't do that," I would make mistakes. And it wasn't that I was consciously not
remembering things, but I couldn't remember it all or I couldn't do it all. So that's again
why I think, looking at the issue of diversity, from a disability perspective, cuts across so
many slices. And we have to be able to bring in all these different levels and help educate
all of us, not only about disability but the substance of the topic and what we have to
learn and how to encourage people to put money into things when they are given 10
problems, and we can only deal with three of them, why should we be dealing with
disability. And to try to get them to see that this too is a mainstream issue.
View of disability a cultural issue?
Q. What is the Bank's response when people/governments say that not accepting people
with disabilities is a cultural issue?
A. That's exactly one of the points that I think is very important. You have to, in my
view, do a number of things. You have to have people at the local level who can say,
"This isn't true" or even it is true, "This is not the right approach, and therefore we have
to work for change." And again, looking at gender as an example, historically girls didn't
go to school. Why did girls need an education? Then you began to have girls go to school
and you began to get this data showing the importance of girls going to school and all the
other indicators that changed as a result of girls going to school. So, here it's to be able to
say, "Yes, in point of fact today there may be parents who don't want to send their kids to
school because they have a disability and they don't want their children to be mocked and
there may be kids who are doing that." And there may be parents who don't want disabled
children in the school, but do we really believe that's the right policy and what should we
be doing to address it? So it is true in many of the countries that we deal with, there is a
friction around it. But on the other hand, it's also a fact that that friction has existed
everywhere, on multiple topics, and you just have to move forward.
Collecting hard information
So, I think it's learning by doing and working to learn about, collect hard information
about examples of places where things have been done differently. In the development
context, sometimes it's showing examples from more developed countries. In India, when
I was there earlier this year, they had some wonderful projects. Every country now has
great disability groups and when you sit down and talk with those groups and you get the
Bank or government to sit down and talk, they're the ones that have to push the agenda
forward. We didn't have a law in this country that said you couldn't discriminate in the
area of education until 30 years ago so it's not that we're this great role model. We're a
much newer country and we don't have all the history of religious discrimination, etc. I
personally believe that in African countries where disabled people are becoming a part of
the entire governing structure, that if they stay on target with the democratization that's
going on, disabled people will proportionately do better in those countries, quicker, then
we have in our country because our barriers, while no longer being legal, are so very
pervasive.
New African models intriguing
For example, the new African models that say disabled people have to be involved in
every point of influence is so not true in this country, so that you can see the difficulty in
influencing day to day activities. Here, there aren't many disabled people on city
councils, there aren't many disabled people on county boards, there aren't many disabled
people that are on committees and commissions, there aren't many disabled people in
state legislatures, in the federal government. The few that are there, they can't just be
arguing disability. They aren't there just to do that. They're there to govern, and only one
component of what they are doing is disability, or gender, or whatever else. But when
there are so few people, that's part of the problem. I mean, I've never spoken to U.S.
Congressman Langevin about these issues, but I'm sure when he first came to Congress
he had to be dealing with some of the same issues.
When I ran for city council in Berkley, I had a guy who was working with me on my
campaign who told me that I needed to be careful about the way I went from the audience
to present myself in front of the group to speak. I had to be careful about the way people
saw me move. I'm sure the same was true with Langevin, too. You have to worry about
so many things. Not just what you're saying, but how you look and how you are. It's the
same thing for the first women that came in. But at the end of the day, the more people
we have in every level of governance who have disabilities, not all who are going to
agree on positions on issues, but the more it becomes a normal part, an everyday
happening, then the more we can move on and deal with the real governance issues:
budgets, policies, practices, etc..
Engaging with the next generation
I think it's very exciting to see what's going on with the UN Convention and all these
different things, and I absolutely know that I'm going to die with the world being a better
place than it was when I first had polio in the 1950s. But the reality is, in the richest
country in the world, I'm still going to live in a society where most people's homes are
not accessible, where in point of fact, while more people are beginning to understand
disability, but as I go down the street everyday, parents will look at me and still say to
their kids, be careful, watch out and try to pull their kids away from me. And I always
talk to kids, because it embarrasses parents. They don't know what to do, because the kids
will engage, most of them. And to me, getting the next generation to recognize that
disability has to be integrated into what's happening is what is important.
Interview: Lex Frieden Assesses Impact of National
Council on Disability
Interviewed by Ilene Zeitzer
Background
The governance project looks at the effect of having people with disabilities in positions
of government and what impact, if any, that has. Part of the project also looks at the
various national bodies that effect disability policy, whether the entity consists of
appointed members or whether it's an umbrella organization or other structure. A lot of
focus will be on your thoughts about NCD as Chair and having been involved before as
NCD's Executive Director and to look at the overall effect of NCD as a body.
Factors affecting effectiveness of policy bodies
Q. NCD is an appointed body where in some countries the main disability policy body is
comprised of an umbrella group of disability NGOs who have various abilities to affect
the policies of the country either in an advisory capacity or otherwise. What are your
thoughts about the different ways that these bodies are constituted vis-à-vis their
effectiveness?
A. Well, first of all, the effectiveness can depend on a number of things, and I would start
with authority. If the law of the land has sanctioned, designated, or authorized a body to
either set policy or advise on policy, then there's reason to believe that body is going to
have some impact. I think the second consideration to make is the extent to which that
body has clout. That may be a function of either its membership, its economic status, by
that I mean, in membership -- either because it has a whole lot of members or very
influential members. By economic status, I mean either because it's a very wealthy
organization with money to spend on advertising, marketing, and lobbying or because it
has a high status budget from the government. So I really think there are a number of
factors that actually determine whether it's going to be more or less effective.
Q. And what do you think about NCD as a federal agency, albeit an independent one, but
do you think that being a federal agency limits its scope and strengthen or do you think
that NCD has more latitude to pursue its agenda?
A. Well, first of all there are some nuances that readers need to be aware of about NCD.
Originally NCD was an advisory body in the Department of Education that was by law
supposed to advise the President. But because it was purely an advisory body and a part
of the U.S. administration, that advice never seemed to go very far, despite the fact that
the members were appointed by the President.
History of NCD
Q. When was that?
A. That was 1978, in the Rehabilitation Act, the Council was set up as the Presidential
Appointees to advise the President and it was located administratively in the Department
of Education. So in reality, it was not very effective and by 1983 when hearings to
consider the reauthorization of that body were held, people in the disability community,
including myself, argued that it should not be; that it was of no value, that it should be
ended. At the same time, some of us were arguing that there should be a blue ribbon
panel appointed by the President to advise him on a number of these disability issues.
What Congress did was to take our recommendations for both and basically put them
together and made the Council an independent agency so that it had the freedom outside
the administration to give advice and publish this advice. Inside the administration, its
advice could be filtered at any number of levels. So, you know, simply to describe it as an
advisory body in the government, I think there's whole lot of different shapes that form
can take, and I think that people outside the U.S. may not realize that either.
Terms of office of Council members
Q. Can you talk a little bit about the patterns of the terms of office of the members; I
mean originally when it was set up, were the terms longer, did they rotate? And what do
you think has been the impact of the way that the board of NCD is constituted?
A. Well, that's very interesting. Because these are Presidential appointments, I mean the
President frankly can fire somebody, and what happens when there's an election and a
new President comes, and that even happens when it's the same party sometimes, the
President's office will say in a polite kind of way, "Gee whiz, you've done a nice job, but
wouldn't it be nice if we could have our own people there?" And sometimes when that
doesn't result in a polite resignation, the President's office will say, "You're fired." And
that's happened with Council members on a couple of occasions.
Q. Do they serve a fixed term?
A. The term is, and always has been, three years, and they're rotating terms and offset
terms, so that not everybody changes at the same time. Originally, it was one-year, twoyear, three-year terms and they have stuck with that. In the case of our Council, which
was basically put together in 2001, the former Council all went out at the same time and
they started over with people having one-year, two-year, three-year terms, and the law
says that you can be appointed to succeed yourself to one full term. So, if someone's
appointed to a two-year term, and then they get appointed to a three-year term, they can
be appointed to another three-year term, and therefore serve eight years, and then the law
says if you're not replaced, you can serve until you're replaced. So, I think, for example,
my predecessor in the Chair, Marca Bristo served 10 years as a member of Council,
simply through the nuance.
Q. Is there something in the bylaws or guidelines or whatever that says the composition
of the board, because I know it's now predominately the majority party? Has that always
been the case, and if so, is the sharing, if you will, between the ruling party and nonruling party in statute somewhere?
A. The law says that the Council members must be appointed to represent a variety of
considerations. It mentions in the law, parents or family members, I think, of people with
disabilities; it mentions professionals working in the disability field; it mentions
principally people with disabilities. I mean, I don't recall whether that's actually in the
law or in the regulation, or in some of the testimony that went on with the Council when
it was established. I do know that in each case, the Presidential Personnel Office looks at
that history and they actually have seemed to follow the pattern all the way through of
trying to find a lot of diversity. So it's not a written law that there should be people from
diverse cultures on the Council, but each President has seemed to do that. The current
Council has an Asian American, a Hispanic American, and so on. So, there's a lot of
diversity. Additionally, they look for diversity of geographic representation, and seldom
are there more than two people from the same State on the Council at any given time and
usually they're scattered throughout the U.S. It's not written that there should be male and
female representation, but ordinarily there's a good balance there. It's not written what
disabilities must be included, but generally there's always at least one visually impaired
person, one deaf person, and one or two people in wheelchairs.
In the last 12 years are so, they've been very sensitive to include a person with mental
retardation or a family member of a person with mental retardation and have devoted
more emphasis in finding somebody who is knowledgeable about, and representative of,
the mental health/mental illness constituency. But that's generally up to the White House
Personnel Office that makes recommendations to the President. The President reviews
and selects from those recommendations, makes the appointment and then it's sent over
to the Senate. Now, that's interesting too, because in order to have Senate confirmation,
the credentials of the people who are appointed by the President have to meet a higher
standard. In those situations, people get a very rigorous review from the security agency,
in this case the FBI, and it's a standard above that of strictly Presidential appointees that
are not necessarily Senate confirmed. So, for example, the members of our President's
Committee for People with Intellectual Disabilities, are Presidential appointees but
they're not confirmed by the Senate.
Implications of the budget
Q. In terms of NCD itself, what is the budget?
A. Roughly $3 million.
Q. At one point, there were other "sort of" independent agencies such as the President's
Committee on Employment of People with Disabilities, and they were also sort of acting
as bully pulpits, in that case taking on the goal of promoting employment for people with
disabilities. Now, it seems like it's pretty much on NCD to carry the whole weight of
pushing the disability agenda. Do you think that's the case, and do you think that it's
putting too much on NCD and its rather small staff and rather small budget?
A. Well, it is a relatively small agency to manage the breadth of issues that pertain to
disability, and because of that we're not able to comment on some very important issues,
we have to focus on and pick a few at a time that we can concentrate on. I personally
believe the President's Committee on Employment of People with Disabilities was an
effective body. I don't know why it was dissolved but I will point out that when it was
dissolved, the Congress set up another employment advisory council for some reason,
and I don't really understand, I haven't tried to figure it out. But there is apparently a
dormant Presidential Advisory Council on Employment?
Q. There is?
A. Absolutely. I believe that it's the same statute that moved the disability employment
program to the level of Assistant Secretary.
Q. In the Department of Labor's Office of Disability Employment Policy (ODEP)?
A. Exactly. And at the same time ODEP was created I believe there was also created by
the Congress this blue ribbon employment advisory committee, but whatever happened to
it, I don't know.
Relationship of NCD to U.S. disability movement
Q. Talk a little bit about how NCD operates, and particularly in relationship to the
disability movement in the U.S., because I think you know that in some countries the
equivalent to NCD would be the umbrella group for all the disability organizations.
That's not the situation with NCD, so how does it interact with the sort of formal
disability NGO movement in the U.S.? And how does it operate in terms of deciding what
its agenda is going to be and so forth?
A. First of all, it's important to recognize that NCD has no formal or legislative
obligations to consult with the disability groups or the provider groups or anything. That's
not required; they don't require us to do that. However, the NCD leadership has always
been cognizant of the fact that we live in a democracy and in order to have an effective
democracy you have to practice consultation. NCD has always, I think, done an
exceptional job of involving and working with and consulting with the disability NGOs,
probably not a very good job always of consulting with provider organizations and some
others. I think NCD by its nature and its history has a bias towards a consumer viewpoint
in that regard. But the work that gets done there is mainly policy recommendations, the
basis of which are developed by a professional staff who are paid and guided to do this
work. Presumably, they are looking for data and information that comes forth from a
variety of different sources to substantiate the recommendations that the Council actually
considers, votes on, and then publishes.
Selection of priorities
Q. So how do you decide, does the board itself decide what you're going to pursue as
your main topics for the next year, or two years, or three years?
A. That's exactly how it works. The Council, the 13 members, are actually ultimately
responsible for dividing the budget and the budget actually creates certain perimeters in
terms of the amount of work that can be done within those perimeters. Then, sometimes
on the basis of hearings, staff recommendations and otherwise, the Council identifies the
target areas, the priority areas, for the next year or two.
Then the staff develops a work plan from the budget and the priorities, and comes back to
the Council and says, you know, "If we do a report and some hearings on this matter, do
you think that will give us sufficient information and a good basis on which to make
recommendations?" I mean, the main product of the National Council on Disability, is
recommendations. That's the job of the Council, to make recommendations on disability
policy to the President and to the Congress. Those recommendations, in my judgment, are
only as good as they are valid. And they are only valid; it seems to me, if they are
substantiated by good data, by good rationale. In order to get those data and that
rationale, you have to do consultation with the community, you have to study the
literature, and you have to synthesize all that. Ordinarily our recommendations are the
result of studies and/or observations in the form of hearings or conferences or something
of that nature.
Main impacts of NCD
Q. And what in your view has been the main impact or impacts of NCD, particularly in
the last five years, or you can back as long as you want actually?
A. Well, I must say I'm one of those skeptics who wondered if any agency making
recommendations can have any effect at all. I was skeptical from the very beginning of
the Council as an independent agency because I had seen the relative absence of
recommendations from the prior Council, the Council before the independent Council,
and those recommendations that were made seemed to have been virtually ignored. So
the new Council that began in 1984 started by making a series of recommendations that
included the disability rights law. ADA was clearly a result of that and that was clearly a
huge impact, so it proved that it was possible for the Council to have an impact. Since
then, there have been a number of other recommendations that the Council has made that
have resulted in perhaps less evident, but I think significant, legislative changes.
The Council actually recommended that the Independent Living Centers be more
involved in determining how their money was divided at the State level, and from that the
Rehabilitation Act was amended to include State Independent Living Councils. NCD
recommended a number of changes in Social Security legislation. It's also interesting to
note that in the end when a recommendation is finally passed or finally implemented, it's
probably a result not only of the Council's efforts but also of a variety of other groups.
Sometimes it's hard to say who even took the initiative to begin with because I don't think
there are too many original ideas out there. They sort of float to the surface every now
and then, and sometimes it seems it's the right time.
Some of the accomplishments I would identify as of the Council, other groups might
claim as their own and I think that's good. I think that's probably the result of having a
democracy. Congress acts based on recommendations they get from a variety of sources,
not a single source, and it's hard to find examples of where any one body is the final bit
of influence. But clearly, you can trace the history of the ADA and since then, I think the
Council has made recommendations about virtually every aspect of disability that have
been incorporated by one means or the other into the law. Most recently, the Council has
been working on recommendations that relate to personal assistant services for people
with disabilities, and we have provided a great deal of information to the Administration
and to the Congress. Some of that has actually been used in the work that's been put forth
to date and I think more of it will be used.
The Council has tried to collaborate, as you know, with the United States International
Council on Disabilities (USICD) and other groups, and members of USICD, to influence
the way the United States Agency for International Development (USAID) spends its
money and whether or not they actually use people with disabilities in the consulting
process, in the delivery process, and whether they actually make it work to benefit people
with disabilities in other countries. These are things that the Council does. The other
thing that NCD can do that other groups can't do, because of our status as a government
agency, is NCD can hold other agency administrators accountable in a certain way to the
Council. I mean I just wrote a letter to the head of the USAID insisting that they meet
with the Council, and that meeting was held. In my experience, I don't think an NGO
could have gotten the same level of attention.
What would you change about NCD?
Q. If you were to redesign NCD what would you change?
A. I'm not sure I would change anything. I certainly wouldn't without thinking in depth
about it. I don't think I could make any good suggestions about that. There aren't any real
outstanding failures, you know, there are no broken pieces that I would try to fix right
away. It seems to have withstood the test of time and it seems to be as effective now as it
ever was. It's pretty well located; independence I think is very important. Some people
argued and, in fact, the White House has argued, that it should be under the
Administration's wing and it would have more clout, but I don't honestly believe that. I
think if it were under an Administration's wing, it might be easier to have certain kinds of
meetings in the White House, but by the same token you wouldn't be able to issue reports
like the Council does that sometimes conflict directly with Administration policy.
Q. If you weren't redesigning, but if you had a wish list for NCD, would you add
something, would you make the budget bigger, would you make it larger? Do you think
being sort of lean allows you to do certain things that a bigger agency might not be able
to do?
A. Well, I think I would not mind a larger budget. I think a larger budget would be
advantageous and I think the Council could manage a larger budget. You know, there's a
group in the Netherlands, the Dutch National Council, that was given a substantial
amount of money, actually in comparative dollars, about 10 times the amount that NCD
has. They use that money to good effect by conducting a major national public awareness
campaign. I'd like for the NCD to be able to pay for advertisements about implementation
of the ADA and tell people what their rights are on commercial television, the same way
that the Transportation Department puts advertisements on television about buckle up for
safety.
Pace of current progress?
Q. Some disability advocates have said that there has been a lull or even a backwards
movement since the days of the fight for the ADA. Some people also say the younger
people with disabilities don't even realize that it wasn't always thus, and they don't
realize the fight that it took to get this far. How do you see NCD's role currently and what
is your hope for what it will be doing five years from now?
A. The issue of the changing generations and the zeitgeist in the disability community
and so on is an interesting one. Frankly, I do believe that these younger people with
disabilities who were not confronted by some of the frustrations that those of us older
folks confronted in the early days of the disability rights movement, nevertheless have
their own frustrations. So I don't feel like we need to be feeling too self-conscious or too
careful of the future of the disability movement, because I think that with young people,
everything is relative. What to us might have been a big deal when we dealt with it,
somebody else has faced and it wasn't a big deal.
I believe that the lack of health care and rehabilitation services for people with disabilities
is going to become a huge issue. The current generation is going to be frustrated and
rather shocked by the lack of sponsorship of rehabilitation and health care for people with
disabilities. I think particularly that's going to affect younger and older people. Older
people are going to discover that there really aren't systems of care for them in their
homes; there aren't enough nursing homes; they have to pay for their own nursing homes
and it's very expensive; and there's nobody to provide assistance to them in their homes. I
think that's going to be a shock to a lot of people who are not disabled today but through
the natural aging effect will be made disabled.
A lot younger people with disabilities are going to discover that their insurance policies
and their Social Security policies only cover $2,500 of the cost of a wheelchair that may
cost $25,000. These are things that are going to be shocking to people and that will
inspire a new focus and a new fervor on the part of the disability movement. So I do think
that social movements go forward in phases and they have their fits and starts and their
ups and downs. The largest coming together in the disability movement clearly focused
on the signing of the ADA, and I think there was a predicable kind of lull in activity after
that. But I think there's a new wave coming on and I love to have that kind of excitement
by young people. The National Council on Disability has a Youth Advisory Committee
and the American Association of People with Disabilities has a Youth Award and
mentorship kind of program and if I look at the energy that surrounds youth with
disabilities, then I'm fairly optimistic about that.
Future of NCD
In regard to the future of the NCD, it's a very interesting question because currently the
Congress acknowledges the importance of the NCD and they continue to reauthorize it.
But to the extent NCD complains that there needs to be more legislation and those
complaints or that advice confronts the Congress, who in this decade, I suspect, will not
be eager to put in motion new programs that involve money, then the Council will
ultimately come in conflict with both the Administration and the Congress. Depending on
which one is supposed to be holding the bank book tight, that conflict will result at some
point in some kind of backlash, I'm sure. I mean, if you're a thorn in somebody's side, the
reaction is to pull you out. If the Council continues, as it has, to complain that there are
not enough efforts to provide funding for rehabilitation, personal assistance services, etc.,
whoever they are complaining that to is going to get tired of hearing it. It's either going to
go away simply because it's been said over and over again and nobody is paying
attention, or if it's said in a such a way that they have to pay attention, they are just going
to muzzle it by de-funding or by de-authorizing it. I think that's always a risk. So it's
important for the Council to have allies in the community because again, the good thing
about a democracy is you can't take something away that the people want. As long as the
Council is representing the people I think we will be in a good position to continue to be
a sounding board and a voice box.
Coalition between advocates for aging and disabilities?
Q. It seems to me that in a way, what you are suggesting, particularly with the issues
around health care and rehab and so forth, you're almost suggesting a kind of coalition
of the aging and people with disabilities, who may in fact be one and the same?
A. Yes, it will happen. It will happen quite naturally through the evolution of the
demographics. It will also result in changing priorities because those older people are
going to vote in a block and they're going to want service. I'm not sure how the economy
is going to deal with that because there are going to be relatively fewer younger people to
be working and paying taxes, and yet more older people who want more services, so all I
can say is that the economists better figure out how to squeeze that lemon.
Interview with Bengt Lindqvist, former Swedish
Minister
Interviewed by Ilene Zeitzer, June 2004
Q. Before being appointed the UN Special Rapporteur on Disability, you had a position
with the Swedish government?
A. Yes, I was the Minister for Health and Social Affairs.
Q. And how long were you in that position?
A. Six years. And before and after I was elected as a Member of Parliament, holding a
seat for 14 years on the Stockholm bench.
Q. So you were elected prior to being a Minister and then after, so that means you were
appointed in the middle and then went back to being elected again?
A. Yes, and took up that office in '92 and went on until '96, when I left freely, because I
had a seat going up until '98. But the job as Special Rapporteur takes so much time that I
said to myself before anyone else discovers how little I do in Parliament that I'd better
leave. I sneaked out, but when I did of course, they...well, there was a little bit of media
attention.
Experience as Member of Parliament in early 1980s
Q. Can you talk a little bit about when you were first elected to Parliament, what year
was that?
A. That was in 1982. The background was that, by way of simplification, you could say I
was chairing the disability movement in Sweden. At the same time we had a very
difficult economic crisis around the year 1980, and the popular movements, like the trade
unions, the pensioners, disability organizations -- we even had a strong renters union -got together and said now we are going to publish a White Paper on the consequences of
capping social expenditure in Sweden, and I chaired that exercise. The book got quite
some attention and I think it contributed to the fact that Social Democrats came back to
power in 1982. During that period, people asked me -- I belong to the Labor Party, the
Social Democrats -- they asked me if I would like to run for Stockholm. So I did that in
1982 and got the seat from then on. So that's how I got in.
Q. At the time you were the first Minister who had a disability in Sweden, is that correct?
A. Yes.
Q. What do you think the impact of having you in the Parliament was on Swedish policy,
and on your non-disabled colleagues?
A. Well, first of all, it contributed to making disability more visible in the political
process. I mean, I was physically there. I came with my white cane, every time we had a
voting procedure I came in, so everyone saw me, everyone reflected. A lot of people
came up and said, "how can you do this, how do you get your information?" The flow of
information is, of course, the big problem for a blind person in Parliament. And also from
the very beginning, there was a very strong conviction, that we will manage the obstacles:
we will see to it that Bengt gets the information he needs when he wants it. So, the party
provided one full time secretary to me. In the Parliament in Sweden, everyone belongs to
a Commission. I got into the Social Development Commission and the office of that
Commission, the Secretariat, hired an additional person to assist me. So I was really
spoiled from the very beginning with very good service.
Assistive technology: first scanner took two people to carry it
Q. Explain about how back in 1982, prior to the widespread use of the Internet and so
forth, how you got your information then?
A. I have a story about that that I will tell you before I answer. When I came back to
Parliament after the six years in government -- we had lost the election in 1991 and then I
got re-elected-- by then, Parliament was completely computerized. I had gotten
equipment for access, so the two secretaries I had in the Parliament in the previous
period, I didn't need any more, not at all. I could manage. I think I had 20 percent more
secretarial help then any other Parliament Member. So that's what computers can do.
Q. So what did you do prior to your first term?
A. They recorded a lot on tape. We had a computerized printer, so, already in 1982, the
important texts were produced in Braille. We had a colossal machine, which was a
scanner, it's now in the museum because the Parliament bought it for I think half a
million Crowns. It takes two people to carry it, but it could scan. So it scanned some text
for me. You know, a scanner now is 2,000 Crowns and the size of a package of
cigarettes. What a development!
Q. I thought I remember being told that back in the '80s that you had some kind of system
that read you the newspaper or delivered the newspaper to your computer?
A. Yes, that was the Swedish system. We had it. If you subscribed to a newspaper and
you were a blind person, and if the newspaper you wanted to read was part of the system-and I think some 80 newspapers in our small country belong to this system-- you get a
special radio receiver that is then connected to your computer. During the night, the
newspaper transmits the whole newspaper electronically to your computer, and in the
morning you have your morning newspaper.
Q. And that existed back in 1982?
A. No, actually the first experimental service we had with daily newspapers began in
1980. The small newspaper in a local town, which they read on tape, not all of it, but
about one hour of the most important content that the newspaper editors selected, then
these cassettes were carried out by the newspaper distributors, like the other papers. That
was the first. This was awkward of course, and step-by-step we have refined it. We still
have this system and it's still being refined and simplified. We think it's an important
aspect of civil rights, I mean to be able to read your own newspaper, the one you prefer.
Responsible for more than disability portfolio
Q. In terms of the things you were able to accomplish while you were in Parliament, as
far as advancing the agenda of individuals with disabilities, can you point to things
where you feel your presence made a difference?
A. Yes, but I want to make one point, which is important to me. When I became a
Parliamentarian, I was not there solely for the purpose of disability. I had to accept other
portfolios, and I got other responsibilities immediately and that was very encouraging. I
got into family policy and childcare and training of doctors and I remember I had many
issues like that when I was a Member of Parliament. But of course, I still held the
position of Chair of the Swedish disability movement the first three years when I was in
Parliament, so, of course, they used me very much and we made a lot of fuss. I put
questions to different Ministers, I made motions, I was one of the most active Members
of Parliament. Actually, when I was appointed a Minister [for Social Services], they
joked in Parliament and said* that "the appointment was the only way to silence
Lindquist." Most of the motions I did together with the movement of disabled people, so
it was a lot of things, many details, of course, but also some very important, big things.
One was the recognition of the sign language as the first language of deaf people. And I
and another Member of Parliament made a motion to create a Bioethics Council in
Sweden. I think this was in '83 or '84. Because the Prime Minister of Parliament himself
got very interested in the idea of that Council, we got that through. A few years later I
became a member of that Council. So those are some examples, and then when I came
back from my time in government, I was one of those who initiated the Swedish
disability office.
Impact on non-disabled colleagues in government
Q. What was the effect on your non-disabled colleagues, both when you were a Member
of Parliament and also as a Minister? Did they become more aware of disability issues in
areas that would not necessarily have been thought of as disability issues, such as
transportation?
A. I think we had gone past that when I was a Minister, because there were
responsibilities for disability measures in several Ministries, in the Ministry of
Communication, Public Transport, Education, Labor Market, and, of course, Social. So
many Ministries had programs already, but there's no doubt that my colleagues in the
government, there were 22 Ministers, very often came to me and said, "Well, this is a
disability issue. This must be yours" and I would very often tell that that, "No, it's an
education issue which happens to be a concern for some people with disabilities, but it's
your portfolio." So, often they tried to send issues, disability issues, back to me, because I
was a disability advocate. I had that image. And sometimes I had to fight to make them
take on their responsibility, and I think that was an educational process between us. But
they were tempted to give it all to me.
Q. But then, as a result, they got used to having to think about disability without having
to ask your opinion, is that a correct statement?
A. Yes, I think you can say that, yes. There was a certain educational element between us
concerning disability, a learning curve. As there was between us and the Minister
responsible for gender issues, I'm sure.
Serving as the U.N. Special Rapporteur on Disability
Q. Can we talk a little bit about your role as Special Rapporteur at the U.N. and how that
came about in terms of your being appointed?
A. It's a special story because Sweden was one of two countries in the 80's proposing in
the United Nations General Assembly that there be a Convention on the Rights of
Disabled People. Italy did it, and we did it. And I was the Minister responsible for it. So I
was in the U.N. in 1989 trying to get a convention, and that was the genesis of the
Standard Rules. They rejected a convention, there was "convention fatigue" at the United
Nations. You know, the Child Convention was coming on; they had enormous problems
in getting the monitoring system financed for the Women's Convention. And they were
saying, you know, "don't come with one more" -- that was the essential attitude, "not
now." But when they had rejected our proposal, then there was a kind of guilty
conscience, and we realized that we could use that. We said, "Well, something has to be
done because what we achieved during the year, and two, three years prior to that, is now
being destroyed due to lack of attention" and many governments agreed.
So, that is the background of the decision in 1990 to draw up the Standard Rules as an
implementation tool to get things done. And I was involved in preparing that decision. I
then got involved in preparing the Standard Rules, I actually wrote parts when I was
employed as a consultant for 11 months by the U.N. at two different periods between
1991 and 1993. Then in '93 the Rules were completed, and were adopted in early '94. The
UN Secretary General asked me and asked the foreign office if they would support his
nomination of me as the new Special Rapporteur. I was was already knowledgeable about
the Standard Rules, and I suppose that's why they chose me. It was Boutros BoutrosGhali, the former Secretary General, who asked me and the Minister of Foreign Affairs if
we were agreeable to this arrangement. There was one condition, not very clearly stated,
but, of course, I used that, saying that the government providing the person should also
support it.
Q. Pay the salary?
A. Yes, pay the salary but also support the office. And as I was a Parliamentarian, I made
a condition that I should have a small office in Sweden but my base was in New York.
We've had that office from the very beginning, from September '94 until we closed down
in January of last year, 2003.
Q. And you were appointed initially for how long a period?
A. Three years.
Q. Three years was the first term and you did another term?
A. A second term also for three years, and then a third term of , almost three years. I don't
know why they didn't make it a full three years.
Impact of 9 years as UN Special Rapporteur
Q. Can you explain how that office operated within the framework of the U.N.? Was it
just a bully pulpit, just to try to get people to pay more attention to disability issues or
were you able to have any oversight over things that the U.N. was doing?
A. I was certainly working hard to influence different parts of the U.N. to do more and to
do it in harmony with what the General Assembly had adopted in the Standard Rules. So
I approached all the U.N. family. I had a close cooperative relationship with the ILO
[International Labor Organization], with the WHO [World Health Organization], with
UNESCO [United Nations Educational, Scientific and Cultural Organization], and--to a
lesser extent--with the UNHCR [Office of the United Nations High Commissioner for
Refugees]. So it was a main part of our work to involve them and also to coordinate what
we were doing with them.. If you look, for instance, at the education issue, what the U.N.
decides has to make some sense, and the Standard Rules has a rather distinct section on
education. And then the Salamanca Statement was developed by UNESCO, and I had a
small, not-very-influential part in drafting that too. There are very strong forces in the
special education field, as you know. But we tried to coordinate so that the two
documents did not conflict, and it was the same when the Committee on the Rights of the
Child started. We cooperated closely on monitoring the situation of children with
disabilities. Not so with CEDAW [Convention on the Elimination of All Forms of
Discrimination against Women] and the Women's Commission; they weren't so interested
in cooperating. They were standing on their own feet and did what they wanted to do.
But the answer is, I tried to exert influence, I tried to form relationships, I tried to work
system-wide in the UN.. I also tried to use the very small resources that there are in the
U.N. family for disability to try to coordinate, especially with the WHO. We were
successful to the extent that the third global survey I conducted, was done together with
the WHO. That was another way of working, to do a global survey, to measure progress
in countries. And the third one is, of course, to visit countries. We made it our policy that
we must have an official invitation from the government. That is not to try to be a Special
Rapporteur of the kind that you have in human rights, because they can stand on a
Convention which gives them legal clout with countries and they can come and go when
they like. If I did that, then governments were very reluctant to cooperate, so I said, "If
you want advice, if you want guidelines, if you want to discuss your own achievements, I
am happy to come. But you have to invite me formally." That way we were always
received by the government of the country. Then we made it a point, of course, to
mobilize the organizations of disabled people. Afterwards they thanked us for having
opened the doors to the government ministries which they had been knocking on for a
long time but prior to our visit, often had not been able to get a real conversation with
them. In the country, we often tried to mobilize the U.N.D.P [UN Development Program]
office, whatever there was, we tried to liaise.
Challenge of conducting international surveys on progress
Q. And when you did the monitoring mechanisms, the reports, how did you do that? Did
you rely on the disabled people's organizations within the country to give you that
information?
A. You know the official way is to ask the government, and we had official replies. More
than 100 governments responded to our global surveys of progress achieved in
implementing the Standard Rules, which is a lot for U.N. surveys - typical is anywhere
from a high of 70 to a low of 40 replies. But we had more than that. We had 93 and the
largest one was 107. But at the same time, we sent exactly the same survey questionnaire
to the more than 600 national affiliates of the six organizational members of the panel.
[Disabled People's International, Inclusion International, Rehabilitation International,
World Blind Union, World Federation of the Deaf, and the World Network of Psychiatric
Survivors] So we got responses from many of the organizations of the blind, of the deaf,
and of the physically disabled. For instance, in the biggest survey, the second one, I think
we had 250 organizations responding from many, many countries; we got organizational
responses from 130 countries. Of course, if you actually compare the answers from the
organizations and the answers from the government, sometimes you wouldn't believe it
was the same country. They were very, very different. One problem for us was also that
the replies from the organizations were very different, some were very positive and cited
some achievements and others were very bitter and didn't see any progress at all.
Q. Within the same country, some organizations would see the glass as half empty or half
full, is that what you're saying?
A. Yes.
Q. Do you think it was because of the type of condition that that organization was
representing or do you think it was some organizations have official status with the
government and others don't, was it that?
A. No, I think it was factual. If the visually impaired had had some recognition recently,
then they took a very positive stance and said that we have made progress in this area,
and this and that has happened, and it colored all of their responses. But in other cases,
they were fighting with the government. And you could have different organizations
expressing conflicting views in the same country.
Q. It must have been very hard then to sort it all out to get a sense of what the situation
was really like?
A. Yes, it was impossible.
Q. How did you resolve it, what did you do?
A. I didn't attempt to tell the truth about the country, but I said that there is more than one
way of looking at it. You can read those reports, and the summaries of the responses from
each individual respondent. For example, take Sweden. I remember because I had been
discussing this with people. We had the government's response and the organizations'
responses. And I told them all, "sit down at the same table and try to come up with one
version of reality, what is the truth. Is the law working as the government says it's
working or in the way you're saying it's working?" There were some factual differences
which were resolvable, and in some cases there have been dialogues between respondents
about their responses, so it was a useful exercise. The first thing we must agree on, even
if we don't have the same perspective, is, what is the situation?
Q. I think it's hard without having quantifiable, baseline measures.
A. And we didn't have that.
Q. So then doesn't it all become emotional, or episodic or anecdotal kinds of things that
get reported?
A. Yes, but there also were measurable indicators of progress. You should see the
questionnaire. Is there a national council on disability, yes or no? Are organizations of
disabled people represented on that council, yes or no? Do they form the majority on that
council, yes or no? We used those kinds of questions.
Q. Those are rather straightforward.
A. And yet we would have different answers in many cases. Take the issue of sign
language. In Sweden (where I knew the situation), the deaf reported correctly with
respect to the government, but the visually impaired didn't seem to know what the
situation was concerning the sign language issue. So some organizations can be more
ignorant than others.
But we made one mistake. I know that you know from the work you do, that it's very,
very difficult to formulate such questionnaires internationally, because [countries] are
also so different. With WHO, we asked about rehabilitation, and the questions were
constructed in such a way that practically all the countries in the world seemed to have
well-functioning rehabilitation programs because they could answer yes. And if you had
one program for ten people, you could answer yes. So quantification is important.
Practically every country has some kind of rehabilitation, for perhaps 10 or 100 people,
but not for all people in these developing countries. There should have been a second
step, a follow up question to go into more depth to see what the actual situation is. So, it's
very difficult, but that is one way we tried to work. I would have liked very much more to
link up with universities and to make them follow up, if not the whole global survey, at
least certain aspects in a region or between a few countries or even this kind of
clarification in one country. But we never did that, although I think we stimulated some
individual researchers. I've never specifically seen the results, though.
Improving Policies, Transportation & Education:
Interview with Ann Marit Saebones, former Mayor of
Oslo, Norway
Interviewed by Ilene Zeitzer
Q. When were you Mayor of Oslo?
A. I was Mayor for four years, from January 1992 to December 1995. I was elected in
1991 and I came straight into the Mayor's seat without having previously served on the
City Council. In the 1995 election we were defeated by the Conservatives; who drew
support not so much from my party as from its coalition partners. Later on, I became
chairperson of the Labor Party caucus [bloc] in the City Council, a position I held from
1997 until 2003.
Serving on the City Council as a Labor Party member
Q. So you actually started out as Mayor and then went to the City Council?
A. Yes, in opposition. In Norway, you do not run for mayor as an individual; you run as
part of a party slate. A party officially decides who is to be mayor only after it has won an
election. But, in actuality, parties make their choices known before the elections so that
people know who the nominee is. If you are the nominee in an election and your party is
defeated, then it's expected that you will serve in the opposition.
Q. What previous background of yours led to your being chosen by your party to be its
designee for Mayor?
A. Well, I had been a Labor Party activist for many years. For a brief period I also had
been what we call an alternate in Parliament. I also think I had become fairly well known
in my capacity as the social services Ombudsperson for the city of Oslo. So I was chosen
as a candidate for mayor because they thought I was something of a known quantity.
Q. As a person with a disability, do you think your election as Mayor had an impact
among your fellow politicians?
A. Among my fellow politicians, certainly. But among the population as a whole, I don't
think so. After I was elected Mayor, and even when I was running, I had lots of
interviews, where they tried to show what kind of person I am. I talked very freely about
my disability. I think it's very important that I do so because my disability is not readily
apparent to many people--I can walk fairly well with my leg, and my hand is easy to
overlook. So I think it was very important in all my interviews to talk about my disability,
what growing up with a disability was like, what kinds of trouble it caused, and what
society can be expected to do about it. So I never tried to hide it. On the contrary, I
deliberately highlighted it.
Impact on policies
Q. What impact did that have on your policy agenda, on how you pushed that agenda, or
on the Council?
A. First of all, I should add that in the Norwegian political system, it's very important to
work through your party, because what a party puts into its program is what it works to
accomplish at the local or national level. So I've always found it's very essential to be
involved in developing my party's program because that's where we define what we are
going to do if we come to power. My party had a fairly good program on disability, but
the effect my disability had in the City Council was that when we proposed something on
disability, it was very difficult for the other parties to reject it. When I gave a speech after
becoming Chair and said we are proposing this and this, it was very difficult for them to
reject it.
Q. Because they would in a sense be rejecting you?
A. In a way. One of the last things that I did, not as mayor, but as opposition leader
before I left the City Council, was to propose that purchases by the city be limited to
items which are usable by disabled people so that disabled people should not be
discriminated against and excluded. To be honest, I don't think that Council members
knew what they were doing, but they voted for it. So it's there, and it's there for
organizations of people with disabilities. While I don't expect that the city as such will
push it, I think that the organizations of disabled people might, so that was an
achievement. And there were lots of smaller measures which we debated. But I think the
biggest problem in the city of Oslo, which I'm sure you have identified while walking and
driving around the city, is that that it's not very accessible to people in wheelchairs or
blind people; it's very bad.
Q. Well, part of it is those cobblestones.
A. That is bad, I agree, but they are in very few places. But I think that what's worse is
that the trams [trolley cars] and buses are not accessible. That's very bad. Some of them
are accessible -- the city decided some years ago that all new trams and busses bought
would be accessible, but I think the process has been going very, very slowly.
Transportation for Norwegians with disabilities
Q. And what do people generally do? Do they drive?
A. No. In Oslo we have established a transportation service that anyone who is in a
wheelchair, has difficulty walking, is blind, or has difficulty learning, can call for a taxi
and pay the same fare as they would pay on fixed-route transit buses. In Oslo all people
up to age 67 who have been found eligible can use it almost as often as they want to, as
long as they don't overdo it and take rides all day.
Q. We call it paratransit. But the problem is you have separate parallel systems, but not
one integrated single system.
A. I agree with you, but that is how we have dealt with it. As everybody knows, I think,
I'm working to make the bus system and trams and trains and subway accessible. And I
think it will slowly happen, but in the meantime we have to operate the two systems in
parallel, because it will take time to gradually replace existing inaccessible equipment.
Q. Do you have a deadline in terms of a time limit for all that?
A. No, we don't.
Q. But any new equipment that you buy in Oslo has to be accessible?
A. Yes, so they say. But the issue was also addressed by a national commission, which
proposed a timetable for improving accessibility in a number of areas, including housing
and several modes of public transit, but the government didn't accept the proposal,
naturally. So there's no real timetable.
Q. Isn't Norway in the European Union (EU)?
A. No. We have had two plebiscites on whether to join, and both lost by very narrow
margins.
Q. Because the EU has mandated that its member countries make their transportation
systems accessible by a certain deadline.
A. Well, I think it will happen regardless in Norway.
Q. Is there an ombudsperson for disability in Norway like there is in Sweden?
A. No, there is not. But they are working to get one. An official commission has
recommended that there be one and also that we should have a law against
discrimination.
Q. So you don't have that yet?
A. No, we don't have that yet, although many people with disabilities use social services
and thus have recourse to the social services Ombudsperson.
Q. So there's an Ombudsperson for health and social services?
A. Yes, in several cities and I think in almost all counties.
Q. Is there a comparable position at the national level?
A. No.
Education and deinstitutionalization
Q. What disability-related policies or issues were you able to influence?
A. I had to stand on my party's program, as I said earlier, but we always asked for more
money for transportation for people with disabilities. And then we successfully argued
for making buses and trams accessible. We tried to fight to maintain home services for
people with disabilities. In Norway we've been moving away from placing people in
institutions and toward placing them in the community, and there's always a fight over
how much money to spend on that. I think that accessibility and home care were the most
important issues.
And then, of course, schools should educate everyone. In Norway, the city or the
community authority is responsible for the schools even if you have the curriculum given
to you by the state. There's money for special education in schools. But we always have
to fight over how much money is actually spent on it. But the law in Norway is very
clear--everyone has a right to go to ordinary [regular] school. If you need special
education, you get it in your ordinary classroom.
Q. So you don't really have a separate special school system, like special schools for the
blind, etc.?
A. We have some special schools for the blind because that's what some prefer, but they
don't have to go to them.
Q. They have a choice.
A. Yes, and deaf people usually want to go to special schools for the deaf because they
are attracted by the sign language environment and deaf culture. On the other hand, some
people send their [deaf] children to ordinary schools. But I think the most revolutionary
change has been the trend toward keeping people with what used to be called mental
retardation in the community instead of putting them in institutions. In Norway,
everybody with a cognitive disability has the right to have an apartment of their own or to
share one with four to five other people, with the government bearing the cost. Then the
fight is over how much support to provide. But they all have the right to go to ordinary
schools.
Q. What about transportation for those kids who go to ordinary schools?
A. They have special transportation, which they can use through college.
Q. How are your colleges and universities at accommodating students with disabilities?
Do they provide easy access?
A. Some people have complained that insufficient accommodations have been made
when exams were given.
Q. They are not given special help?
A. They do get special help and more time, but that doesn't satisfy them. I think that,
compared to the rest of the world at least, we have good provisions for financial aid, but
then we have the problem of accessibility again. Auditoriums [lecture halls], for example,
often have steps and tiers of seating. The back of a lecture hall may be accessible to
students in wheelchairs, but an instructor in a wheelchair would have difficulty getting
down to the front. Blind students who need Braille face the problem of getting their
school books after sighted students get theirs. I understand that this problem may be
eliminated with the introduction of computerized Braille printers which can produce
Braille text in a more timely fashion. This is also a problem in primary grades, where it is
hard for blind pupils to get education materials in alternative formats. When I headed the
National Council on Disability, we said to the government that it is discrimination and a
violation of their human rights to provide school books later to some students than to
others... There is no use going to school if you don't get your school books at the same
time as your peers. So you see that even though the law makes it very clear that
everybody is has a right to an education, exercising that right can still be difficult [for
some].
Q. Do you have a mechanism for providing readers for blind students?
A. I think so. We have books on tape, etc. In Norway you can get support services even if
you need them at work, I think. But these are very difficult and complex issues, and while
I knew the rules at one time, I don't know them now.
Q. Do you have a problem with disabled youth dropping out of school?
A. Using the capabilities of children and youth with disabilities to best advantage is a
huge problem in Norway, too. It's not so much that they drop out of school, but rather
that they don't get jobs anyway. I don't have precise figures, but I think most children and
youth with disabilities finish school, in one way or another, because we have such a just
educational system that that there are ways (such as vocational schools) of getting
through it successfully even if you aren't academically inclined. The trouble comes when
they enter the job market and can't get a job, notwithstanding the governmental agencies
that are supposed to help them find one. So what we are seeing now is whole generations
of children and youth who have gone through the educational system and are used to
having social interactions and being accepted by their non-disabled peers, and suddenly
they find themselves excluded, which is very hard on them. So the trouble, as I see it, is
that we are not succeeding in getting these students into jobs, so they go on social
security for the rest of their lives.
Disabled Persons in Positions of Governance: an
analysis
By Ilene Zeitzer
"By definition, a government has no conscience, sometimes it has a policy, but nothing
more."
Albert Camus (1913-1960)
"The welfare of each is bound up in the welfare of all."
Helen Keller (1880-1968)
Goal of the Project
This report seeks to answer some basic questions about the effect of having people with
disabilities in high positions of governance. Does it really make a difference? When
people with disabilities serve in high positions of leadership, do governments develop "a
conscience;" at least, do non-disabled politicians think about the impact on people with
disabilities when they develop policies? What are the systemic differences in the ways
that some countries are integrating disabled people in positions of governance? What are
the differences, if any, in being elected versus being appointed to positions of high
leadership concerning self-perceptions of disabled leaders? Does having disabled
colleagues raise the awareness of non-disabled politicians on the issues that stem from
coping with a disability in a non-disabled world? Once in positions of governance, do
disabled individuals see themselves as spokespersons for all other disabled people or do
they avoid or shy away from being perceived as a "poster child" or a single issue expert?
Finally, what do disabled leaders see as their impact on the welfare of their respective
countries?
Background
This study was undertaken on behalf of the National Institute on Disability and
Rehabilitation Research (NIDRR) of the United States Department of Education. It is part
of the five year International Disability Exchanges and Studies (IDEAS) for the New
Millennium project by the World Institute on Disability in collaboration with
Rehabilitation International (RI) based in New York, the International Living Research
Utilization (ILRU) project at The Institute for Rehabilitation and Research in Houston,
and the Inter-American Institute on Disability (IID), based in the Washington, D.C.
metropolitan area.
The study was initiated because, although since the 1980s people with disabilities have
been elected and appointed to high governmental positions in many countries, the impact
of this phenomenon, thus far, does not seem to have been analyzed, measured or even
explored, at least as far as could be detected through literature searches.
There are probably many explanations for this lack, but the most likely one is that
disabled individuals have only gained access to high levels of governance in various
countries fairly recently. Much as the ascent into leadership by women a few decades
before, the research that studied the impact of the gender shift lagged behind the actual
gains. While there are similarities to the situation of women in leadership positions, the
issues for disabled individuals are far more sharply cast and arguably much more difficult
to overcome. Though there were, and unfortunately probably still are, governmental,
political and other groups in every part of the world who question the capacity of women
to occupy positions of leadership, for the most part, those societal obstacles have become
recognized as fallacious and/or outdated thinking.
Unfortunately, the same cannot be assumed when it comes to having disabled individuals
in positions of leadership. Helen Keller, the blind and deaf American author and lecturer
who was known throughout the world expressed it best when she said, "My darkness has
been filled with intelligence, and behold, the outerday-lit world was stumbling and
groping in social blindness." Although Ms. Keller died in 1968, the "social blindness" she
referred to unfortunately continues to survive in many places and certainly among many
individuals. Part of the reason for this is the actual absence from mainstream societies of
disabled persons.
Tyranny of low expectations
Either because of separate service systems such as residential or educational institutions
or because of physical access barriers, people with disabilities are often isolated and
unable to participate in the mainstream. Thus the non-disabled society never sees or
focuses on disabled people - they are marginalized and out of view. That absence results
in what some refer to as the "tyranny of low expectations." In other words, having no
experience with interacting with disabled individuals, non-disabled people have
universally low expectations of their capabilities, based largely on myth and stereotype.
The non-disabled world either views people with disabilities as sick or needy or both, but
in any case, not as workers and even less so as leaders in positions of high responsibility.
Their disability is assumed to be such a limitation that it is assumed they could not fulfill
the demanding duties of their office.
The worldwide community of people with disabilities has fought for decades to retire or
shun the medical model of disability that has so darkly colored and limited the views of
non-disabled people. But in many parts of the world, disability still equates with illness.
Disabled individuals travel halfway across the globe by jet planes into airports that have
been made accessible only to be met, not with accessible taxis, but with ambulances.
Labor laws in many countries still mandate shorter work days, specified rest periods and
longer vacations for all workers with disabilities irrespective of whether the particular
disability warrants it or the individual worker wants or needs it. Whether driven by good
intentions or not, this tyranny of low expectations equates to societal ignorance and
prejudice that all of the people interviewed for this report have had to deal with during
their lifetime as disabled individuals and most certainly in their roles as leaders.
Basis of this analysis
This analysis is based on a series of interviews conducted over approximately one year
with disabled leaders from several countries of the world. Most of the interviews were in
person with many of them in conjunction with the Rehabilitation International African
Regional Conference held in Durban, South Africa in September 2003 or in conjunction
with the RI World Congress held in Oslo, Norway in June 2004. Some interviews were
conducted via telephone. In addition, two symposia on the subject of disabled people in
positions of governance were held in Durban and Oslo at the above-mentioned
conferences. The information gathered provides insight into the difficulties encountered
by disabled individuals as they assume positions of leadership. None of them said that
they suffered from self-doubt or fear that they were unprepared for the tasks that lay
ahead. On the contrary, most expressed that they had the ability, training and in-depth
knowledge needed to achieve the tasks of their particular positions. In addition, many
spoke of feeling that being disabled made them especially well suited to handle the
requirements of their jobs because their disabilities provided them with specific insights
that their non-disabled counterparts simply did not have. Nevertheless, all of them to a
greater or lesser degree have struggled to "fit" into a non-disabled framework; to speak
for disability but not to be only about disability. In the sections that follow, these themes
will be explored in greater detail.
I. How Governments have Integrated People with Disabilities into Leadership
Positions
The manner in which the subjects of this report gained leadership roles is as different as
are their backgrounds, cultures, languages or nature of their disabilities. Ostensibly, one
could argue that there are only two options for how these leaders came into positions of
power: either they were elected or else they were appointed. However, within those two
broad possibilities, there are, in fact, several variations on a theme.
Elected Officials
Some, like Anne Begg, a Member of Parliament from Scotland or James Langevin a
Member of the U.S. House of Representatives, were elected through a general election
process in which the fact of their disability (both are wheelchair users) was not relevant,
or at least had nothing to do with why they were on the ballot. In direct contrast,
individuals like Wilma Newhoudt-Druchen, a deaf Member of Parliament in South
African, was recruited to have her name placed on the ballot because she is a person with
a disability. The African National Congress (ANC), the leading party in South Africa,
deliberately recruited highly qualified disabled individuals in different areas by working
directly with the major disability Non-Governmental Organizations (NGOs). The NGOs
were asked to develop a list of well-qualified individuals and then their names were
placed on the party's national list. The ANC's strategy is quite simply to ensure through
this process that people with disabilities will have a voice in Parliament. It is part of their
overall philosophy to counter the oppressive tactics of the past apartheid governments
where minorities were excluded. Thus, in 1999, 10 individuals with disabilities became
Members of the South African Parliament - the highest representation of any country in
the world. As a result, Newhoudt-Druchen is expected to represent the needs of disabled
South Africans. As she said, "I myself am not really usually emotional, but I know
sometimes in my speeches in Parliament, I am emotional about disability issues because
I'm there to articulate personally what being disabled is all about."
In sharp contrast, Anne Begg initially saw her role quite differently: "When I was elected
first, I was actually quite keen not to be seen as the disabled MP and if anything, I
probably shied away from even talking about disability issues. I tried first of all to win
my support or get my credibility of being an effective MP on behalf of my constituents
who are not disabled, but are the people who live in my district in Aberdeen. The only
way I could do it was by not becoming a mouthpiece for disabled people." Similarly, U.S.
Congressman Langevin said, "In my service in government, I've never made disability
issues my primary focus. Just as being disabled is part of who I am, it is not the sole
focus of who I am or what I do here. I have many other responsibilities that I take very
seriously." Bengt Linqvist, who is blind, was first elected to the Swedish Parliament in
1982. Though he most certainly did not shy away from disability issues, and in fact, said,
"I still held the position of Chair of the disability movement the first three years when I
was in Parliament, so of course they used me very much and we made a lot of fuss."
However, he said he wanted to stress that he had other portfolios and that was very
important to him. "I got other responsibilities immediately and that was very
encouraging. I got into family policy and childcare and training of doctors." Thus, there is
a major difference in the thrust or impact of these two very different ways of ascending to
leadership positions. In the South African example, the intent is to right previous wrongs
by taking pains to ensure that, just as with other minorities, people with disabilities are
represented in the governance process and have their views articulated by people who are
seen as most competent on or best able to know the issues. In the UK, US and Swedish
examples, almost the opposite view appears to be in effect: namely that disabled
individuals are so much a part of the mainstream that they can be in positions to speak for
all their constituents, the vast majority of whom are not disabled.
Of course, both situations are something of an artifact because, in truth, NewhoudtDruchen's deafness does not necessarily make her any more of an expert than a nondisabled person might be, concerning the problems of people who are quadriplegic or
who have mental illness, for example. People with disabilities are not a homogeneous
group any more than are Hispanics, so to a degree, speaking for them or representing
them is something of a conceit. Begg addressed just that point by saying, "I've been very
keen to avoid that label [of a mouthpiece for disabled people] because disabled people are
not a homogeneous group, we've all got different views, different aspirations, different
expectations and that often, one person cannot speak on behalf of all disabled people."
Representative Langevin voiced similar sentiments: "I don't seek to be the sole
spokesman for disability issues, or in a sense, the poster-child for those issues." On the
other hand, it is equally misleading to paint the positions of Begg and Langevin as so
much a part of the mainstream that they can be free to represent all their constituents
without concern or reference to disability. The truth is that each of them in their
respective countries is unique - they are almost the only disabled people elected to high
levels of government--so, by default, they become spokespersons for disabled
individuals. As will be seen in a following section, both came to that recognition fairly
quickly after assuming the duties of their offices.
Florence Nayiga Sekabira's election to the Parliament in Uganda was a different process
than either of the above examples. Sekabira, who has a mobility impairment, explained
that since 1996, Uganda has embraced an all encompassing movement system of
government whereby there are no parties but instead, all groups elect their own.
Therefore, disabled people had to organize to elect their own leaders to the five seats in
Parliament reserved for them. It was totally up to the disabled Ugandans to decide how to
divide up the representation. They began by dividing the country into four regions and
then decided on exactly how they wanted the representation to be accomplished. For
example, they determined that they wanted one seat for women with disabilities and
therefore, it could be contested for only by disabled women. The other four seats were to
be contested for by both men and women to try to ensure balanced representation. Then
they organized Electoral Colleges to which each district in Uganda sends representatives.
When the time comes to elect MPs, each district is asked to send four people - one with a
visual impairment, one with a physical disability, one with a hearing disability and the
last with any other disability. They all come to the Electoral College in Kampala, draft
their manifesto, and whoever wishes to serve as a Member of Parliament goes to
campaign. Only disabled people can vote for their candidates and whoever they elect then
become MPs and do not require any endorsement from government. Minister Sekabira
explained that, as the elected person to Parliament on behalf of disabled women, she was
supposed to immediately focus on issues of disabled women but was not limited to that
topic. She was also supposed to focus on national issues while always being vigilant to
ensure that disabled women were considered in these other issues.
Ugandan model
The Ugandan model is perhaps the purest form of representative democracy of any of the
models discussed. Not only are the MPs there specifically to speak for disabled people,
but disabled people actually decide on just how they want to be represented in terms of
types of disabilities, gender and geographical districts and are the only ones allowed to
vote for their representatives. And while the disabled MPs do have national issues that
they are responsible for, their role is clear - they are to watch out for and represent the
interests of disabled Ugandans. On the other hand, as Sekabira points out, disabled
Ugandans have a lot of clout because not only do they vote for their own disabled MPs,
they also vote for other MPs in their communities where they live. As she says,
"Disability awareness in Uganda really even impresses me. When it comes time to debate
disability in Parliament, there's no 'who has a disability and who doesn't have it.' The
MPs themselves get it because in their constituencies, disabled people come to them, they
don't wait for us only, they also go to other Members of Parliament because they vote for
them too."
Another variation on a theme...
The two Scandinavians - Ann-Marit Saebønes of Norway and Bengt Lindqvist of Sweden
- present yet another variation on the theme of people with disabilities in elected
positions. However, it must be pointed out that each of them has held various leadership
positions that were both elected and appointed and they have even gone back and forth
between those two situations. For example, Lindqvist, who is perhaps best known for his
most recent role as the previous United Nations Special Rapporteur for Disability, was,
prior to that, a Member of the Swedish Parliament from Stockholm. In the middle of
serving in Parliament, he was appointed the Minister for Health and Social Affairs, a post
he held for six years, then was re-elected to Parliament. His second term would not have
been up until 1998, but he left in 1996 to assume the UN Special Rapporteur position. In
1991, Ann-Marit Saebønes was elected the Mayor of Oslo, Norway and served from
January, 1992 until December 1995. After her party lost, she became the Chairperson of
her party in the City Council. Currently she serves in an appointed position as Director
General of the Child, Youth and Family Agency for Norway at the national level. Both
Lindqvist, who is blind, and Saebønes who is an amputee, came to their leadership roles
from strong backgrounds in the disability movements of their respective countries.
Lindqvist's successful chairing of a project in 1980 called the White Book that looked at
the consequences of capping social expenditures got a lot of attention and was credited
with helping the labor party come back into power in 1982. As a result, the party asked
him to run for Parliament from Stockholm and he became the first disabled Minister in
Sweden. Similarly, Saebønes was tapped to be the Norwegian labor party's nominee for
Mayor, as a result of her prior work in the city as Ombudsperson on behalf of the users of
social services. In both cases, their names were put forward on the ballot by their
respective parties, not because they were disabled, but rather because they were well
known candidates whose names would be recognized by many of the voters. In short, the
skills they honed in leadership positions in their countries' disability movements provided
them with the tools to deal with mainstream social issues and it was their demonstrated
mastery of the latter that thrust them into public office.
Appointed Officials
As was the case for Bengt Lindqvist and Ann-Marit Saebønes, the national organizations
of disabled people (DPO's) have also served as the incubators for the careers of many of
the individuals interviewed for this report who are or were in appointed positions.
Certainly, in many of the African examples, the leadership has been recruited directly
from the ranks of the disability advocacy organizations. The reason is perhaps quite
obvious; those with disabilities who were skilled in advocating and lobbying outside the
government are in the best position to know how to work within the framework of the
system to affect changes. Susan Chitimbe, who has a mobility impairment, was appointed
as the Minister Responsible for Persons with Disabilities in the Office of the President of
Malawi and is a case in point. She says, "Because I am in government now, I understand
the problems of disabled people out there in society and I can take their concerns to the
Parliament."
Moreover, in Malawi, it is not just that a few people with disabilities are appointed, but
rather that the government has a very close working relationship with the disability
organizations. As Chitimbe explains, "The policy we have now is the policy that has been
written by non-governmental organizations, typically organizations of people with
disabilities working with the civil society, and government officials." To be clear, the
individuals who ascend to leadership posts from disability organizations are recruited as
much for their skills and expertise as well as for the fact that they are natural liaisons to
the disability community. Therefore they bring to the job, their own educational skills
and background; their firsthand knowledge of the issues; their credibility with the
disability community; and, armed with that portfolio, they are likely to have significant
clout with their non-disabled peers in government.
Bert Massie, a lawyer, wheelchair user and long-term disability advocate was appointed
the first Chair of the Disability Rights Commission (DRC) in the United Kingdom in
2000. Before being selected for the DRC, he had spent years with the Royal Association
of Disability and Rehabilitation (RADAR), where he had won a reputation as someone
who lobbied hard for the rights of disabled people in the UK and who knew how to work
with government to achieve his goals. Nevertheless, his selection was not simply a
question of being appointed. Instead, it followed the required process as a public
appointment. There was a stipulated open competition process involving civil servants
and an external examiner to ensure that the civil servants were being fair. The top
candidates' names were then sent forward to the Ministers who chose which of the three
or so names they wished to appoint. In the case of the Chair, the selection also had to be
approved by the Prime Minister, so Massie's appointment was essentially blessed by
Tony Blair.
Judy Heumann of the United States is perhaps one of the more fascinating examples of
someone who came into a high level position in government from a position of an
extreme outsider. Heumann, who contracted polio at 18 months of age, is widely
recognized for being one of the founders of the Independent Living movement that has
now become a worldwide movement. While still in New York, Heumann founded
Disabled in Action in the early 1970s, one of the country's first disability political action
groups, and then a few years later moved to California to help develop the newly-founded
but already influential Center for Independent Living in Berkeley.
In 1977, Heumann played a leadership role in arguably the seminal moment for disability
rights in the United States. The issue concerned some little, almost unnoticed provisions,
called Section 504. Tacked on the end of the Rehabilitation Act of 1973, Section 504
made it illegal for any federal contractor, or any other institution or activity that received
federal funding to discriminate against anyone "solely by reason of ...handicap." At some
point, the leadership of the US disability community realized what a powerful tool for
civil rights Section 504 could be. The problem was that the government, especially the
then Department of Health, Education and Welfare (HEW) had been stalling in
implementing the provisions and was even trying to draft new regulations that would
have weakened them. Some disability activists called for and staged demonstrations
around the country to protest and, in Washington, DC some protestors even chained
themselves to the desk of the then Secretary of HEW.
However, the most famous protest took place in San Francisco. Led by Heumann, about
120 disabled demonstrators occupied the 6 th floor of the regional HEW office for 25
days. Initially deprived of food and all access to health, cleanliness support and
telephones, they nevertheless held on. Their stories were picked up by the press, they
gained supporters and sympathizers all over the country and eventually prevailed on all
counts. Their story is now legend but it speaks volumes about the progress that the U.S.
disability movement achieved in a mere 16 years. Proof of that progress is that one of the
first disabled appointees tapped by the Clinton Administration in 1993 was Judy
Heumann. From chaining themselves to the desk of the Secretary of Health Education
and Welfare, people like Heumann were now occupying high level desks. As Assistant
Secretary in the Office of Special Education and Rehabilitative Services, Heumann
became one of the Secretary of Education's most trusted advisers and she used her
personal experiences to fight continually to improve access and outcomes for children
and youth with disabilities. Judy Heumann's experience in the U.S. Department of
Education helped pave the way for her current position as Disability Advisor with the
World Bank but she, like all of the others mentioned above, owes much to the advocacy
skills honed from earlier days in the disability rights movement.
II. As Leaders with Disabilities, What Have Been the Similarities of Experience?
Does having a peer or colleague with a disability raise the consciousness level of nondisabled politicians and bureaucrats? Do they gain appreciation of the abilities of their
disabled colleagues as well as awareness of the challenges of having a disability from
working with disabled leaders? At some point, do non-disabled politicians and peers
become so comfortable with working with disabled colleagues than they no longer see
the disability first, but rather the individual? Do disabled leaders gain acceptance as being
knowledgeable about topics other than disability? This section will explore these
questions through the perceptions of those in both elected and appointed positions.
Impact on their Peers
Effect on Non-disabled Colleagues
All those interviewed for this study stated unequivocally that their presence has had
significant impact in raising their non-disabled colleagues' personal awareness of the
issues surrounding disability, but many indicated that it was a protracted struggle to get
there. Several spoke about the initial difficulty as being one of credibility; i.e., not to be
seen as having attained the office simply as a kind of compensation prize or a form of
tokenism because of having a disability. Susan Daniels was appointed to her position
initially as Associate Commissioner, then later as the Deputy Commissioner for the
Office of Disability and Income Security Programs (ODISP) in the U.S. Social Security
Administration (SSA) in the Clinton Administration. In the latter position, she had
responsibility for the two largest programs of SSA, namely the old-age retirement
program and the disability programs. Daniels, who is hemiplegic and uses a scooter as a
result of contracting polio in infancy, holds a Ph.D. in rehabilitation. She talked about the
reception she got when she reported for duty at SSA. "I think everyone was enormously
uncomfortable with my disability, not only my subordinates, but my superiors and my
colleagues, they were all pretty uncomfortable with the whole thing." She felt that the
discomfort level of her colleagues stemmed from not knowing how to address her
disability or whether to address it at all. She stressed that they were all very kind, but
very unaccustomed to dealing with a person with a disability, particularly a superior. She
said she told them, "Don't worry about the disability-related stuff. I'll tell you when I
want you to do something, and when I don't want you to do it, I'll also tell you and no
hard feelings."
In addition, she felt that initially, at least, they regarded her appointment as a sort of
tokenism. "I think, at first, they assumed all kinds of things because of the disability that
weren't true such as I didn't have any idea about how the government was run. They
seemed like they didn't know I had any knowledge at all about disability issues, even
though everybody could see on my resume that I taught at a university for 15 years in the
area of disability." Further difficulties resulted when Daniels asked for certain work
accommodations that were not on the agency's usual list of accommodations such as
adapted computers, sign language interpreters or publications in Braille. Among the
issues was her need, for medical reasons owing to the paralysis, to have an upgraded
airline seat with more leg room and a footrest to elevate her legs and also to have an
attendant fly with her when she traveled. Among her hassles was the bureaucratic red
tape that required her to submit forms every 6 months from her doctor attesting to her
continuing disability (acquired at 6 months of age). In addition, she also had to work to
raise the awareness level of her superiors as to why she needed an attendant when she
traveled when she did not require one in her daily office work.
I think they thought they knew a lot about accommodating disabled employees - they had
a self-image that they knew how to do it and that they had done a fabulous job. So when I
went in and made demands that were not on their approved list of reasonable
accommodations, it threw them. Secondly, I was a political appointee not a career
employee, so that made it even harder for my superiors because they did not want any of
the political people to be perceived as taking advantage of their jobs to get more perks
than other people did.
That concern meant that Daniels was not supposed to advocate for herself lest it appear
that she was taking political privilege, a situation the she found "very difficult because
she was in no position to criticize or do anything about it." When the head of the agency
changed, Daniels was finally able to use the occasion of the new Commissioner to put her
accommodation needs on the table and to indicate that she would resign unless they were
met. She was then given all the requested accommodations and was promoted to the rank
of Deputy Commissioner.
For Susan Daniels, the education of her non-disabled colleagues came with a great deal
of difficulty that was probably exacerbated by their excessive concerns over perceptions
of political impropriety. Nevertheless, some of the problems were also driven by her
superiors' ignorance of disability conditions, coupled with mistrust of the motives. For
example, the non-disabled superiors would have understood if Susan needed an attendant
all the time during the workday, but they did not understand why she needed one only
when she traveled. They had to be educated that she required an attendant when she
traveled because she needed help to get dressed in the morning but once dressed, was
able to function without an attendant at the office. Similarly, they were able to understand
that her health required her to fly in an upgraded airline seat but, until it was explained to
them that she needed help with eating, using the lavatory and so forth, did not understand
why her attendant needed to sit with her in the upgraded section. All of these aspects
demonstrate that one of the impacts of having a disabled person in a leadership role is
really to educate the non-disabled to understand what having a disability entails on a dayto-day basis. Moreover, working with disabled colleagues helps non-disabled people to
grasp that each person with a disability is a unique individual whose needs cannot be
categorized simply by the nature of the disability.
Anne Begg's colleagues actually did the most intelligent thing to try to accommodate her
when they learned it was likely that she would be elected to a seat in Parliament - they
simply asked her what she needed. Begg describes being approached by the Chairman of
the Ways and Means Committee in 1997 and being asked if it looked likely that she
would win. When she said "yes" he asked her for a list of what she thought she might
need so they could be prepared. "I guessed I would need an office quite close to the
Chamber and to a handicapped accessible toilet. I knew I would need a comfortable chair
that I could get my feet up in. I wrote it all down and sent it off. The first day after the
election, I was shown into this wonderful, huge office that most MP's only dream about."
Similarly, Langevin reported that his election forced changes for individuals with
disabilities to serve in the U. S. Congress. "There have been physical changes since I
arrived here such as renovating my office, making some changes to the floor of the House
of Representatives, adding a new speaker's lectern in the well and removing some seats
on the floor. When I first spoke, I just used a lapel mike but then they changed to a
lectern that raises and lowers so that I can get my feet underneath and speak right from
the well like anyone else." As the elections of Begg and Langevin demonstrated, typically
the facilities have to scramble to create an accessible environment when someone with a
disability is elected or appointed. This reactive rather than proactive mode can also be
triggered by someone in office who is not disabled suddenly joining the ranks of the
disabled, whether temporarily or permanently. Moses Masemene, the Minister of Justice
in Lesotho who is blind was previously, in 1993, a Member of Parliament. He recounted
how a chief who had been an MP became disabled in a car accident and was home
recovering for the next session of Parliament. Masemene said:
During this Parliament session, I advised the Senate to facilitate his attendance so they
built a ramp to the Senate House. He now attends as a chief and although he is not in
charge of disability questions, he is disabled. I think that had an impact on the Parliament
because they had to make it accessible to him. With disability, social attitudes don't
change fast but they do when it becomes necessary.
Elected to the Swedish Parliament the first time in 1982, Bengt Lindqvist predated, by
more than 20 years, the current group of disability leaders who benefit from today's
technology. He commented that his presence contributed to making disability more
visible in the political process. "I came with my white cane, every time we had a voting
procedure, I came in, so everyone saw me, everyone reflected." His peers and colleagues
asked him how he managed to do his job, especially how he got his information a critical
issue for blind individuals. In an era before the Internet and accessible websites, he was
provided with two secretaries to assist him. They recorded a lot on tape for him and the
important texts were produced in Braille. They also had bought him a scanner. "We had a
colossal machine, it's now in the museum because the Parliament bought it for half a
million crowns and it took two people to carry it. You know now a scanner is about 2,000
Crowns and the size of a pack of cigarettes!" By the time he was reelected after serving in
government for 6 years, the Parliament was completely computerized and he no longer
needed the two extra secretaries that had constituted a 20 percent additional cost over
those of other MP's.
Comfort Level Issues
As Susan Daniels pointed out, much of the adjustment problem she encountered with the
non-disabled personnel at SSA stemmed not from malevolence or prejudice, but rather
from unfamiliarity. Judy Heumann found very similar problems when she took up her
position with the World Bank. She described being invited to a meeting of high level
Bank personnel and being asked by the caller if she could come to the main building. At
first, Heumann thought maybe she had a different building in mind but then quickly
realized that the woman was concerned about Judy's ability to get to the meeting because
she uses a wheelchair.
I use that as an indicator of how people's lack of exposure to those of us who have
disabilities is so significant that they are still continually thinking that they have to
compensate by coming to me because I can't go across the street. In fact, of course, in my
motorized chair, I can go any place anyone else can go provided there are no steps, but
they don't see that. This person had actually seen me before but people cannot distinguish
between those who might have difficulty getting across the street and those who can.
When I first came to the Bank, I was going around to senior leadership and I realized that
their schedulers would say that these vice presidents would come to my office. Having
worked in the federal government, I understand pecking order and I knew that vice
presidents don't come to advisors, advisors go to vice presidents. So I finally just said to
my staff that I would not have them come to my office, I would go to theirs because they
needed to see that I could get to their offices.
Education of non-disabled peers is one thing, but for disabled leaders to become effective
in their roles, they also found that they needed to establish a comfort level with their nondisabled peers. Heumann tells the story of being in a senior staff meeting early on in her
tenure at the Department of Education where one of the senior staff said that if they didn't
do something, "they would be cut off at the knees." Heumann, whose duties included
administering the Rehabilitation Services Administration, quickly retorted, "Oh, and then
you'll send them to me for rehabilitation services." The person chairing the meeting
became immediately embarrassed and said, "I'm so sorry, we're learning the appropriate
language." Heumann said she literally put her hands like a time out request, laughed and
said, "I was joking." She said it took some time however before the comfort level
developed that fostered progressive dialogue. "It took a while before people outside my
office really accepted me for who I was and could listen to what I had to say in an equal
way and agree or disagree based on substance, and not based on their feelings about how
they would affect me."
The comfort level issue is also sometimes closely linked to cultural prejudices. For
example, Wilma Newhoudt-Druchen explained that when she first entered the South
African Parliament, other MP's did not speak to her because they didn't know how to
approach a deaf person, but after awhile they would come up to her and ask her
questions.
They would come to me and ask me certain signs and so they became more aware of deaf
issues and sign language. Many of the black MP's - because the black culture does not
accept disabilities very easily - when they go to their constituencies, they meet parents or
other disabled people and now they have become more aware. Some of the MP's family
members are disabled and now they will tell me about them and are proud of the fact.
They will tell me about their brother's child who is deaf or blind or disabled in some way.
Florence Nayiga Sekabira of Uganda also talked about how her presence in her prior
position as an MP and currently as the Minister of State for Elderly and Disabled Affairs
has helped change cultural biases toward disabled people.
In our local language, whenever someone saw a disabled person, they would say that
person is a "cata yamba" meaning someone who is helpless. Now because many disabled
people are serving on local government councils, the term has also come to mean
"councilor." So the public had to change the language because when they meet a person
with a disability, they no longer know whether they are talking to a councilor or any other
person. When I was elected as an MP in 1996, an education officer in the Ministry where
I work today was addressing some government people about the need to change this
"helpless people" term. He pointed out that as an MP, I would be entitled to a vehicle and
if I came upon one of them stranded on the road and gave them a lift, how would they be
able to explain that their rescue was dependent upon a helpless person?
Impact on the Public
Role Models
When asked about what they thought the impact was of their being in high level
positions, many of those interviewed were quick to mention the satisfaction they receive
from knowing that they are serving as role models to adults and children with disabilities.
Whether from developing or industrialized countries, the comments on this issue were
almost identical. For example, Florence Nayiga Sekabira of Uganda said,
We're acting as role models to many -- to the young people with disabilities and other
disabled people and even to parents who have children with disabilities. It gives them the
knowledge that having a child with a disability is not a curse as it used to be thought.
Instead, that if their child's potential is developed, she can contribute to the family and to
the nation at large.
Anne Begg of Scotland said about being an MP,
It breaks the taboo that if you got a disability, you can't handle a high pressure job like
serving in Parliament. My constituency is over 500 miles away from Westminster, so I'm
flying up and down every week. So if someone with my kind of physical impairment can
still lead an incredibly busy life, it shows that it can be done and it's up to other people
with disabilities to come in and do it.
Begg's comments were almost identically echoed by Rep. Langevin's of the US,
I would hope that my election to Congress has served to inspire and motivate other
disabled people to serve in government, to know that they can achieve an election to
office or any other goal or desire they have to work in any field. I like to believe that
many of the lives that I touch, although I may never even meet these people, maybe just
seeing me doing what I'm doing will hopefully help them know they can do the same
thing.
Spokespersons for the cause
One aspect that the study's leaders encountered across the board was that they were soon
sought out by their non-disabled peers for their expertise in disability. For those whose
election or appointment was, in fact, expressly to represent those interests, such as some
of the Africans, that role was understandable and appropriate. However, some like
Charlotte McClain-Nhlapo went even further to ensure that disability issues had a voice.
McClain-Nhlapo, is a lawyer, currently Commissioner responsible for children's rights
and disability rights on the Human Rights Commission of South Africa and is a wheelchair user. She explained that when she first came to the Human Rights Office, there was
a person with a disability who had been appointed through a process of disabled people
putting his name forward and he then became the Commissioner for disability issues.
I came in on the issue of child rights but obviously even in that regard, the issues that
were of concern to me were those relating to the rights of children with disabilities. So
for me it was very important to have somebody in my office who was responsible for
disability issues and who was disabled, but also, at that level of rights issues, to be able to
introduce the disability perspective to it. I think it is important to have a person who is
disabled in a position like that and not to have a non-disabled person talking about
disability rights. That way, you have somebody there who can motivate for disability
issues at the level of developing policy on a cross-cutting basis.
However, for those whose elections were not related to representation of disability issues,
the situation was far more complex and their personal reactions to that role, more
conflicted. For example, as mentioned above, both Rep. Langevin of the US and the UK's
MP, Anne Begg, were eager not to be seen as spokespersons for disabled people.
However, after assuming their duties they realized that, as essentially the sole persons
with disabilities in their positions of governance, they had an almost moral responsibility
to weigh in on disability issues. As Langevin says, "Certainly when I speak on disability
legislation, I have credibility on the issue. I live disabilities, I grew up with a disability,
so therefore I can convey not just what I think about it, but also my experience on the
issue to my colleagues." Begg echoed those sentiments. "The longer I was an MP, the
more I realized that I obviously had an expertise and a knowledge that many others didn't
have and that I would be doing a disservice to large numbers of people if I didn't speak
out from my own experience." Ann-Marit Saebønes' initial viewpoint about her disability
differed from Langevin's and Begg's. Because her disability is less obvious, she describes
how she deliberately brought it up.
When I was elected Mayor and even when I was running for office, I had a lot of
interviews. I talked very freely about my disability because I think it is important to do
so. Many people don't realize that I am disabled when they see me because I can walk
fairly well with my leg, and people do not see my hand at first. So in interviews, I talked
about what it was like to grow up with a disability, what kind of troubles it caused and
what can be expected from society. So I never tried to hide it, on the contrary, I used it
actively.
All three of these elected officials reported that once they took on the issue of speaking
for disability issues, they have usually been very successful with their colleagues. As
Saebønes said, "The effect my disability had in the City Council was that when I went to
the Chair or made a speech and said we are suggesting this or that, it was very difficult
for the other parties to reject it."
III. What Has Been the Effect on Policy and Legislation?
The core question of this study is whether having people with disabilities in high
leadership positions really makes any difference? Do policies change; do governments
develop a "conscience" about what it means to be disabled? Perhaps, more importantly,
do politicians and other non-disabled peers gain an understanding and awareness so that
all proposed programs and policies eventually are screened through a disability lens? This
section begins with the disability lens question because, as Judy Heumann points out,
disabled people cannot do it all -- they must educate and make advocates of their nondisabled peers. The second aspect that this section will examine in some depth is how
disability advocacy is structured within the framework of advising or informing the
government on disability policy issues. In exploring this question, the report will move
from a micro to a more macro perspective. The individuals interviewed are, for the most
part, not the ones already mentioned in this report but instead were selected as
spokespersons for their organizations. Therefore, they were asked not so much about their
experiences from a personal perspective, but rather about the structure of their
organizations, how these interact with government, the role that they play and what
quantifiable outcomes have been achieved.
Advocating for a Disability Lens
One of the paradoxes mentioned by some of the leaders in this study was that, at a certain
point, having earned the support and trust of their non-disabled peers, the latter tended to
want to "dump" anything seen as a "disability problem" on them and they had to educate
and persuade them to take responsibility. For example, Bengt Lindqvist described a fairly
common situation he encountered as an MP,
There's no doubt than my colleagues in the government - there were 22 Ministers - very
often came to me because they knew I was a disability advocate and said, 'Well, this is a
disability issue, this must be yours.' I would have to answer, 'No, it's an education issue
but it happens to be a concern for some people with disabilities, but it's your portfolio.'
Sometimes I had to fight to make them take their responsibility and I think that was an
education process between us because they wanted to give it all to me... so there was a
learning curve.
Judy Heumann made a similar point concerning her efforts at the World Bank.
I think what's also important is that we get other people who may or may not be affected
by disability to argue our points and I think that's where we gain legitimacy...Everything
should be perceived of as needing a disability lens. In the end we may not prioritize that
we can do everything, but any office of the Bank needs to ask if disability is a component
of the work we could be doing here. I recently met with infrastructure people on a series
of issues that they are dealing with. Maybe one of the issues didn't really concern
disability -- building dams or something like that -- but of the six issues, five are related
to disability. If you cannot do all five at once, then let's start with one or two so that
people get a better understanding of what we mean when we say "to include a disability
lens" so they begin to learn by experience what to do. So things are slowly beginning to
happen that way here. For example, I was at a meeting where they were laying out an
agenda and somebody asked 'where was disability?' and I almost fell out of my chair. I'm
actually pleasantly surprised given the few disabled people who are here at the Bank, that
disability is not always being looked at only because of our instigation.
Charlotte McClain Nhlapo also commented about the need not to always be the only one
carrying the water for the disability cause.
Not too long ago there was a big conference on disability and the right to work and
employment. I particularly thought it was not a good idea for me to go to that. I asked one
of my colleagues to do it because I want the other Commissioners also to get an
understanding of the issues that we are dealing with, so that when they talk about
equality, they too can talk about disability and not necessarily to have me there to do that.
Differing Structures for Advocacy
Increasingly around the world, politicians and therefore governments have begun to
recognize and respond to the issues surrounding disability. Whether because of the efforts
of disability advocacy groups, or in response to economic pressures stemming from
swelling disability pension rolls or because of human rights concerns, whatever the
reason, many governments have taken steps to try to address the myriad issues through
specific disability policy initiatives. One rather common response of several countries in
the last 5-10 years has been to create offices specifically responsible for disability issues
across the board or for the related human rights aspects of disability. For example, among
the countries in this report, Mexico and South Africa have both established specific
disability offices in recent years. The other general model used by governments to inform
the disability debate is through the use of advisory bodies that typically are independent
of government and often represent a cross-section of disabilities. These latter bodies may
be an actual federation of disability organizations or, instead, may simply be an ersatz
umbrella organization in that it has no actual members but nevertheless does speak for all
disability concerns. As has been mentioned briefly in an earlier section, in some
countries, legal protections concerning human rights issues for people with disabilities
are ensured through specific authorities established for that purpose. Finally, some
countries such as Malawi and Uganda have elevated previously elected MPs to the status
of Ministers specifically for disability issues. The sections that follow will examine in
more depth how these different models function.
The Specific Disability Office Model
Sebenzile Matsebula, who is the Director of the Office of the Status of Disabled People in
the office of the President of South Africa and a wheelchair user, mentioned that South
Africa was the first country to have such an office at the executive level. "Since then
Mexico is the other country that has a similar structure and more recently, Namibia has
adopted a similar model in the office of the Prime Minister." Matsebula explains that the
functions of the office are "to coordinate, facilitate, monitor and evaluate programs that
serve or are designed to integrate disability into mainstream society." The office does not
deliver services or propose legislation - the former are the responsibility of each Ministry
or governmental department and the latter that of the Parliament. Instead, "our role is to
make sure that what is supposed to happen actually does happen. In a sense it's like a
policing body." She explained that the positioning of the unit in the office of the
President was deliberate.
A Minister that gets a direction from the President on a particular issue on which he is not
serving or performing, will certainly be forced to comply. Otherwise, if every Minister
was left to do whatever he wanted, there's always a reason (sometimes a legitimate, valid
reason) why they cannot do it. But in this case, it's set up to ensure that what the
government sets as policy about integrating disability into mainstream society does
actually happen.
The goal of overall coordination is also mentioned by Victor Hugo Flores as the rationale
for the structure of the office in Mexico. Flores, who uses a wheelchair, is head of the
Office of Representation for the Promotion and Social Integration for Persons with
Disabilities said the creation of the office was the specific desire of President Vincente
Fox. Fox initially asked the heads of 16 different offices that he created to coordinate
policies over specific issues to develop a master plan on what they were going to do, how
they were going to do it and with whom. There are weekly cabinet meetings with the
Ministers and the coordinating offices. "Our office that coordinates public policy towards
disabled people asked in one of these meetings that each ministry develop one specific
program including or focusing on disabled people."
Flores's office in turn created a National Council on Disabilities that includes the five
main Ministries where disability issues would figure most prominently, i.e., Education,
Communication and Transport, Labor, Social Affairs and Health. Each Minister assigns a
Vice Minister who is responsible for operation of this National Council. In both the South
African and Mexican examples, it is clear that placing the disability office in the office of
the President was intended to send a signal to all Ministers that disability was a top level
priority and that coordination and cooperation around these issues was a requirement.
However, in addition to the idea that each MP knows that he or she is supposed to be
thinking about disability and therefore to be promoting a mainstream agenda,
Matsebula describes an additional "insurance policy" aspect to the South African
approach of also having Members of Parliament who are themselves disabled. "The
whole idea of having Parliamentarians with disabilities is because they experience
disabilities. So someone without a disability might want to say "ok, we have to ensure
that disability is part and parcel of this particular legislation but because they are not
disabled they may not necessarily want to make sure that that particular piece of
legislation actually goes through.
Independent Advisory Bodies
In the United States, the National Council on Disability (NCD) is an independent Federal
Government agency tasked with advising the Administration and Members of Congress
on all matters related to disability policy. Initially created in 1978 as a council of
Presidential appointees to advise the President, it was located administratively within the
Department of Education. It was so ineffective that by 1983, when hearings were held to
consider its reauthorization, most of the disability community and many others, including
Lex Frieden, recommended ending it. Instead, they recommended a Blue Ribbon panel to
advise the President on disability issues. The Congress took both suggestions, combined
them and made the Council a small, independent agency, (with a current budget of about
$3 million), so that it had the freedom outside of the Administration to give advice and
publish findings and advice. Frieden, who became the Executive Director for the Staff at
NCD through the 1980's, currently serves as Chair of the Council whose members are
appointed by the White House and which reflect the majority party. The Council sets the
priorities and goals that NCD will follow and staff carries out their directives. Frieden is
quadriplegic and the Council's 13 members are either persons with disabilities (typically
well-known advocates), professional working in the field or parents of disabled children.
In addition, it is commonplace that the Council members also reflect diversity in gender,
ethnic background and types of disability. Frieden remarked that though NCD has no
formal or legislative obligations to consult with disability groups or provider groups, in
reality, it does just that.
NCD has always done an exceptional job of involving and working with and consulting
with the disability NGOs, probably not a very good job always of consulting with
provider organizations and some others but by its very nature and history, has had a bias
towards a consumer viewpoint. The job of the Council is to make recommendations on
disability policy to the President and the Congress. Those recommendations are only as
good as they are valid and they are only valid if they are substantiated by good data, by
good rationale. In order to get those data and that rationale, you have to do consultation
wit the community, you have to study the literature and you have to synthesize all of that.
In Norway, Lars Ødegård is Secretary General of the Norwegian Association of the
Disabled (NAD) which is not an umbrella organization but rather a member-based DPO
with 12 affiliated organizations. "In Norway, with a population of 4.5 million, we have
this nearly ridiculous situation where we have 115 different, separate organizations for
disabled people in this small country. So we decided 15 or 20 years ago that within NAD
we would have affiliated disability-based organizations within our organization. Our
main structure is through local branches - we have approximately 360 local branches
organized through 19 regions and a national body that contains this structure and the 12
affiliated organizations and a youth organization as well."
Given what a small country Norway is, NAD's size and scope is even more remarkable in
that it does not even include mental disabilities. One of the 12 affiliates does represent a
parent's association where many of the children have multiple disabilities, but essentially
NAD is an organization for physically disabled persons only, probably owing to the fact
that the organization is 73 years old. NAD works with the Norwegian Government
through the governmentally-appointed Council on Disability which is supposed to advise
the government on disability issues. The different ministries request advice from the
Council but, in addition, the Council can also raise issues it wants addressed. However,
Ødegård, who is a wheelchair user, stressed that the main lobbying work is done alone,
not through the Council. They may be asked by the government to be part of a committee
to create a basic document for a Governmental White Paper for Parliament but then, they
will also prepare their own paper on whatever the issue is and then lobby for it within the
Parliament and within every Ministry that deals with disability issues. The organization
has its own journalist and is working to raise awareness through the media on issues that
they are eager to focus on within the Ministries or the Parliament.
NAD, which has 70 full-time employees, raises about 80 percent of its operating budget
through its own income-generating project. Another 5 percent is from membership fees
and the remaining 15 percent is from government. Their main source of income is
through running a national lottery but they did not tell people that they were behind it for
fear of creating a charity approach. They also had slot machines but the government will
take them over and the organization will have to find new ways to cover the shortfall. In
addition to its domestic lobbying and advocacy, NAD is also heavily involved in
international development work as part of an alliance with other disability organizations.
Disability Rights
Some of the countries have established specific authorities to deal with disability rights
issues. As mentioned, Bert Massie was appointed the first Chair of the Disability Rights
Commission (DRC) in the United Kingdom when it was established in 2000. The DRC, a
by-product of the Disability Discrimination Act (DDA), has a great deal of authority to
persuade and induce as well as enforcement powers but only on civil rights legislation,
not on human rights law. According to Massie,
This lack of enforcement power has made it difficult for us in representing people in
health services because in civil rights, like access to shops, restaurants, employment
issues, you can find a comparator. You can say had this person not been disabled, s/he
would be treated in one way but because s/he is disabled, they're treated in an alternative
way which is less favorable. As that breaks the law, you can bring enforcement powers to
bear through the courts, tribunals, and also formal investigations. We have dormant
powers on human rights which the government has gone ahead and introduced - it's in the
Act but the Minister has refused to sign off on it. So that makes it very difficult to take
cases in the health services when you are talking about people's right to dignity because
in many cases, the health services do treat people with appalling indignity and arrogance.
While it's not the everyday experience, it happens sufficiently frequently.
Massie said the DRC will next formally investigate how the health service treats people
with learning disabilities, who, he says, tend to die much younger than other people. As
Massie describes it, too often people with intellectual disabilities are ignored or
mistrusted by doctors when, for example, they allege having pain. The tendency is to
assume the allegation of pain is psychological just as the allegations of pain by people
with mental illness tend to be dismissed as having an emotional cause. While the DRC
can investigate these types of issues, it has no authority to bring legal cases because of
not having human rights powers.
Nevertheless, the DRC has been quite effective in the civil rights realm where it has
advocated successfully against employment discrimination and more recently has been
instrumental in public access issues for example in pushing for more accessible transport
such as the new taxis in London. However, new plans to amalgamate the DRC into one
larger Commission that is supposed to have oversight over all discrimination issues
leaves many disability advocates quite concerned about whether their issues will get lost
in the shuffle.
According to Massie, "We're going to have one major commission, that they think will
start around 2007, that will amalgamate the current Commission for Educational
Equality, the Equal Opportunities Committee, a commission which deals with gender
issues and the DRC and will also expand the role to cover age, sexual orientation and
religion." Massie said that the original proposals were not well-thought out at all and
would not have worked. Essentially, the government wanted to put everything together
and put one person over it, based on an argument that there was no longer any need for
disabled Commissioners since everyone was fighting for a common cause.
The problem with that view is that for most discriminated groups, they're fighting the
attitudes or behavior of the people, but disabled people are also fighting the whole
environment and it's much different. One of the debates has been that disabled people
have multiple identities - they're disabled, they're Jewish, they're Black, they're Gay or
Lesbian. I said, 'No, people don't have multiple identities, they have many facets to one
identity. If you can't go down steps because there's no lift or elevator, then it doesn't
matter if you're a Muslim or Hindu.' The solutions are not simply about being nice to
people - many who try to be nice to disabled people will still get it fundamentally wrong.
So we objected and said disabled people had to keep control of the disability agenda.
Massie and the DRC lobbied and campaigned and made their case successfully. The new
body will have, guaranteed in law, at least one disabled Commissioner. It will also have a
committee, of which half the members must be people with disabilities that will deal with
disability policy as a new organization. Massie and the DRC are still working to ensure
that the disability unit will be properly resourced and staffed but they have successfully
made the case that discrimination concerning disability requires unique approaches and
solutions involving the expertise and experience of disabled people themselves.
As mentioned, in South Africa, Charlotte McClain Nhlapo's portfolio as a Commissioner
on the Human Rights Commission includes disability issues as well as children.
According to her, people are beginning to introduce disability almost automatically
because almost from the beginning of the Commission, there was somebody with a
disability at the Commissioner level. The Commission sends out protocols to all the
government commissions to find out what progress is being made in terms of the rights
that are contained in the South African Bill of Rights and they specifically ask questions
about vulnerability and vulnerable groups. One of the Commission's functions is to
advise government on legislation whether actively to suggest new legislation where there
are gaps or reactively to comment on bills. McClain-Nhlapo said that generally the
Ministries are well-attuned to disability and issues of access and human rights and she
attributes that to the fact that South Africa has an integrated disability strategy. However,
the weakness according to her is that while the governmental policies may indeed address
the issues of disability, in actual practice, it has been very different. The Commission has
a component of legal services that can receive complaints from any legal entity or from
the public on all issues related to the Constitutional mandate that would include
disability. However, in actuality, very few complaints are lodged. As she said,
I must say I have been disappointed in that regard because we have had very few
complaints related to disability discrimination. I can understand why historically. You are
looking at a segment of society that has been excluded, that hasn't really had a voice and
therefore, is not really aware of what is out there even within the new dispensation. So
people don't use the systems that are in place.
She explains that disabled South Africans either do not know that the system is in place
or do not know how to access it. So, on the one hand, she feels the Commissioner should
do more to raise awareness among disabled people about their rights, but on the other
hand, she fears raising expectations beyond the abilities of the Commission. The
Commission does have the authority to take someone to court and can take punitive
action, although is yet to do so, but does not have civil authority to sue for monetary
damages, for example.
Moses Masemene who is the Minister of Justice in Lesotho reflected on the impact he has
had. "When I first came to Parliament in 1993, it was "How did this blind man wind up in
Parliament?" But with time I became a force, I compelled them to dialogue, I engaged
them in discussion so that attitudes of MPs toward disabilities have been transformed." In
his current role, he describes himself as being a sort of nexus between the disability
movement and Parliament/government. While Lesotho has not yet reached the point of
having a dedicated office on disability rights or specific laws, his office can and does
propose amendments to certain sections of laws. He mentioned as examples, building
control laws about accessibility and adding a section to a law on sexual offensives that
specifies protection of disabled people from rape.
IV. Measurable Progress
It would seem that the disabled leaders interviewed for this report universally agree that
their presence has had a positive impact on the attitudes of their non-disabled colleagues
as well as on the general public. However, the last area to be explored is whether it has
also produced any tangible outcomes as far as policies or programs to benefit people with
disabilities? The disabled leaders were asked to name what they considered to be specific
positive outcomes of their being in positions of governance. What follows are some
selected responses that are exemplary but by no means comprehensive. Readers should
refer to the complete interviews elsewhere in this report for further examples and more
details.
Ann-Marit Saebønes cited one of the last things she did, not as Mayor of Oslo, but rather
as the opposition leader before leaving the City Council. "I suggested that all the things
that the City Council buys should be adapted so that they could be used by disabled
people so that they would not be discriminated against or excluded. To be honest, I'm not
sure the Council knew what they were doing, but they voted for it. So it's there."
Congressman James Langevin pointed to two specific pieces of legislation where he felt
his leadership position was influential. The Help America Vote Act ensures physical
accessibility to the polling places as well as the availability of accessible equipment at the
polls. Secondly, the Foreign Appropriations law in 2004 added new language requiring
that any time US foreign assistance funds are used overseas, they must be used in a way
that is beneficial to people with disabilities. Specifically, any new construction must be
done in a way that is accessible and any reconstruction to the degree possible and all
programmatic funds must promote inclusion of people with disabilities. Moreover, the
Department of State must produce written reports annually on how well they are doing at
meeting these goals. This language marked the first time such goals were part of any
foreign appropriations requirements and Rep. Langevin's efforts helped gain the
necessary support needed in the House of Representatives.
Within the National Council on Disabilities (NCD) that he helped create in Mexico,
Victor Hugo Flores was able to develop seven different programs that did not exist before
by working with the appropriate Ministries. In essence, the NCD serves as a sort of
clearing house and spur to the Ministries by finding out what disabled people need, then
working with the Ministry to help develop the specific programs. One was a program for
prevention and rehabilitation inside the Ministry of Health for all the national health
system. Flores explained that the health system in Mexico is actually composed of the
health systems of five main institutions: the Social Security Mexican Institute; Social
Security for State Workers (i.e. federal government workers); Mexican Petroleum
(PEMEX); the Navy; and the Army. Their initiative created an awareness program
among doctors to prevent disabilities as well as a program to ensure that hospitals are
accessible. The last program created within the framework of the National Council was
presented in September of 2003 and is a rural area program to support persons with
disabilities. It involved a change in the law for the ministry that is responsible for all the
rural and agricultural areas. The Mexican Congress assigned $250 million to this specific
program to provide training and technical support including technical assistance for
projects and for the purchase of equipment. The training is in entrepreneurship, to
encourage disabled people in the rural areas to develop their own small businesses. The
applicants submit proposals for what they would like to do, for example to grow
mushrooms, and then the program pays to train them in both the technical requirements
of growing mushrooms as well as the business aspects of micro-enterprise.
In her position as Deputy Commissioner at the Social Security Administration, Susan
Daniels was able to influence two very key pieces of legislation benefiting people with
disabilities. Arguably the most extensive and well-known is the Ticket to Work and Work
Incentives Improvement Act or what is sometimes simply referred to as the Ticket.
Daniels said she had a specific strategy in mind when she started at SSA and it was
simply, "I cannot be the problem, I have to be the solution. I never told anybody at SSA
that they were going about things wrong, what I did was make SSA hear it from other
people. I amplified the voices of disability constituents." Daniels sponsored numerous
forums so that the voices of consumers, i.e. people with disabilities and especially those
on benefits, could articulate to the agency exactly what the barriers were to working or
returning to work after acquiring a disability. One of the many issues was the lack of
consumer choice. Prior to the advent of the Ticket, the only possibility a disabled
beneficiary who wanted to try working had was the State Vocational Rehabilitation (VR)
system. However, VR is very selective in who it serves, there are often long waits for
service and in general, it had a very poor track record for helping SSA disability
beneficiaries with their employment goals. The Ticket created financial incentives for
private sector providers to get into the business of rehabilitation. In doing so, it also
shifted the control to the hands of disabled people themselves because, rather than being
the passive recipients of services, instead, as holders of a Ticket which is a kind of
voucher, they decide if they want to use or not, when they want to try using it and with
whom. The provisions of the Ticket are too complex to discuss here but suffice it to say
that it was landmark legislation that has been rolled out over the entire United States.
While there are still problems with it, it is a work in progress that is innovative in the way
it attempts to resolve many longstanding barriers to work or return to work by disability
beneficiaries.
Daniels' other policy success was in some ways even more remarkable because it came in
under the radar but succeeded in accomplishing a long-desired goal of disability
advocates. The test of ability to work by SSA disability beneficiaries is called Substantial
Gainful Activity (SGA) and was essentially a very low monetary amount per month that
bore no relationship to any other measure or index such as the minimum wage. Worse
yet, it was not adjusted based on changes in other measures, but rather was adjusted on an
ad hoc basis which resulted in sometimes 8 to 10 years between adjustments. Finally and
perhaps most unfairly, blind beneficiaries did have their SGA updated on a constant basis
resulting in great disparities over the years between what a blind disability beneficiary
could earn versus what a non-blind beneficiary was allowed. Hence, disability advocates
argued that it was actually a disincentive to attempting real work because it was set so
low, that earnings under that amount were of little value to being self-supporting. For
years, advocates urged that it be adjusted on a regular basis and that the adjustment be
linked to a real measure. However, it took Susan Daniels, with the blessing of SSA's
Commissioner, to engineer the change in 2001 that resulted in the non-blind SGA being
automatically adjusted based on increases in the national wage index. Again, Daniels
encouraged the disability community to advocate for themselves on this issue. She alerted
them to the fact that a request for comments was published in the Federal Register. She
got the notice for comment posted in every disability location.
I went around giving people labels that had SSA's address on it. I told them, if you don't
think this is right, just put it on a postcard in one sentence and then mail it to SSA. We
got 3,500 responses, seven or eight is common, 200 for a really big regulation, but we got
3,500. I said, we need to have an uproar for the Commissioner to walk into the Office of
Management and Budget and get them to sign off on this regulation, so we created one
for him. He loved it because we were amplifying the voice of the disability community
and helping to organize it in a way that it could be heard.
Florence Nayiga Sekabira believes that she and the other four Members of the Ugandan
Parliament who have disabilities has helped shape disability-friendly policies. Now as
Minister of State for Elderly and Disabled Affairs, she sits in the Cabinet where she
credits the system "whereby whatever goes through Cabinet is supposed to be disability
sensitive. Then Parliament will look at what the Cabinet has provided and if they wish to
improve on it, then they do so." Sekabira explained how this system has resulted in
access to education for disabled children:
In the case of universal primary education, that's a program created to ensure that every
child below age 18 has the opportunity to go to school. Government meets the tuition, the
parents have to provide only school fees and money to feed their children and also to buy
books. We help to ensure that children with disabilities are provided for because when
this program was initially established, it was to pertain to only four children per family.
Those would go to school for free, i.e., without paying tuition fees. We insisted that in a
family where they have children with disabilities, they should be given priority among
the four. So we helped establish that policy.
V. Concluding Remarks
The presence of individuals with disabilities is clearly having an impact around the world
in many different ways. Non-disabled leaders are learning about the issues from people
who have lived the experience. In that process, non-disabled politically involved
individuals are also becoming aware of the competencies of disabled people and are
learning not first to see the deficit but rather to appreciate the abilities of their disabled
peers. Thus slowly but surely, non-disabled politicians and bureaucrats are learning to ask
the right questions and to scrutinize new policies and programs through a disability lens.
As leaders, people with disabilities also acknowledge their position as role models for
millions of disabled children youth and adults who can aspire to similar or even greater
goals.
Finally, it is possible to point to many concrete pieces of legislation and new policies as a
direct result of having disabled people in position of leadership. The problem is that thus
far, there are simply not nearly enough disabled leaders around the world or in any given
country. Until now, those disabled leaders who have gained positions of governance are
still rarities - the odd exception rather than something commonplace. If one looks at the
general experiences of women or minorities who have attained leadership in political or
corporate circles around the globe, it is likely to be quite some time before individuals are
simply leaders with disabilities rather than disabled leaders, but it is certainly a goal very
much worth pursuing. In the interim, as Judy Heumann suggests, "it helps to gain
legitimacy when disability issues are argued not just by disabled people, but by those
who may or may not be affected by disability because, then these issues become more
mainstream."
Analysis of Reauthorization of U.S. Individuals with
Disabilities Education Act
An IDEA analysis from the Disability Rights Education and Defense Fund (DREDF)
(preserveIDEA@dredf.org)
All Over But the Shouting
IDEA was reported out of the conference committee on Wednesday, November 17, 2004.
The House passed the conferenced bill with a vote of 397 - 3 on November 19, and the
Senate agreed to it by unanimous consent on November 19. The IDEA has been reauthorized.
What Did We Lose and What Did We Gain?
The bill we ended up with looks very much like the Senate bill, with a lot of refinements
that occurred over the last months and weeks. DREDF will do a complete analysis of the
law that is emerging and what it means for our families and supporters and children, as
well as a post-mortem of the process, in the fullness of time. But we can say now that the
voices of parents and advocates were heard loud and clear, that we DID make a
difference in the outcome, and that, given the political and strategic circumstances and
the situation on the Hill during this reauthorization process, our hard work and dedication
paid off in getting our children the best possible bill we could get. Is it perfect or ideal?
No. Is it fully funded? No. But we need to keep fighting and not be defeated by any sense
of despair or failure.
We lost some protections. It remains to be seen how "measurable annual goals" and
quarterly progress reports will work to replace short-term objectives and benchmarks; up
to 15 states may be granted an opportunity to pilot optional three-year IEPs; students who
violate school codes will have to remain in an interim placement pending an appeal of the
manifestation determination (a hearing must occur within 20 days).
Yet we also held back ferocious assaults on discipline provisions and due process
protections, and we prevailed in several key areas, from an increase in the number of
certified special education teachers to expanded access to assistive technology to
sanctions on states that do not comply with the law. And we retained continued services
for students moved to alternate placements, attorney fee reimbursements for parents who
prevail in due process hearings, and functional behavior assessments and manifestation
determinations. As we said in RRN #30 on September 30, 2003, there are also key
improvements in this bill: provisions for alternate assessments, positive behavioral
supports, school to life transitions, assistive technology, and personnel standards.
In RRN #31, from November 6, 2003, we wrote: ". . . we should consider ourselves as
having dodged a bullet if we can emerge from conference with a bill more closely
resembling the Senate's than the House's." We worked hard to dodge that bullet, and we
succeeded. A great deal of the credit for what we achieved goes to Connie Garner,
Senator Kennedy's Disability Policy Advisor and chief staffer on the HELP Committee
for IDEA. A parent herself, Connie Garner is a true champion of children's rights, and the
parent and advocacy communities are indebted to her. We were happy to hear Senator
Kennedy acknowledge her work both in his conference speech and on the Senate floor.
What Happens Now?
Everyone's efforts resulted in the bill being better than we feared, but not as good as we
would have liked. The first thing to say is that the voices of parents were raised, we were
heard, and we made a difference.
In the main, the principals of IDEA are preserved. The extremely negative provisions in
the House bill have been eliminated, and parents' rights remain largely intact. The final
bill does contain a few changes that are weaker or that can be interpreted to be weaker
than current law. Thus it is important that parents and advocates have the best strategies
to deal with these new provisions. Now is the time to disseminate accurate information
about the changes, develop advocacy strategies, and ensure that parents of IDEA students
are trained in the new 2004 provisions.
Here are some examples:
1. Advocates fought against the early resolution meeting now set forth in the bill on the
grounds that parents may feel coerced to go to a meeting after the filing of a complaint
and be intimidated into signing a legally binding document under duress. This concern
is very real. Parents need to know that they can opt out of this meeting if they choose
to go to mediation. Parents must know that they do not have to sign the document in
the meeting, but should take it home to consider.
2. The new manifestation determination does not specify that a manifestation will be
found if the child's disability impairs the child's ability to understand or control the
behavior or if the IEP has not been appropriately implemented. Under the new
language, a manifestation will be found any time the conduct was caused by OR had a
direct and substantial relationship to the child's disability or the failure to implement
the IEP. We should be arguing that this standard is at least as strong as current law. If
a child's disability impairs the child's ability to understand or control his behavior, it
necessarily follows that the conduct was substantially related to the disability.
3. The attorney fees provision has gotten a lot of attention. Parents should know that the
reauthorization did no more than incorporate civil rights attorney fees law that has
been established since 1978!
In other words, DON'T GIVE IN TOO EASILY. We can work with the new law! Our
children have not lost their rights.
DREDF will be developing more comprehensive materials on advocacy strategies.
TO JOIN THE RRN: Visit www.dredf.org and complete our online subscription form.
Earlier Briefings can also be found on our website: www.dredf.org. We now have over
4000 subscribers.
The RRN will continue to appear as the rest of the IDEA regulation process unfolds, and
DREDF will maintain this electronic communication list as a mechanism for contacting
parents whenever legal or legislative issues emerge that concern special education and
children with disabilities.
IDEA Rapid Response Network (RRN)
News Briefing #37 November 21, 2004
Disabled Thais Call for End to Discrimination
BANGKOK, Feb 15 (TNA) Disabled people lit candles outside the parliament Sunday
evening to call on political parties to push through with legislation to end discrimination.
Led by Mr. Monthian Buntan, President of the Thailand Association of the Blind, around
50 people with a range of disabilities stood outside the parliament building in a bid to
ensure that all political parties treated the disabled with fairness and respect.
An eight-point petition for the parties included a call to accelerate the passage through
Parliament of the Discrimination Elimination Bill and a plea to promote equality.
The group also called for at least one percent of the national budget to be given over to
disabled people, noting that at present the percentage was only 0.3.
At the same time, the group demanded consideration for the disabled in the construction
of public transport facilities, as well as an overhaul of Government Lottery legislation in
order that more proceeds went to disabled provisions.
Governance & Legislation Briefly
Compiled by Jennifer Geagan (jennifer@wid.org), World Institute on Disability
Disability Policy Website Launched in Canada
The E-Democracy theme of the Dis-IT Research Alliance, in collaboration with many of
Canada's national disability advocacy organizations, is launching a website called
Disability-Related Policy in Canada on February 1, 2005. Visit the site at
http://www.disabilitypolicy.ca. If you have any comments or suggestions, please contact
Lindsey Troschuk.
National Council on Disability seeks legislation to restore 'original intent' of the
Americans with Disabilities Act
An independent federal agency wants President Bush to propose changes in the nation's
landmark disability act, citing Supreme Court decisions it says have reduced the status of
disabled people "to that of second-class citizens." The National Council on Disability,
which advises Congress and the president, said in a report to be released tomorrow that
legislation is needed to restore the original intent of the 1990 Americans with Disabilities
Act. The council proposed an ADA Restoration Act, which it likened to the Civil Rights
Restoration Act of 1987, passed by Congress to broaden the civil rights law enacted two
decades earlier. Read the AP report online.
Towards a National Policy for Indians with Disabilities
Union Minister for Social Justice and Empowerment Meira Kumar today said the
government would soon bring out a national policy for the disabled to look into their
needs and grievances. Speaking at a function of the National Commission for Women to
mark the "International Day of Disable Persons," the Minister invited input from the
NCW to help formulate the policy. Read the article online.
NOD Survey Shows People with Disabilities Gave Unprecedented Support to
President Bush
A National Organization on Disability survey found a dramatic shift in support toward a
Republican presidential candidate, a clear majority of voters with disabilities choosing
George W. Bush over Sen. John Kerry in the US national election. According to a survey
conducted by telephone between October 29 and November 1, 2004 by Harris
Interactive®, likely voters with disabilities preferred President George W. Bush over
Senator John Kerry by 52.5 percent to 46 percent. One percent of likely voters with
disabilities preferred Ralph Nader. For details, visit
http://www.nod.org/content.cfm?id=1585 .
Living Independently in Los Angeles (LILA) Conducts Voter Preference Survey
After the recent national election, many in our community have said that the disability
vote either "determined the outcome" of the contest for President, or that "we failed to get
our message out." We have decided to take that discourse one step further and try to
understand how significant disability issues really were to the choices made by members
of our community when they cast their votes for the next President of the United States.
We are looking for honest answers, whether politically "correct" or not. If you didn't
vote, please let us know that too and, briefly, why not. ALL SURVEY RESPONSES
ARE PRIVATE AND ANONYMOUS. To get as wide a response as possible, we would
really appreciate it if you would share this survey with anyone you know who either has a
disability him/herself, has family members or close friends with disabilities, or who
works closely with our community. LILA will publish the results of the survey early next
year. Take the survey online.
In ATMs, Not Votes, We Trust
When the ATM asks whether I want a receipt, I usually say no. When a Web site wants
my credit card number, I usually say yes. When I pay bills online, there is no paper
record of the transaction. In my failure to demand physical evidence when money
changes hands, I am not very unusual. Most Americans now conduct at least some of
their financial transactions without paper, or at least sleep happily knowing that others
do. Yet when it comes to voting -- a far simpler and more straightforward activity than
electronic bank transfers -- we suddenly become positively 19th century in our need for a
physical record. Read Anne Applebaum's piece in the Washington Post.
One Vote Could Change Montana House Leadership
The provisional vote of a mentally handicapped elector who works at a sheltered
workshop in Ronan could change the results of Tuesday's House District 12 race, where
Constitution Party candidate Rick Jore now leads Democrat Jeanne Windham by a mere
one vote. The leadership of the House of Representatives hangs in the balance. If
Windham ultimately wins, the House would be split 50-50 between Democrats and
Republicans, allowing the newly elected Democratic governor to name the House
speaker. If Jore hangs on to his win, the House leadership will remain Republican. ...The
competency of the mentally handicapped elector was challenged by an election judge
when the man went to vote. He was unable to sign the registration card legibly himself,
so a sheltered workshop case manager did so for him. Read the entire article from the
Missoulian.
First disabled person included in Namibian political party's parliamentary list
The National Federation of People with Disabilities' secretary general, Gerson
Mutendere, recently resigned from the position he has held since 2000, following his
nomination on the Congress of Democrats' parliamentary list and presented to court and
the Electoral Commission of Namibia. Mutendere is the 11th on the Congress of
Democrats' list of 72 aspirants to the National Assembly and the first disabled person to
be included in a political party list. To read an article online, please visit
http://allafrica.com/stories/200410200195.html.
Namibia Provides Special Ballot for Visually Impaired
The Electoral Commission of Namibia is providing Braille ballot papers to enable blind
Namibians to cast their votes for the first time without any assistance from poll officials
in the upcoming parliamentary and presidential elections planned for November. Until
now, blind voters had to depend on their relatives or close friends to assist them to cast
their votes. With the compilation of special ballot papers in Braille, visually impaired
Namibians can exercise their democratic right to vote in secrecy. The Electoral Act of
1992, Act No. 24 states that every individual Namibian has the right to cast their votes in
secret. Those who cannot read Braille may still bring along a friend or a relative to assist
them in casting their votes. To read an article online, please visit
http://allafrica.com/stories/200410190196.html.
AAPD leads drive to register disabled voters in the US
Throughout the U.S., organizations are registering new voters, arranging candidates'
forums and working to make polling places accessible. Approximately 20 percent of the
US population is disabled, and Washington-based American Association of People with
Disabilities is coordinating an effort to increase Election Day turnout by 1 million new
disabled voters. Disabled citizens are15 percent less likely to vote, according to a 1999
Bureau of Economic Research study, and 14 years after the Americans with Disabilities
Act, many polling places and ballots remain inaccessible. Many visually impaired voters
have never been able to vote in secret. Mobility impaired voters face flights of steps and
inaccessible voting booths. In a 2001, a Government Accountability Office survey of
more than 500 U.S. polling places during the 2000 general election found only 16 percent
were completely accessible. Read the Chicago Tribune article online.
Armenian NGOs and Election Administrators Discuss Improving Elections Access
for Disabled Citizens
IFES-Armenia and Armenian NGOs, Lusastgh and Paros, convened a round table
discussion to improve access for disabled voters to the country's electoral processes and
further develop the recommendations regarding the Electoral Code and other legal
procedures with representatives from the Armenian National Assembly, the Central
Electoral Commission, territorial electoral commissions, local government officials, and
international and local NGOs. Armenia's current electoral code guarantees equal electoral
rights of all citizens who have the right to vote, including citizens with disabilities, and
the officials agreed to address the needs of disabled voters in legislative changes. To read
more, please visit http://www.ifes.am/news/july%2004/story1.html.
New Philippine Governor Upsets Dynasty
Grace Padaca, a 40-year old woman who uses crutches as a result of childhood polio, was
elected governor of Isabela province in May, upsetting Gov. Faustino Dy Jr., the third
successive member of the powerful Dy family to run the province over the last 35 years.
Padaca, who had championed the causes of the poor for 14 years as a local radio
commentator, campaigned day and night in poor villages throughout Isabela with a few
volunteers. The power of the Dy family made many supporters afraid to be seen with her
in public, fearing they could lose their jobs, and the Catholic Church deployed about
3,000 parishioners to help guard the ballot boxes, fearing widespread vote fraud by the
Dys. Read the Washington Post article about Padaca online.
Play the ADA Game
The ADA Game simulates how advocacy can promote positive changes in communities.
Players take on the role of advocates for disability rights in one of eight virtual
communities and work together to improve compliance with the Americans with
Disabilities Act (ADA) in program access, public accommodations, transportation,
employment, and communication. The ADA Game is free and available for anyone to
play at any time online and can serve as a training and advocacy tool for anyone
interested in disability policy, personal advocacy, or community leadership. Play the
ADA Game at http://www.adagame.org.
The US Department of Justice releases polling accessibility guide
Earlier this year, the US Department of Justice released "The ADA Checklist for Polling
Places" to ensure that all polling locations in the US are in compliance with the
Americans with Disabilities Act. The ADA requires state and local governments to
ensure that people with disabilities have a equal opportunity to cast their ballots on
election day, and this online guide is designed to assist local election officials in
understanding and implementing these requirements before the upcoming election in
November. The guide covers a variety of access issues including parking and passenger
drop-off, walkways, corridors and building entrances, as well as the voting space and
assists officials in assessing and solving problems that may occur simply and efficiently
at the wide range of facilities used as polling places throughout the country. The guide is
available online at http://www.ada.gov/votingck.htm.
Supreme Court decides on free education for disabled people in Nepal
The Nepalese Supreme Court recently ordered the government to provide free education
to all disabled people throughout the country. The Supreme Court also directed the
Ministry of Education and Sports, The Education Department, The Higher Education
Department, The Special Education Council, The Tribhuwan University, The Purbanchal
University and the Kathmandu University to Provide Free education for disabled people.
The Nepal Disabled Human Rights Center, which has been lobbying for access to free
education for disabled people, will continue to keep up the pressure on the government
and the various agencies, on NGOs, INGOs, UN Agencies, Human Rights Organizations,
and the general public to ensure the full implementation of this landmark Supreme Court
decision. (From the Disability Tribune, a publication of Disability Awareness in Action,
December 2003/January 2004).
Disabled people appointed to Bangladesh Government
Disabled people in Bangladesh welcomed the appointment of four disabled men to the
Social Services Directorate. Persons with disabilities in Bangladesh are hopeful that this
milestone event will send a clear message that disabled people are valuable members of
their communities and that they have the right to contribute to policy development and
the decision making process. (From the Disability Tribune, a publication of Disability
Awareness in Action, December 2003/January 2004).
New Disability Rights Manifesto in Northern Ireland
1 in 5 people in Northern Ireland are disabled. Disability Action, the local DPO,
produced The Northern Ireland Manifesto and hopes that it will work towards
challenging the disadvantage and discrimination faced by disabled people in that region.
The Manifesto covers all the key areas including the right of disabled people to be
recognized as human beings, the right to education, the right to employment, housing and
information. Disability Action wants the Manifesto to be used by individuals and
organizations to lobby government departments, political parties and all public
representatives. To obtain a copy of the Manifesto, e-mail Disability Action at
hq@disabilityaction.org . (From the Disability Tribune , a publication of Disability
Awareness in Action, December 2003/January 2004.
Disabled voters in Wales launch campaign to improve voter access
The BBC reported in April that the Wales Disability Reference Group has launched a
campaign to improve access to voting stations for Wales' 400,000 disabled voters. A
2003 survey revealed that 77% of polling booths were inaccessible to some, and the
group said with some planning these obstacles could be avoided. Representatives from
the group met members of all the main political parties. One of the points raised was for
politicians to ensure that all the forms for voting are available in alternative formats such
as Braille. The Wales Disability Reference Group believes that it is in the parties' own
interest to maximize potential voters' chances of casting their ballot in the June local and
European elections. Read the entire BBC article online.
Arts & Media
Disability Portrayals Dominate Academy Awards Again
By Barbara Duncan (bjdnycla@aol.com)
Three of the five films nominated on January 25 for best picture of 2004 have main
characters with a disability: "Ray" is a biography of the world famous blind musician,
Ray Charles; "Aviator" is centered on the life and times of Howard Hughes, an air travel
magnate and Hollywood figure who becomes progressively isolated due to mental illness;
and "Million Dollar Baby" is a fictional story about a woman boxer who becomes a
quadriplegic and asks her trainer to euthanize her.
Three films nominated in other categories are also explicit disability portrayals: the
nominee from Spain in the foreign language category, "The Sea Inside," is a biographical
treatment of a seriously disabled man who campaigns for the right to kill himself; "A
Very Long Engagement," a French film nominated for best cinematography, features a
character physically impaired by polio who searches long and far for her missing lover in
Post World War I France; and a nominee in the best short subject category is "Autism is a
World," written by 26 year old Sue Rubin, who has autism, and co-produced by Syracuse
disability studies professor Doug Biklen and former Academy Award winner for
documentary ("Educating Peter") Gerardine Wurzburg.
Controversy about "Million Dollar Baby"
Following the announcement of the 2004 Academy Award nominees for best films and
performances, U.S. media critics on both coasts immediately weighed in on the
sociological implications of which films were selected and which were excluded. On
January 25 Washington Post media critic Desson Thompson commented in an online
discussion about the nominees that "Voters of the Academy are easily swayed by the
obvious and the 'over the top', not to mention anyone in a wheelchair."
R. Shaw of www.BeyondChron.org (an online periodical for those who don't feel
represented by the San Francisco Chronicle), wrote on January 26 that, " ...Million Dollar
Baby is less about boxing than it is about killing disabled people. And the film's message
cannot be separated from the public anti-disability rights perspective of its director and
lead actor, Clint Eastwood." In this issue of DisabilityWorld, we have also included a
separate story about the disability press reviews of Million Dollar Baby and A Sea Inside
as "disability snuff films."
February 27: the Oscars
On February 27, the Oscars will be announced before a worldwide television audience.
Having seen all five contenders for best picture, I am rooting for "Ray," as it is a
provocative film about a musical genius that manages to seamlessly integrate how his
blindness affected his business acumen, civil rights participation, vulnerability to drug
use and his life in general. In my opinion, "Million Dollar Baby" is an extremely
powerful film until the lead character becomes disabled - at that moment, the lights
almost literally go out: the script disintegrates into speeches and messages, the characters
are reduced to one dimension, and the cinematography obscures, darkens and blurs.
"Aviator" poses some interesting questions, more about Hollywood during WWII and the
post War period than about Howard Hughes, but I feel it goes too glibly in too many
directions to be considered best picture caliber.
Human Rights Watch International Film Festival
The Human Rights Watch International Film Festival returns to London for the ninth year
and this year the festival is screening three films featuring disability. Many of the
filmmakers will attend the screenings and are available for interview during their stay
here.
Midwinter's Night Dream (London Premiere) plus filmmaker talk
• Serbia & Montenegro
• Sunday 20 March, Gate Cinema, 18.45 & Tuesday 22 March, Ritzy Cinema 21.00
• Set in the winter of 2004, Lazar, a Serbian Army deserter sent to prison for many
years, returns to his former home in hopes of returning to his former, normal life.
There he finds squatters -Jasna, a single mother who is raising her autistic 12-year-old
daughter Jovana (stunningly played by Jovana Mitic who is severely autistic).
Refugees from Bosnia, they have been squatting in Lazar's apartment for some time
now. Like Lazar, Jasna, whose husband never accepted their daughter's autism and
abandoned them, also wishes to turn the page on a difficult past. Lazar doesn't have
the heart to make them leave. Little by little, among these three beings marginalized
by society, a special kinship develops.
• Dir Goran Paskaljevic (Serbia and Montenegro 2004, 95 mins, drama)
• Serbo-Croatian with English subtitles
Living Rights: Yoshi, Toti And Lena
•
•
•
Japan/Kenya/Belarus
Sunday 20 March, Ritzy Cinema, 14.00 & Tuesday 22 March, Ritzy Cinema, 18.45
A powerful, striking film exploring dilemmas facing three young people on three
different continents, including the 16 year old Yoshinori who has Asperger's
Syndrome - a form of autism exposed in Mark Haddon's extraordinary novel The
Curious Incident of the Dog In The Night-Time. Yoshi's dream is to attend a regular
Japanese high school. With humour, wit and creativity Yoshi makes a strong case for
us all to believe he should.
• Dir Duco Tellegen (Japan/Kenya/Belarus 2004, 83 min, documentary)
• Japanese, Maasai & Russian with English subtitles
Pulled from the Rubble (Closing Film) plus filmmaker talk
• Wednesday 23 March, ICA Cinema, 20.45 & Thursday 24 March, Ritzy Cinema,
21.00
• In August 2003, Gil Loescher went to Baghdad on a humanitarian research trip. He
and his colleagues were in a meeting with the head of the United Nations in Iraq,
Sergio Vieira de Mello, when a truck full of explosives was driven into the side of the
building. Gil was the only survivor from the most devastated section of the building,
needing his legs to be amputated to escape from the rubble. All the other people in the
meeting died. Through poignantly honest narration, and observational scenes of high
emotion, his daughter records the family's recovery during the months after the
bombing. Using the camera becomes her way of dealing with the suddenness of the
family's changed reality, and a way of re-visiting the haunting images of the bomb site
- a place of both horror and hope.
• Dir Margaret Loescher (UK 2001, 63min, documentary) In English
For further press information or images contact: Sarah Harvey or Angie Davis,
SarahHarveyPublicity on 020 7703 2253 / 07958 597426 / press@sarahharvey.info
THE RITZY GATE CINEMA ICA Box office 0870 7550 062 0870 7550 063 0207 930
3647 www.picturehouses.co.uk www.ica.org.uk
Supported by the National Lottery through the UK Film Council and Film London
Regional Investment Fund for England
UK Disabled Actor Rivets Off-Off-Broadway Audience
By Barbara Duncan (bjdnycla@aol.com)
QuickTime™ and a
TIFF (Uncompressed) decompressor
are needed to see this picture.
Actor Mat Fraser, one of
the UK's most prominent
'thalidomide babies,' is
starring this February in
"The Flid Show," an offoff-Broadway production
about the impact of the
drug which caused
physical disabilities in an
estimated 10,000 babies
throughout Europe and
Canada. "Flid" is a British
playground taunt based on
"flippers" and
thalidomide, and the play
title appears to reflect the
caustic humor of the main
character, Duncan
Mowbray, and his
ambivalence about his
disability identity.
Written by American
playwright Richard
Willett, the drama
provides a historical
reckoning with all who
played a part in the drama
surrounding this drug: the drug companies that did insufficient testing and fought its
withdrawal from the market in Germany, the UK and other European countries; Duncan's
mother, representing the tens of thousands of pregnant women who innocently took the
drug in the late 1950s and early 1960s to avert nausea or sleeplessness; and the
governments whose business-friendly regulations made it difficult to inform the public
about the newly-discovered side-effects.
Willett has done copious research into both the medical and popular literature
surrounding the drug, making possible fascinating vignettes such as Dr. Frances Kelsey,
the young, female pharmacologist of the U.S. Food and Drug Administration, who singlehandedly blocked thalidomide from the American market; the well-publicized trials of a
Belgian mother who killed her infant daughter who was born without limbs; and the
media circus that followed an American television actress who took the tablets just after
their effects became known and flew to Sweden for a legal abortion.
The script is balanced between scenes of Duncan's present life as a mildly successful
lounge singer surrounded by strong women - his sister and his girlfriend - who both
demand an emotional maturity he is not quite ready to take on, and forays into the past,
populated by ghosts - his late mother, an unhappy artist who committed suicide, his father
who left the family, and schoolyard bullies. At times the play is weighted down by all the
burdens of the past and expositions of scientific data, but is then suddenly leavened by
the raw sexuality and quirkiness of the contemporary scenes - in his nightclub act Duncan
only sings songs that were hits in 1962, the year of his birth.
Fraser is a potent actor; in fact the New York Times reviewer, Charles Isherwood, calls
him "charismatic" (February 1, 2005), and the uneven play demands such a force to keep
it aloft. Fraser's deft delivery of both the dialogue and easy-listening rock in resonant
voice, coupled with his muscular interpretation of the character, kept the audience
riveted. The ensemble of supporting characters are also strong, illuminating many aspects
of the story that the playwright refuses to cast in the simple black and white judgments of
hindsight. "The Flid Show," will continue throughout February at the tiny (barely
accessible--the elevator works but it's narrow, and the restroom is up 2 steps) Medicine
Show Theatre, on a third floor, way west of the theater district. If you miss Mat Fraser in
this New York show, you can catch him in March in Auckland where he will present his
one-man show as part of Giant Leap, New Zealand's international disability arts festival,
taking place in Auckland, February 26- March 6: www.giantleap.org
Award for Film About Human Rights of Disabled
Paraguayans
Washington, DC. - "Picture this" - Canada’s international disability film festival, has
named Alison A. Hillman, Director of Mental Disability Rights International’s (MDRI)
Americas Advocacy Initiative, as a 2005 winner in their documentary film category.
Hillman won the award for film shot in a psychiatric hospital in Paraguay, where MDRI
investigators found egregious human rights violations perpetrated against patients,
including two boys who had been kept naked in isolation cells for over four years.
Using this video as evidence to supplement their petition to the Inter-American
Commission on Human Rights (IACHR), MDRI and the Center for Justice in
International Law (CEJIL) obtained an historic ruling to protect 460 people in Paraguay’s
psychiatric facility. In addition to immediate life-saving medical treatment and protection
from sexual abuse, the Commission ordered Paraguay to end the barbaric practice of
long-term isolation.
Hillman, an attorney and lead investigator in Paraguay, shot the film to illustrate the
inhuman and degrading conditions and long-term segregation suffered by those
institutionalized. Hillman edited the video together with a volunteer editor arranged by
WITNESS, an organization that specializes in helping human rights groups use the media
to further their advocacy efforts.
The juried film festival centers exclusively on work done by people with disabilities or on
the topic of disability. Hillman describes the film as, "A haunting documentary of
conditions inside Paraguay’s Neuro-Psychiatric Hospital. The video enumerates
international human rights norms for the protection of persons with mental disabilities
and illustrates vividly how conditions and treatment in the hospital violates fundamental
human rights principles." Film festival jurors claim the film is "in your face - real," "an
uncompromising look at injustice," "powerful, gripping & painful," "very political,
informative and educational," "extremely effective," "photography speaks for itself,"
"very disturbing but important to see," and "very hard to watch . . . got the point across
clearly & dramatically."
MDRI is an international human rights organization dedicated to the recognition and
enforcement of the rights of people with mental disabilities worldwide. MDRI needs your
support! Click [here] to contribute to MDRI using our secure server.
The "Picture this" film festival and award ceremony will be held February 14-18, 2005 at
the University of Calgary in Alberta Canada.
Ragged Edge E-Letter Critiques New Films Supporting
Euthanasia
These Movies Are Just Killing Us...
Million Dollar Baby has just brought Clint Eastwood a Golden Globe for Best Director.
The Sea Inside has brought Alejandro Amenábar a Golden Globe for best foreignlanguage film. What links both movies? The message that it's the kind thing to do to kill
someone who's become a quadriplegic. "A corny, melodramatic assault," says Not Dead
Yet's Steve Drake in his review of Eastwood's latest.
The Sea Inside opens with the sound of quadriplegic Ramon Sampedro breathing. Jessica
Yu's 1996 Academy Award winning Breathing Lessons started the same way. Yu's film
celebrated disability, says Art Blaser, while The Sea Inside is "a seductive but socially
irresponsible film of what can only be called disability defamation."
Disability groups are starting to raise a stink about these movies. Not Dead Yet activists
are picketing and distributing protest leaflets at this evening's Chicago Film Critics
Association awards gala at the Union League Club of Chicago (info at
http://www.notdeadyet.org/docs/bigotpr.html) The National Spinal Cord Injury
Association has just issued a news release calling Baby "a brilliantly executed attack on
people with spinal cord injury." Check PR Newswire at http://biz.yahoo.com/prnews/ to
read the release. Steve Drake offers suggestions as to what you can do to protest the
movie, too.
Ragged Edge editor Mary Johnson wonders about the appearance of two crip snuff films
at the end of 2004, propping up what is likely the most contentious public issue since
abortion.
UK TV Networks Launch New Initiative for Disabled
Actors
The BBC, Channel 4 and the actors centres are launching a new talent training fund for
existing and aspiring disabled actors who want to work in television.
Why are we launching this initiative?
16% of the adult population in the UK are Disabled People, but they make up less than
1% of representation on television. Research shows audiences are overwhelmingly in
favour of seeing more disabled people on television.
BBC
Ewan Marshall, BBC producer of Pear Shaped and Every Time You Look At Me which
had disabled actors in lead roles knows "there is a whole untapped pool of talent and new
stories out there. I think the talent fund is a great opportunity to find and develop that
talent".
Paul Henshall is facing the campaign. Paul, who has cerebral palsy appeared in A Thing
called Love and will be appearing in Holby City as a regular later this year. Emma
Turner, BBC Series Producer, Holby City says "Paul Henshall is a wonderful actor who
will bring a new young, ambitious character into Holby City. The BBC aims to make
Holby City truly representative of its audience and Paul is an essential ingredient of that."
Channel 4
Following the success of the Channel 4/Actors Centre Bursary Scheme for Disabled
Actors in 2003/04, Channel 4 is delighted to be partnering the BBC and the actors
centres in this new Talent Fund. It will enable many more disabled actors to develop
skills and strategies that will improve their chances in the highly competitive world of TV
drama casting.
Channel 4's Editorial Manager for Disability Alison Walsh says: "In 2005 I am
overseeing a number of new initiatives to increase the number of disabled people on and
off screen. Channel 4 is determined to reflect disabled people's participation in society
more fully. Disabled actors continue to find it difficult to break into the industry, and the
Talent Fund will allow some of this untapped talent to develop."
About the actors centres
The actors centres in London, Manchester and Newcastle upon Tyne exist to provide
professional actors with further training of the highest quality and the opportunity to
develop every aspect of their craft. They promote high artistic standards across the
profession and initiate innovative work and projects. They also provide opportunities for
actors to share information, exchange ideas and develop their careers in a supportive
environment.
In 2003-4 the Actors Centre ran a very successful Channel 4 Bursary Scheme for disabled
actors, one of whose recipients was Paul Henshall. The actors centres are delighted that
this new partnership with the BBC will extend the scheme to the Northern Actors Centre
and Actors Centre North East and help more disabled actors to gain access to the finest
professional training.
Website Shows Videos of People with Disabilities
The United People With Disabilities web site shows videos dealing with disability
subjects and situations. We would like to show your product or service to our viewers.
Our web site is currently receiving, on average, 38 first time visitors per day.
Anyone that can access the Internet can watch these programs from their home or
location at any time and free of charge. We add new programs on a regular basis and are
always looking for new videos to show.
Do you have a video that we can show? If you don't already have a video, we will edit
one that you shoot. You don't have to be an expert to shoot your own video. We will give
you how-to tips. It is very easy! Your contact information will be included so our viewers
can contact you / visit your web site.
We are looking for videos that show a company's product or service. We are looking for
videos that show the accomplishments of people with disabilities. We are looking for any
videos dealing with disability subjects or situations. A yearly membership is required to
participate.
Some of our current programs are...
Jeff Charlesbois: "Sit Down Comic"
Pacer: A parent training / information center for families of children and youths with all
disabilities.
Cheryl Marie Wade: Poetry reading.
Freedom's Wings: An organization that offers people with disabilities a free ride in a
glider.
In A Little Boat: Exciting footage about how easy sailing is for people with disabilities.
See someone with severe Cerebral Palsy easily sail alone. Includes description on how
the boat was designed.
Northeast Passage: Action shots of people with disabilities participating in sports and
recreation.
Achilles Track Club: How important is exercise after Traumatic Brain Injury?
Tim Baley: This is a remarkable story. Tim is a concert pianist who was born with
Cerebral Palsy and slight mental retardation. Tim performs for, and does, a duet with
Liberace.
Plus more.
Stop by and watch some of our programs.
Just go to... http://upwd.net and click on UPWD TELEVISION.
Arts & Media Briefly
Cambodian Media Executives Discuss Media Coverage of HIV/AIDS
Media editors and managers from about 50 of Cambodia's
leading print, radio and TV outlets met at an executive dinner in Phnom Penh on January
31 for an unprecedented dialogue on responsible media coverage of HIV/AIDS. Full
Story: http://www.internews.org/news/2005/20050204_cambodia.html.
Latest issue of Opening Stages now available
Opening Stages is a quarterly newsletter, produced by the John F. Kennedy Center for
the Performing Arts, for people with disabilities pursuing careers in the performing arts.
Issue #13 (December 2004-February 2005) includes the editor's "Reflections on
Professionalism," the articles, "Professionalism in Performance" and "Beethoven's
Nightmare," along with other news and information on programs and resources for
performing artists with disabilities. Click here to download the latest issue. To subscribe
to the free quarterly Opening Stages newsletter, e-mail your request for a subscription to
Opening Stages along with your name, e-mail address and snail mail address to
access@kennedy-center.org.
The Giant Leap International Disability Arts Festival in New Zealand
February 28 - March 6, 2005, The Auckland Performing Arts Centre TAPAC, Western
Springs, Auckland
Giant Leap is New Zealand's first International Disability Arts Festival. It will feature the
best, professional disabled talent from New Zealand alongside top overseas performers in
a feast of events, from deaf theatre and mixed ability dance to storytelling, comedy and
music. For something quite different in the arts, explore the diversity that Giant Leap
offers.
An exciting focus will be on Deaf and Visual Theatre, with Ramesh Meyyappan from
Singapore conducting a series of Master classes. He will also perform a solo show This
Side Up, a lighthearted comedy about a country "innocent" arriving in the city. Ramesh
Meyyappan graduated from the Liverpool Institute for Performing Arts with a first class
BA (Hons). A multi-faceted and deaf practitioner Ramesh has worked with a number of
theatre companies including Spike Theatre and Hope St in Liverpool and Mime
Unlimited and Dramaplus Arts in Singapore as a director, performer and teacher /
workshop leader. Before taking up his degree at LIPA, he was Artistic Director of Hi!
Theatre, Singapore's only deaf theatre. A directorial highlight included a physical
adaptation of Shakespeare's Macbeth.
American David Roche is another of the overseas performers. Equal parts storyteller and
stand-up comic, he has garnered rave reviews in Canada, the U.S. and Australia. The
Church of 80% Sincerity is a hilarious and groundbreaking evening of inspirational
theatre based on David's life experiences. "As a person with facial difference, I am a oneman show, both offstage and on," says David. "I use humor as a shamanic tool to dissolve
fears and open windows, reframing disfigurement and disability."
Actor, poet, musician, writer and 'thalidomide ninja', Mat Fraser lists an impressive array
of performance skills that anybody would be proud of. But Mat doesn't have just any
body; he is phocomelic, born with shortened, "seal-like" arms. Flying in from London,
England, Mat will perform his one-man spectacular Sealboy:Freak.
And Canadian Bi-Polar Princess Victoria Maxwell is yet-to-be-confirmed to present
Crazy for Life, her brave, funny, and compelling look at experiencing, surviving, and
coming to terms with mental illness.
Turning Mobility is a multi-genre Auckland based ensemble who will present a
performance and curate the visual art exhibition. This will feature a broad range of artists
and media.
The Closing Concert (Saturday 5 March) will feature a colorful spectrum of the
performers at the festival as well as local musicians Caitlin Smith and Kylee Maloney
alongside Billy T award-winning comedian Philip Patston and Touch Compass,
renowned New Zealand mixed ability dance company.
Inspired - Informed - Involved will give you a chance to meet the international and local
artists and performers involved in Giant Leap. The Global and Local Disability Arts and
Culture development seminar will feature presentations and discussions about issues
affecting disabled artists and performers worldwide.
The week of excellence in disability arts will end on Sunday, March 6, with the Final
Jam, a participatory event where professionals and amateurs of all ages combine in the
spirit of collaboration, mentorship and entertainment.
For more information, visit http://www.giantleap.org.nz/.
Women
Pakistan Society for Disabled Women, Newsletter for
2004
Reported by Ms. Shumiala Asif, Program Officer, SDW Pakistan (sdw08@yahoo.com)
January 2004
SDW monthly meeting held in the first week of Jan 2004. The whole year progress was
discussed and new targets were set. In the meeting the letters of committees of different
rural areas women were reviewed in which they had mentioned that many disabled
women do not get chance to go around the country to visit different places. We would
like to have some exposure through picnic tours and also by celebrating women day and
international events concerned with women.
SDW is already arranging awareness activities for disabled women in the far rural areas,
but we will try our level best to organize international events especially for disabled
women who are living in far villages. Also we will write to organizations across the
country to invite our disabled women for training women and exposure seminars.
It is notable that SDW started another office in district Toba of SDW has been running
since December 2003. There are three staff members one paid and two volunteers'
women working for Disabled women in the remote areas. We are thankful to Human
Development Center Toba Tek Singh for providing us place for office.
Ms. Shumiala Asif program officer (SDW) visited SDW Toba office and organized
training program for staff members.
The sewing machines have been distributed to 13 skilled disabled girls and women with
help of local donations.
February 2004
Society for Disabled Women focuses on the recognition of Disabled women in the male
dominant society, and for this purpose SDW plans to organized different awareness
activities for women at community level. SDW encourage bringing out the hidden talent
of Disabled Women.
SDW district Toba office is striving for to motivate disabled women from far villages to
become members. The literacy rate in the rural areas is very low and Disabled women
community is completely unaware of and also these women are also discouraged to take
part in social activities.
The SDW team in Toba district organized awareness meetings for Disabled women in the
local villages.
The field workers of SDW Faisalabad district organized group meetings with disabled
women members and planned to celebrate women day on 8th of March.
March 2004
The disabled women are the most neglected part of the male dominant society. SDW is
making sincere efforts to give them recognition at community level. SDW aims to
introduce disabled women as skilled, professional person in the practical fields.
The disabled women groups were all gathered in SDW Faisalabad office for women day
celebration on 8th of March.
The awareness seminar was organized on skill development. The disabled women
members of SDW attended program and were given awareness about the skills they can
learn according to their living environment of surroundings.
SDW Toba organized a group of 15 disabled women and girls after three months struggle
and motivation. The meeting was organized and Ms. Fakhra Ashraf Coordinator women
desk (HDC) gave talk to new members about women development issues.
April 2004
There is very common issue here in the remote areas, that women are victims of honor
killing and in sexual harassment cases. Hundreds of disabled women are victim of honor
killings, sexual harassment and abduction cases, who do not get attention of the media
and no body, pursue their cases.
SDW collected some of the case studies of disabled women who have been raped. These
disabled women are afraid of sharing the incident. It seems that some body has threatened
them. They were not agreeing to become member of SDW. We are stilling working on
and SDW aim to start awareness program with these victims of sexual harassment.
SDW learnt from a survey report, almost disabled women are found unmarried in the
rural and urban areas. The report mentioned two reasons:- one is that parents or guardians
of disabled women and girls do not encourage them to learn some skills or just consider
them useless part of the society and family. If they are skilled or educated may be they
have chance to get marry. The other reason was given that people show sympathetic
attitude for disabled female. They think disabled wife won't be able to look after the
house and children.
SDW aims to empower disabled women to look after herself and her needs.
May 2004
The interfaith activities of SDW help to promote peace and harmony among the
individual disabled women members.
SDW is working for the uplift and recognition of disabled women. SDW organized
awareness seminar and invited community organizations representatives from the local
community development organizations. The purpose of the meeting was to reflect women
status in male dominant society.
A disabled member Perveen Saleem (dumb) from Toba Tek Singh is good at making
handicrafts, she made some very unique designs and SDW Faisalabad office has taken
responsibility to market the skill to get some business for her, so that she may be able to
support herself.
A disabled women Sumera (polio affected legs) from SDW Faisalabad attended two days
workshop on skill development organized by Women Working for Women.
June 2004
SDW believe that disabled women can only make herself important member of the
society if she is able to earn her own livings.
SDW members running sewing center for disabled women members, and some women
already have sewing skills and staying free at home. SDW organized meeting and invited
sewing experts to guide these disabled girls and women. The topic was " how to utilize
their potential and skill".
The field workers marketing the products stitched by disabled women to get business to
earn livings. SDW planned to promote their sewing skills in the market.
Political awareness seminar organized for the disabled women members with the
coordination of district government officials. It was concluded, there are hundreds of
disabled women and girls with out national identity cards and vote registration.
July 2004
SDW support human rights of women at all levels of society. SDW is against all types of
discriminations and unjust attitudes of the society.
Society for Disabled Women organized awareness meeting for women community
organizations. The 10 members of five organizations participated.
We are thankful to DOM, WWW, Mercy Shelter, SATH, TRC, for participation, also we
are thankful to Mr. Pagaan from HDC for conducting the activity.
Women Working for Women (WWW) organized beauty parlor course for women in the
community, Ms. Shazia from SDW Faisalabad attended training course.
August 2004
There are number of women organizations working on women issues, SDW seek to
extend relationships and promote partnership on women development issues.
Society for Disabled Women got registration under the trust act of government of
Pakistan on 8th of August.
SDW Toba Tek Singh organized seminar on Sexual harassment and honor killing of
disabled women on 18th of August. SDW Faisalabad, HDC Toba office, TRC, SATH,
AWARD NGO Faisalabad, participated.
SDW started one year awareness action plan on sexual harassment against disabled
women in the month of August.
September 2004
The awareness through practical activities is more useful, like performing skits help
disabled illiterate women to understand the problems easily.
SDW already collected some case studies in April 2004 about disabled women sexual
harassment victims, these women were invited for the awareness program. The victims of
rape and abduction cases will be involved in the action plan for Disabled women
awareness program.
Disabled Women of sewing center took part in exhibition organized by textile factory.
Some cloth gifts were awarded to all women participants and who presented their stitched
garment products.
SATH Theater group started working with SDW in Toba Tek Singh to promote
awareness through drama activities.
SDW started motivation plan with disabled women members about awareness and
importance of national identity cards.
October 2004
The disabled women community suffers due to inhumane attitude and behavior of male
dominant society.
Ms. Catharine Coordinator SDW Toba office organized a meeting for more than 45
disabled women members from rural areas. The women were gathered in a group first
time. It was tough target to bring them at one place. She started collecting them early
morning to bring them at program venue. We are thankful to HDC for providing van for
pick and drop of disabled women.
SDW Faisalabad visited a government school of special education in the city area. We
met principal and children and presented some gifts to these poor and needy disabled
children.
SDW invited some of the media people from local newspaper and district government
officials to brief them about awareness action plan of sexual harassment against disabled
women.
November 2004
A motivation through mutual understanding makes the task easy to perform.
Planning for coming up International Disabled Day on 3rd December, SDW organized
combined staff meeting for both offices to plan out the activity on 3rd of December for
international disabled day.
SDW Toba office arranged Aftar party for all disabled women members in the holy
month of Ramzan.
SDW team workers started campaign in November for having joint venture for all the
disabled women groups on International Disabled Day. It was decided to leave all other
activities and just to concentrate on motivating disabled women to come for the
celebration of International Disabled Day.
December 2004
International, local cultural events celebrations bring solidarity and prosperity among
individuals and groups of communities.
International Disabled Day was celebrated on 3rd of December 2004, more than 250
disabled women and girls from Faisalabad and Toba districts participated in the program.
The disabled women and girls were told about the importance of Disabled Day and gifts
were distributed.
In the monthly board meeting of SDW, it was decided that motivation plan for disabled
women for new national identity cards and vote registration will be continued.
For more information, contact:
Society for Disabled Women
St# 9 Barkat pura
Faisalabad 38090
P.O.Box: 1075
Pakistan
Email: sdw08@yahoo.com
Recent Books Concerning Women with Disabilities
By Barbara Duncan (barbaraduncan@gmail.com)
During 2003-2004, several important books concerning disabled women were featured in
Disability World reviews, including those by Harilyn Rousso on inequity in special
education and publications on the situation of disabled girls and women; the
posthumously published book on health care of disabled women by Dr. Sandra Welner;
My Path Leads to Tibet, an adventurous autobiography by Sabriye Tenberken, a blind
German woman who overcame all the naysayers and pursued her dream to create a
school for blind Tibetan children; and reviews of ILO booklets on the success stories of
disabled women entrepreneurs in Ethiopia.
Below are descriptions of new books received since those reviews were published.
From There To Here: Stories of Adjustment to Spinal Cord Injury, edited by Gary
Karp and Stanley Klein, Ph.D., 269 pages, published 2004 by No Limits
Communications, information: www.newmobility.com
This fast-paced well-edited collection of 45 stories of personal journeys after spinal cord
injury has earned many excellent reviews. Deborah Kaplan, former director of the World
Institute on Disability, stated categorically that she wished she had been given a copy
when she became disabled. "For people who are newly disabled, their friends and
families" Kaplan said, "this is a resource to be treasured. For everyone else, this book
shows how resilient we all are just because we are human."
At least 20 of the stories feature women and their chapters are replete with an equal focus
on their families, husbands and children as on their own rehabilitation and their fights to
rejoin society. Interestingly, in both the chapters by men and women, the stories have
certain similarities: most became disabled through vehicular or sports injuries, most did
their rehab at the better known centers - Kessler, TIRR, Craig, Rancho Los Amigos most are either employed, self-employed or fulltime parents, and unless the editors were
actually co-writers, most have excellent communication skills.
These are very well told stories, with a wealth of practical information and range of
insights, and the book concludes with a well thought out listing of web-based resources
about surviving SCI. My only wish is that some of the stories had illustrated a bit more
diversity: the folks who go through substandard rehab, those who have fewer resources
after injuries from violence, the ones whose families don't speak English well enough to
search out services and connect them with peers, the ones who spend years in nursing
homes because their states don't invest in independent living options. But, that would
have been a different book...
Homebound: Growing Up with a Disability in America by Cass Irvin, 223 pages,
published 2004 by Temple University Press, Philadelphia. Website:
www.temple.edu/tempress
"Powerful, well written and hard to put down," says Dr. Fred Hafferty of the University
of Minnesota; "A very important book," states Rosemarie Garland-Thomson, author of
Extraordinary Bodies: Figuring Physical Disability in American Literature and Culture.
Prof. Garland-Thomson explains why this book is important: "She... lays out the
arguments for seeing disability as a sociopolitical issue, for recognizing the connections
to the civil rights and women's movements..."
Irvin's prose is inviting, as though someone familiar but not exactly known, has drawn
you into her living room, her life and started to tell you stories about how things were in
the 50s, now the 60s and so on, until you are all caught up and almost friends. Irvin is a
quadriplegic due to polio, and has a really good memory. For example, she makes the
famous segregated southern rehab center, Warm Springs, come alive with descriptions of
how life in this institution was actually "liberating" to its disabled "patients" and a chance
meeting with the young Senator John F. Kennedy. The title word "homebound" is
carefully chosen - Cass Irvin literally keeps going home, bound and determined to
implement her definition of independent living and political struggle in her most familiar
surroundings. This is a gem of a book, imparting lessons painlessly and with admirable
honesty.
Working Against Odds: Stories of Disabled Women's Work Lives, by Mary Grimley
Mason, with a foreword by Rosemarie Garland-Thomson, 183 pages, published 2004 by
Northeastern University Press, Boston. Website: www.nupress.neu.edu
The author, a professor of English, had polio as a child and only recently had the time to
explore how other women with disabilities had fared in their lives and, specifically, in
their work. This volume contains the results of 30 interviews with a wide ranging
diversity of disabled women. Mason writes that, "My own attitude and understanding of
disability changed as a result of this project. I tried to ignore my disability and the
disabled community and concentrated on overachieving. When I began to accept my own
body and impairments as a part of who I was, I became aware that I was indeed part of
the disabled community."
The 30 women are, Mason admits, not statistically representative of disabled women in
America, since they are more advantaged: the majority are gainfully employed and have
at least some higher education. Nonetheless, their accounts are fascinating, especially
when they describe the various ways they dealt with marginalization - some confronting,
some trying to assimilate into the non-disabled world, but all eventually talking about
how their claiming disability status and dealing with marginalization affected their work
experience. About success in work experiences, Mason concludes that a number of
factors were significant: a positive family attitude, access to a social system of support,
and an economic status that facilitates educational and other opportunities. Finally, the
quality of education and counseling about career choices and opportunities were critical.
Color of Violence Conference: adding disability to antiviolence actions
Color of Violence III: Stopping the War on Women of Color
Featuring: Revolutionary, Disability Positive, Women-of-Color-Centered Movement
Building!
March 11-13, 2005
Historic Treme Community
New Orleans, LA
Tired of choosing between race, gender, and disability? The Color of Violence III
Conference features several opportunities for women of color with disabilities and our
allies to forge a radical analysis and vision for organizing. This track includes:
• Organizing Against Violence Against Women of Color with Disabilities: Develop
and implement a radical women of color analysis of violence against women of color
with disabilities and its connection to other struggles.
• Integrating a Disability Analysis Into All Radical Women of Color Organizing: A
collective dialogue for women of color with disabilities and our allies.
• A working session on developing organizing strategies among women of color with
disabilities.
Join us! All conference locations are wheelchair accessible. We will have ASL
interpretation.
New Orleans-based Disability Resources:
• Accessible transportation
• Disability travel resources
• General disability resources
For more information about the Color of Violence III, please go to our website,
www.incite-national.org, e-mail us at cov3_2005@yahoo.com, or call us at (504) 2807285.
Also see below for more detailed info about the conference.
The Color of Violence III is organized by INCITE! Women of Color Against Violence.
See you there!
What is the Color of Violence III?
The many forms of violence experienced on a daily basis by women of color around the
world amount to nothing less than a global war on Women of Color. Color of Violence
III will provide an opportunity for women of color to develop and share organizing
strategies to address this global assault on women of color.We will share strategies on
how to stop this war on all fronts, including: domestic violence; sexual violence; denial
of reproductive rights; police brutality; the "War on Terror"; poverty; violence against
bisexual, lesbian, intersex, transgender, and two-spirit women of color; attacks on
immigrants' rights and Indian treaty rights; gentrification and denial of affordable
housing.
INCITE! is a national activist organization of radical feminists of color advancing a
movement to end violence against women of color and their communities through direct
action critical dialogue and grassroots organizing.
The Color of Violence is an international gathering and action of women of color
workers, organizers, artists, students, and activists organizing to stop the war on women
of color.The goals of Color of Violence III are to:
• Examine the various forms of violence committed against women of color.
• Mobilize women of color from diverse walks of life, throughout the country to
organize around all forms of violence in their lives.
• Share organizing models and build skills to strengthen our grassroots organizing.
More info about the Color of Violence III, including conference schedule, registration,
logistics, and how you can help is at this website: http://www.incitenational.org/conf/index.html
Click here to go directly to registration information: http://www.incitenational.org/conf/registration.html
If you have any questions about COV III, please contact:
Janelle White
University of New OrleansWomen's Center
(504) 280-7285
e-mail: cov3_2005@yahoo.com
Here's a Sneak Peek of Workshops & Discussions Happening at COV III:
• Redefining "National Security": The Price Women of Color Pay for Militarism
• Real Life Strategies For Community Accountability
• Globalization, Militarism, and Indigenous Women's Struggles
• Naming the Injustice: Building Accountability Within Communities of Color to
Prevent and Intervene in Child Sexual Abuse
• Organizing in the South
• Criminal Injustice: Violence Against Native Women
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Heterosexism and Empire
Organizing Against Violence Against Women of Color with Disabilities
From High Tech Stalking to Cyber-Organizing: Beyond the Digital Divide
Maroon Media for Sistahs: Radical Media Organizing
Popular Education in Immigrant and Refugee Communities - Building Immigrant
Women's Leadership and the Intersection of LGBT/Immigrant Rights
• Radical Words: Intersections between Activism, Publishing, and Women's
Bookstores
• Mothers in Prison: Organizing Against the Injustice of the Child Welfare System
• Global Lockdown: The Transnational Prison Industrial Complex and Women of
Color
• The Tactic of C.R.A.C.K& Other Methods of Eugenics & Population Control
• Racism in Health Care: Uncovering the Violence Against Women in the Medical
Industrial Complex
• Colonization and Reparations: The Boarding School Healing Project
• Grassroots Mobilization of Refugee Women to End Gender-Based Violence in
Conflict Settings
• Abduction Politicks: Exposing Racism in the Transnational Adoption Industry
• The War on Terror's Impacts on Women in Iraq and Iran
• Gender-based Police Violence
• Organizing to Protect the Rights of Homeless Women
• Day Laborers Organize to Stop Worker Abuse
• State and Interpersonal Violence Against Puerto Rican Women: Visions for the
Future from HumboltPark, Chicago
• How to Organize an Anti-Street Harassment Campaign in Your Community
• Cruzando Fronteras: Women and Life in the Borderlands
• Women of Color Resist Trafficking: Beyond "Saving" Women
• Transnational Organizing Possibilities In Solidarity with African Sisters
• Global Economy and Gender Violence: Latinas, Mexicanas and Chicanas Resisting
Global Violence in the Caribbean, Mexico, and the United States
• You Can Take the Girl out of the Community, But You Can't Take The Community
Out Of The Girl: Connecting Activism with Research
• The Revolution Will Not Be Funded - Lessons from the Conference and Strategizing
to Move Forward
• Out of the Basement: The Hidden Collusion of Drugs, Hip Hop and Sexual Violence
• Beyond Hip Hop Ho's & Hot Mamas: Women of Color and Media Justice
• Moving from Victims to Victors, An Anti Racist Philosophy for Personal and
Community Empowerment
• Taking it to the Streets: Women of Color and Direct Action
• Resisting Isolation: Anti-Racist and Women of Color Grassroots and Alliance
•
Work in Rural and Small TownUS contexts - possibilities, problems and
strategies
Women Briefly
Campaign to Promote the Visibility of Disabled Women in the UN Convention
Since 2002 the United Nation Member States are negotiating "A Comprehensive and
Integral Convention on Protection and Promotion of the Rights and Dignity of Persons
with Disabilities." Although the human rights of persons with disabilities are fairly well
respected in the actual draft, the gender perspective is missing throughout most of the
document. The special needs of and the particular types of discrimination experienced by
women with disabilities are hardly mentioned or referenced.
Therefore, to make States, Parties and society in general conscious about the particular
types of discrimination experienced by women with disabilities and to report about their
situation, it is critical to include the gender perspective. Furthermore, the existing
Convention on the Elimination of all Forms of Discrimination against Women (CEDAW)
is not sufficient on this point as it does not have a disability perspective, and States
Parties of CEDAW are not obliged to report on the situation of disabled women. For
more information about the campaign, visit http://www.un-disabledwomen.org/.
Children & Youth
High Praise for Disability-Inclusive Early Childhood
Campaign in Maldives
By Barbara Kolucki (bakoluck@aol.com)
The Maldives is a tiny country in terms of population. Approximately 300,000 people
live in 199 of 1200 islands over 90,000 square kilometers. In the recent Tsunami disaster,
one third of the country's people were directly affected. Homes, schools, livelihood,
access to clean drinking water, basic health services - have been destroyed or damaged in
some way. The tourism sector has been crushed and will take years and years to repair.
And because the maximum level of any island is 8 feet above sea level, the entire country
remains vulnerable.
"First Steps" early childhood public education campaign
All of this is only one reason why the "First Steps" Early Childhood campaign stands out
as so remarkable. A few years back, in 2001-2002, the campaign made an impact on the
lives of disabled children - and all children. For 52 weeks, everyday, three times a day on
radio and television, a message about infants and young children ran through the hearts
and minds of every Maldivian. Each week there was a different message with local
Maldivian children and families as "actors". Topics ranged from breastfeeding to learning
through play to keeping dangerous medicines out of reach of young children. Nothing
like this had ever happened in the Maldives, or many other countries, before...or since.
Ms. Rina Gill, then the Assistant Representative of the UNICEF Office in the Maldives,
has always been a pioneer in "thinking outside the box" in terms of both management and
communications. She led the team (to which I was a consultant) to develop a
communication strategy and campaign that included various Ministries and media.
Skepticism at outset
An evaluation was conducted of the campaign in 2004 and the team was honest in saying
that, at the onset, they were "skeptical". They stated that, "social marketing, like
commercial marketing, is known to work best when selling one main idea....persistently
over a period of time. First Steps premise seemed flawed by dealing with too many
messages...stretched over nearly a year."
Yet, in the end, the evaluators called it "A Giant Leap for Humankind" because it did
upset these same marketing theories. The analysis did confirm that even 2 years after the
"campaign", changes in attitude and behavior could be directly linked to this campaign.
The evaluators said that the communications campaign not only "touched people's lives
in the Maldives as nothing had done before" but it brought about a "paradigm shift with
regard to increased sensitivity and awareness of children's development and childcare
practices".
Significant finding: frequency of disability topics
One of the most significant findings of the evaluation is the number of times the TV and
radio spots on the topic of disability were mentioned. They states that "high recall spots
include children with Down Syndrome being treated "normally" and that many people
discussed "opportunities for children with disabilities." Even more surprising were the
apparent fundamentally behavioral changes in what the evaluators called the "difficult
areas like interacting and caring for children with special needs".
Disability-related findings
The evaluators specifically emphasized:
"In a significant achievement, the campaign created awareness for children with special
needs. The focus on children with Down Syndrome helped many (disabled) children and
their families. Social acceptance of mentally and physically challenged children
improved and even child-to-child interactions became increasingly positive following the
campaign. Parents with mentally challenged children felt they needed more specialized
help in dealing with their children. Special children must be included in play like other
children, and schools should be sensitized in dealing with them."
It is important to point out that the disability focus was only one small part of the
campaign. Several spots focused on disability - early detection, inclusion, the fact that a
child who is disabled can be a joy to a family, etc. But the majority did not. The spots that
did, however, were positive and powerful.
Campaign offsets previous invisibility of disabled children
And, previously, disabled children and adults were nearly invisible in the Maldives.
Here is a sample of the "disability-flavor" of the campaign:
• Aiman was a bubbling four year old with Down Syndrome. He and his mother,
Haamida, who was pregnant at the time, participated in a TV spot, along with several
of Aiman's cousins. Both of Aiman's parents agreed that it was useful to highlight how
much they loved their son to other families. We see Haamida and Aiman play hideand-seek around large trees. Then Aiman and his cousins run around in the sand and
play with a ball. Haamida, through a voice-over, talks about her son with so much
love in her voice and tells how his cousins are always asking for her to bring him to
their home. She says that Aiman brings joy to their family just like any other child. He
is, indeed, the star of this TV spot.
• A new mother is shown simple ways to test if her baby can see and hear. She is also
told that even if her child has any problem, she should treat her child as she would any
other child.
• A young girl with cerebral palsy is telling a story to her mother and father on a radio
spot. The girl is delightful and keeps on giggling - much to the delight of her parents.
• A group of older children use a huge parachute to play a game with younger brothers
and sisters. Some of the children are disabled. Some are not.
• A book is written about how older brothers and sisters can help their younger
brothers and sisters learn through play. Two of the featured older siblings are
disabled. One is an adolescent brother who has Down Syndrome. Another is a teenage
sister who is blind.
QuickTime™ and a
TIFF (Uncompressed) decompressor
are needed to see this picture.
First indigenous children's books inclusive of disability
Prior to producing the campaign spots, a series of books for children were produced.
Never before was there an indigenous book about a disabled child. It was quite difficult
to find a family who would agree to have their child photographed for this project. One
family, Yaish's family (seen in these photos) agreed. They said that prior to this book,
people in the street would either ignore them, or say very cruel things to Yaish and his
parents. But after the book was published, and even more so after the TV and radio spots
were broadcast - Yaish was a celebrity.
As in every country, it took courage for Yaish's family to say yes. It took courage for the
Early Childhood team members to find the little girl whose speech was poor and use her
on a radio spot. It took courage for every "first" family who agreed to open their lives to
everyone in their country. It took courage for Ms. Gill and the UNICEF team to pioneer a
campaign and was "outside the traditional box" in terms of development and social
communications. But it made a difference. A big difference...
Education in Russia: Christina, 5, Wins Her Court Case
By Oleg Pronin, Perspektiva. Perspektiva is a disability advocacy organization based in
Moscow and details can be found on the web in English: http://Perspektiva-inva.ru/indexeng.shtml
Since July 2004, Perspektiva has been developing a disability legal advocacy network in
4 regions of Russia as part of a USAID funded project, The Protection of the Human and
Legal Rights of Russians with Disabilities: Access to Education. The goal of this network
is to provide support for disabled persons to defend their rights to gain equal access to
education. Although Perspektiva's lawyers are still in the process of learning, Perspektiva
and its partners have initiated 19 court cases and won 5 of these cases.
Christina is 5 years old and lives in a small town on the northern border of Moscow. She
has Down's Syndrome and, like many children in Russia with a developmental disability,
has been excluded from the educational system in Russia.
Christina's mother, Elena, made her plea to the local Board of Education to accept
Christina into a nursery. Her request was rejected because there are no specialized
nurseries in their town; Christina was also not welcome into a regular nursery as there are
no special programs and teachers in the regular schools. In addition, they named the
"instructions" of the Ministry of Education that was passed in 1968 that forbid disabled
children from studying at mainstream preschools.
When Elena's request was rejected, she submitted a complaint to the Prosecutor's office.
But the Prosecutor defended the Department of Education's decision. Then Elena decided
to speak out for the rights of her child by taking her case to the courts. Elena contacted
Perspektiva's lawyers for support and Perspektiva's lawyer Oleg Pronin represented Elena
and Christina in court. Additional technical support was also provided by Sergey
Koloskov, the President of the Moscow Down Syndrome Association.
Our legal position was based on the following:
The Russian Constitution and Legislation on Education guarantees the right of each
person, including a disabled child, to an education. Hence the Departments of Education
has the responsibility to establish the necessary conditions for the child to exercise this
right, e.g. hire the necessary teachers, and to provide financial and methodological
support. Moreover, their reference to the Instructions passed in 1968 is also unlawful as
these instructions have lost their validity. Finally, a lawsuit was filed against the local
Department of Education.
Perspektiva's lawyers prepared explanations on this case, presented information about
legislation supporting our position. In order to prove that integrated nurseries exist, a
specialist from one Moscow based inclusive nursery was invited to make a statement
about the work of her preschool.
In the end, the judge accepted our position and made a decision in favor of the plaintiff Elena and her daughter Christina. The judge declared that rejecting Christina is not
justified by the lack of special conditions at the nursery. This is not a reason for depriving
her of an education. Furthermore, the Department of Education is responsible for
providing such support for Christina.
The Department of Education's decision was deemed illegal and the courts demanded that
the Department accommodate Christina at the preschool. This decision has already gone
into effect.
The importance of this decision cannot be overestimated. Not only does it provide the
opportunity for Christina to go to school, it sets a precedent for other similar cases. One
of the most popular explanations given by the department of Education for rejecting a
disabled child is insufficient funds. As a result many disabled children are deprived of an
education. By disseminating information about this case, more and more parents and
lawyers will be inspired to take these kinds of cases to court as they have this successful
example to guide them.
Russia: Young disabled activists tackle attitudes in
mainstream schools
By Denise Roza, Perspektiva (droza@online.ru)
Since 1998, Perspektiva has been training young disabled people to lead disability
awareness trainings in mainstream schools. Today, young disabled people all over Russia
and five cities of the NIS (Newly Independent States) are being invited to lead trainings
in local schools; school administrators sign agreements with them or disability NGOs to
provide this service. It has become a very popular way to change the attitudes of children
and their teachers about disabled people. It has also proved to be an effective way to
involved disabled youths in their communities. Not only do they lead trainings, they
negotiate with schools and local board of education officials and lead activities that will
bring together these children with their disabled peers. Finally, the disability awareness
trainings are a great way to prepare the school for the inclusion of kids with disabilities.
In a study carried out in Nizhny Novgorod about attitudes of teachers toward inclusive
education, teachers of those schools that had hosted the disability awareness trainings
were more inclined to see inclusive education being implemented in the very near future.
From Discrimination to Inclusion in Schools in the Republic of Komi
In the Komi region of Russia, in the city of Ukhta, special educational programs are
provided for children with various disabilities with 44 classes organized in the city's
schools for children with developmental disabilities. However, a recent seminar
organized by the Ukhta NGO of Disabled People revealed that most parents do not know
how to go about ensuring that their children get an education. They don't know where to
find appropriate schools. One woman in Komi reported that a child, who has a vision
impairment, has been excluded from classes and short excursions with his peers because
the teacher says "he moves too slowly."
After more than a year of lobbying efforts and court cases for funds to implement
inclusive education activities led by the Ukhta NGO of Disabled People, the President of
the Republic of Komi has committed to providing support for the first model inclusive
school. Some $15,000 has already been allocated.
Inclusive Education Efforts in Samara
Statistics from Samara's Committee for the Protection of Mothers and Children show that
4,027 children in Samara are registered as disabled with 829 of these children under the
age of 7. Of these children, 955 attend regular city school; 892 study in specialized
schools for disabled children; 455 are educated at home and 896 receive no instruction
whatsoever. And an additional 800 children get no education at all.
Also at Samara State Pedagogical University, a young man, who maneuvered his
wheelchair through the university's mud-soaked courtyard to enter the building, was
denied entrance simply based on the fact that upon entering the rector's office, his hands
were covered in mud. Unfortunately, decisions to admit or not admit disabled students
rest with each university's faculty, but disabled students are, according to Russian law,
supposed to be given preference for admission. However, after seeing this young man's
muddy hands, the faculty began a search for other reasons to deprive the young man of an
opportunity to advance his education.
Desnitsa, one of the most active Disability NGOs in the region, has been promoting
Access to Education for two years. In those two years they have succeeded in
establishing a parents' NGO, lobbying for a Municipal Program on "Integrated
Education" and assisting eight children to get access to their local schools. They are also
negotiating with a local university to set up a personal assistance program for families
with a disabled child. Students will soon provide assistance to a disabled child as part of
an internship program. The parents are starting to lead peer support groups for parents.
Finally, the parents, together with lawyers and disabled activists are assisting other
parents to get access to education.
Disability Activists in the Volga Region Demand Equal Access to Education
According to official statistics, there are 4,135 disabled children of school age in the city
of Nizhny Novgorod, where 1,131 study at specialized institutions, and 351 children are
at home. There are more than 7,000 disabled people ages 16-22, but only about 100 of
them go to college. Although there is a similar situation in cities throughout Russia, some
positive changes have occurred with the help of Invatur - a Russian Disability NGO and
partner of Perspektiva in Nizhny Novgorod. For more than three years Invatur has been
focusing on improving access to education. They have established a very effective
coalition of disability NGOs and have established close and very productive ties with
local schools and universities.
At a roundtable discussion, led by the regional disability organization Invatur, various
officials were present, including Nizhny Novgorod's Education Minister S. Naumov, who
had formerly labeled children with learning disabilities as "uneducable." During the
course of the roundtable, however, Mr. Naumov said, "There are no uneducable children;
all children need to learn." This was a great step forward in changing the general attitude
toward inclusive education held by the Education Ministry. Naumov also noted that the
educational system needs to be revamped to include these children, but he stressed that
this needs to be done "in steps."
Following more than one year of lobbying efforts by Invatur, a Disability NGO and
partner of Perspektiva, Nizhny Novgorod's Education and Science Ministry finally
allocated 800,000 rubles (approximately $27,000) from the region's budget to make local
schools accessible to disabled students. After a meeting between the Education Minister
S. Naumov and representatives from Invatur, held on June 15, three schools were
identified to be fitted with the appropriate ramps, railings, and lifts to make them
accessible to disabled children. Invatur will continue to promote inclusive education in
their region through advocacy and public education activities.
All of the activities mentioned in this report are part of a project funded by the United
States Agency for International Development, Moscow office, and implemented by
Perspektiva, together with its US-based partner, the World Institute on Disability.
Disabled Youth Activist Teams Launched in Russia &
Newly Independent States
By Jennifer Geagan (Jennifer@wid.org), World Institute on Disability
Young disabled people in Russia and other Newly Independent States face daily
discrimination and attitudinal and physical barriers to an adequate education,
employment opportunities and other life activities. Significant barriers to accessing and
participating in the mainstream educational system are: schools are inaccessible; parents
of children in mainstream schools are often opposed to having their children study with
disabled children; the majority of teachers and administrators in mainstream schools and
universities have had little or no exposure to disability issues; and old negative social
stereotypes and misconceptions about disabled people still prevail. Like many parts of the
world, the vast majority of disabled children from these countries receive separate and
unequal education, if any at all.
With funds from the US Agency for International Development, the Office of Security
and Cooperation in Europe and the Belgian Delegation, the US-based World Institute on
Disability, the Russian NGO, Perspektiva, and their seven partner NGOs have completed
the first year of activities of the three-year project to empower disabled youth. The
project supports disabled youths, parents and other allies in challenging 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.
In a short time, the project has tackled both physical and attitudinal barriers, resulting in
ramps for community centers, schools and community based awareness trainings,
production of advocacy videos and public education programs shown on local television involving thousands of disabled youths, adults, their families and local officials and
supporters throughout the region.
Three International Training Seminars for Youth Activist Teams held in Moscow
In the first year of this project, teams of young disabled activists (DYAs) representing
NGOs that promote the social integration of disabled persons in their countries learned
skills and gained practical experience to become more effective disability advocates and
leaders in their communities. The training seminars devoted time for sharing and learning
about other teams' experiences, and this structured sharing allowed the young disabled
activists to learn about the successes and difficulties of their peers and colleagues in other
cities and countries, providing them with a forum for solving some of their own
problems. The primary training structure of sharing of experiences and problem solving
through group interaction also proved to be a very positive role modeling experience for
all of the participants.
The first international seminar in the series was held in January 2004 in Moscow.
Afterwards, many of the teams returned to their communities and held press conferences
to launch their projects. The second seminar was held in June in conjunction with an
international conference on inclusive education. Team coordinators participated in the
conference with delegations from their countries. The seminar that followed strengthened
the network of disabled youth activists and the bonds of friendship already established at
the first seminar. The third seminar was in November in conjunction with the Breaking
Down Barriers Film Festival, the Second International Disability Film Festival in
Moscow, and each team contributed films or public service announcements to the
festival. The DYAs were united in their desire to learn new methods and ideas that they
could implement locally through their project activities and participated with enthusiasm
in all training activities. The training room was always teeming with enthusiasm, energy,
new ideas and passion, and everyone took advantage of the opportunity to discuss their
problems and successes with the other teams.
DYA Teams work together across conflict zones to achieve common goal of
inclusion
Disability leaders from regions previously in conflict often work across political and
geographic borders out of necessity to establish cooperative relationships with other
disability NGOs. In the aftermath of the civil wars of the 1990's, characterized by
ongoing political upheaval and change, and the economic difficulties of the post-Soviet
era, several DYA Teams participating in this project are working across their borders of
geographical and political conflict. For example, although their countries are in a "frozen
conflict" with each other over disputed territory, the DYA Teams from Armenia and
Azerbaijan have been working together as part of the international network of disabled
activists since the beginning of this project.
The Republic of Georgia and the region of Abkhazia are also in a frozen conflict with one
another as a result of Abkhazia's desire to be recognized as an independent state. Over the
last 5 years, the Georgian Coalition of Disability NGOs and Veterans and the Abkhaz
Forum of Disability NGOs and Veterans established a relationship to share information
and resources with each other to achieve common goals that address the needs and
promote the rights of disabled persons in each of their societies. This informal exchange
of information and resources has increased the desire of both disability coalitions to
deepen and strengthen their relationship and engage in practical collaborative activities
that are based upon shared values and mutually beneficial outcomes. When
representatives of the Abkhaz NGO, AIS, a member of the Abkhaz Forum, and the
Georgian Coalition of Disability NGOs and Veterans met in January 2004 in Moscow
with representatives from WID and Perspektiva, they requested to participate in the
international network and use the opportunity to further promote understanding and
cooperation between each other and serve as a model for conflict resolution between civil
societies in conflict. In June, with funds secured from the OSCE and the Belgian
Government, DYA Teams from Sukhumi and Tbilisi joined the project, using the project
as an opportunity to cooperate across their zone of conflict and work together to achieve
the common goal of inclusive education and the full participation of persons with
disabilities in their societies.
DYA Team activities impact communities from the Black Sea to Lake Baikal
In spite of the various political and economic climates in each of these countries, in 2004
between seminars, DYA Teams based in Yerevan, Baku, Samarkand, Sukhumi, Tbilisi
and two Siberian cities, Gorno-Altaisk and Ulan-Ude, provided training and peer support
for hundreds of disabled youths and parents, led disability awareness trainings for more
than 3500 students at mainstream schools, and led sessions for hundreds of professionals
including journalists and teachers. They were successful in getting their local media to
cover their project activities, and they also organized disability film festivals, negotiated
professional partnerships, educated government officials and made films and public
service announcements about access to education and other disability issues. The
activities of the DYAs have also resulted in the construction of ramps in the centers of
several cities in the region.
Several of the teams translated project materials into their local languages and are
conducting sessions in Armenian, Azerbaijani, Uzbek and Georgian in addition to
Russian. Each team implemented community advocacy projects, experienced unique
project successes and achieved unanticipated but positive outcomes as a result of project
activities. Following are some of the highlights of the first year of project activities from
each of the teams.
Samarkand
Despite the terrorism in their country last April that delayed some project activities, the
NGO Hayot's DYA Team from the ancient Silk Road city of Samarkand produced a
video, "We Are Here!" and launched a massive media campaign. The team succeeded in
getting lots of media coverage for their activities, including free TV spots during prime
time to show the films from the 1st and 2nd International Disability Film Festivals in
Moscow, the PSA and the video produced as part of this project.
The team was also very successful in fundraising and managed to raise $5-7,000 in spite
of the economic situation in Uzbekistan and the lack of a legal framework supporting
fundraising activities. These funds were raised with the help of local media, primarily
TV, as part of a campaign held during Disability Awareness Week. They were able to
solicit funds and support from some of the larger local companies, and many of these
companies have now expressed an interest in hiring disabled people.
The Uzbek team also produced a 35-minute disability awareness performance introducing
ten rules of etiquette for the media and the social model of disability that they debuted for
200 university students, administrators and staff. The performance was very well
received and will be shown at schools as part of the project's disability awareness
trainings.
After the success of the team's disability awareness sessions in the schools, local
authorities began to express a sincere interest in collaborating with Hayot, a partnership
that initially seemed impossible. Hayot is currently developing a new employment project
with local authorities that have committed to providing funds to pay salaries for young
disabled people to conduct training at schools.
Yerevan
Beneath the snowy peak of Mount Ararat, the NGO Bridge of Hope DYA Team from
Yerevan worked in two cities: the capital, Yerevan, and Ijevan in northeast Armenia, the
center of the Tavush region. The municipality of Ijevan was impressed by the social
advocacy project conducted by the DYA Team in their community. The team built a
ramp at the entrance of the cultural center of the town, and the event was celebrated by a
performance by young disabled actors of the Bridge of Hope Theatre. The local TV
channel covered the event, and the mayor of Ijevan promised to eliminate physical
barriers in their city by 2008. This new program will start in 2005 by making the central
part of the city accessible to persons with disabilities during the scheduled renovation of
community roads. The city government of Ijevan also decided to fund Bridge of Hope to
organize a disability awareness TV campaign for in Ijevan in 2005.
The Yerevan DYA Team has been very successful in soliciting media coverage and
involvement in project activities. More than 40 journalists from print and broadcast
media submitted materials for the media competition, and the winners were announced at
an award ceremony on December 3rd. The team also raised an additional $2000 for the
media awards from the Danish NGO, Mission East.
Journalists in Armenia are changing their language about disability, primarily as a result
of the seminars and materials disseminated by the DYA Team and Bridge of Hope, and
are using less stereotypes and more appropriate terminology to describe disabilities and
persons with disabilities. Publicity about the social problems facing persons with
disabilities and the importance of equal opportunities has become more frequent, and
public behavior including stereotyping and prejudice against persons with disabilities is
slowly improving. Armenians are starting to acknowledge the rights of persons with
disabilities to participate equally in society.
Ulan Ude
In the Buryat Republic where the Siberian steppes reach the southern edge of Lake
Baikal, the Barrier-Free Foundation DYA Team from Ulan - Ude conducted a successful
media campaign, receiving coverage from local TV stations for various project activities.
Perspektiva's animated PSAs promoting inclusive education were shown on all local TV
stations, and the team also made a film about the relationship between one of the
members of the team, who has a vision impairment, and her guide dog that was shown at
the Breaking Down Barriers Film Festival.
As part of their social advocacy project, the team built ramps with the sponsorship of
several local businesses and support from local authorities. The Municipal Center for
Children's and Youth's Creativity had been inaccessible to many people with disabilities.
Although students from all over the city attend the Center where various festivities for
children are usually held, the building was not accessible to many disabled children and
youth prior to the construction of the ramps. An architect from a local company
developed the construction plan, and building materials were provided by local
businesses. Local authorities provided no funds for the project but did express their
support, and the two ramps into the Center were completed in October. A Grande
Opening was held and attended by government officials and donors and covered by the
local mass media.
The team built another ramp into the movie theater where the project's Disability Film
Festival was to be held. At the Disability Film Festival, approximately 1000 people saw
films from the first Disability Film Festival in Moscow. The festival turned into a true
community event, and basic audio description was also provided for people with vision
impairments, making the theater and the film festival accessible for people with all types
of disabilities for the first time.
Gorno-Altaysk
In this remote Siberian city in the Altai Mountains just north of the border of
northwestern Mongolia, the NGO Vozrozhdenie DYA Team from Gorno-Altaysk
attracted the attention of local authorities during their rally, "A City for All." More than
100 people with disabilities participated. After the rally, the Commission on the Social
Protection of Disabled People of the State Assembly reviewed the demands of the
participants and developed a plan for addressing compliance issues with the Federal Act,
"On Social Protection of People with Disabilities in Russian Federation." The Mayor of
Gorno-Altaysk sent a written response to their demands that included a list of buildings
that will be made accessible. So far, ramps have been built at four government buildings,
the Central Telegraph and several local shops.
The team also produced a short documentary, "Vysota" ("Height"), with a local TV
station that was screened at the Breaking Down Barriers Film Festival. The winners of
the PSA competition were also broadcast on local TV and radio, the first time local TV
and radio had ever aired PSAs on disability.
In addition to conducting disability awareness trainings and other project activities in
their city, the Gorno-Altaysk team wanted to reach disabled people in distant locales
spread throughout such a vast region as the Altai Republic, so the team conducted
disability awareness workshops at places where children, youth and their parents from
more remote areas congregate, such as summer camps for children including 'at risk'
youth. As a result of the disability awareness sessions conducted in the schools and the
camps, local officials have decided to fund and support educational programs for disabled
children.
Baku
On the western shores of the Caspian Sea, the NGO Lotos' DYA Team from Baku held
their annual event, "Pictures on the Road," as part of the project's disability awareness
campaign. The exhibition attracted more than 150 participants and was very well covered
by the mass media, highlighting both the event and the theme, access to education for
disabled people in Azerbaijan.
Several members of the Baku team, as part of their mass media campaign, were
interviewed on BBC-Baku. The team discussed the barriers to education for disabled
students and perspectives on inclusive education in Azerbaijan.
Baku is the largest city in Azerbaijan, but many disabled people live in towns and regions
far from the capital. Recognizing the isolation experienced by many disabled adults and
children living in more remote areas, the leaders of the Baku team's peer support groups
are now training other participants to lead groups. As a result, peer support groups are
now being held in more and more regions and are starting to reach people in the more
remote areas of Azerbaijan.
Tbilisi
In the valley of the Mtkvari River beneath the towering peaks of the Caucasus Mountains
in Tbilisi, the Georgian Coalition of Disability NGOs and Veterans DYA Team joined
the project with the Abkhaz Forum of Disability NGOs and Veterans ' team from
Sukhumi later than the other teams. After receiving extensive training from Perspektiva
trainers to catch-up with the other teams, the team met with Ministry of Education
officials, were given their support for the disability awareness trainings at mainstream
school in Georgia and launched their disability awareness trainings in the fall. Local
schools have been very supportive of the school trainings and the youth activist teams in
both cities.
The DYA Team from Tbilisi also received ample press coverage for their activities,
including the school disability awareness sessions. The team also submitted a PSA
produced by a member of the Georgian Coalition that won a prize at the Breaking Down
Barriers, and a local movie theater has agreed to show their PSA . Local TV stations have
agreed to air the PSAs as well as the team's film, when it has been completed, along with
other Moscow Film Festival films, including the Sukhumi team's film in support of the
cooperative relationship between the Tbilisi and Sukhumi teams and in support of
increasing tolerance between the two civil societies.
The team also conducted a disability awareness training for the Tbilisi Youth Parliament,
students from 14-17 years old from several regions of Georgia. The seminar was held in
the National Parliament building, and as a result, these young parliamentarians are
planning more joint activities including a national rally on "Education for All" and
disability awareness trainings at schools and universities in their regions. The team also
held sessions for medical students and is planning a session for members of the Georgian
Parliament
Sukhumi
Isolated on the eastern shores of the Black Sea due to an ongoing conflict with Georgia
concerning recognition as an independent state, the Abkhaz Forum of Disability NGOs
and Veterans DYA Team from Sukhumi also joined the project later than the other teams.
After receiving extensive catch-up training from Perspektiva trainers, the Sukhumi team
launched their project activities in September and produced a film on the lives of disabled
people living in Abkhazia that was shown at the Breaking Down Barriers Film Festival.
The entire DYA Team made appearances in the film and participated in its production,
and the film was shown twice on the Abkhaz national TV station.
The DYA Team from Sukhumi received significant mass media coverage for their other
activities, and during a series of meetings, the management of local mass media outlets
expressed a willingness to support the project's goal of increasing awareness of disability
and the issues facing persons with disabilities through their activities. Journalists have
also agreed to participate in seminars on disability awareness and sensitivity.
Unfortunately, the political crisis resulting from last fall's first democratic presidential
election ever held in Abkhazia delayed the start of some project activities. Nonetheless,
the project caught the attention of their authorities and gained the support of Ministry of
Education and the Parliament. Meetings were held with school directors, education
officials and the Vice Speaker of the Parliament to discuss leading disability awareness
trainings at local schools and to educate them about the project and issues of inclusive
education for disabled children. The DYA Team was finally able to begin conducting the
disability awareness sessions in their local schools at the end of November. Furthermore,
the Parliament Deputy Speaker suggested developing legislation for inclusive education
in Abkhazia after the elections.
The Sukhumi team also produced a unique performance, "The New Year's Fairytale,"
with both disabled and non-disabled children at the House of Youth. The performance
was a big hit and was covered by the evening news. This event was the first of its kind at
the House of Youth and after the success of this event, the Youth House director decided
to host more disability related activities including a disability film festival for children.
All of the DYA Teams continue to conduct disability awareness sessions in schools, peer
support groups, media campaigns and community social advocacy projects in their
communities. The teams are looking forward to gathering again in April 2005 for more
training and to share their experiences. More project activities are currently planned and
funded through October 2006.
My Wonderful Mum: Children's Book from Vietnam
By Barbara Kolucki (bakoluck@aol.com)
All children want to say these words about their mothers. Every parent would like to hear
these words from their child. And this happens, for parents and children, disabled and
not.
What is much less likely, however, is for the rest of the world to see or hear these words
about disability. And that is exactly what happened in Vietnam in late 2004.
Early childhood development training
It was part of Early Childhood Development Training in the city of Hue in the center of
Vietnam. Participants included representatives from the Health, Education, Water and
Sanitation, Child Protection and Media Sectors as well as the well-respected Vietnamese
Women's Union. Representatives of disability organizations were included as well as
individual "talent" such as photographers, illustrators, poets and musicians. After
receiving training in some of the latest research in the field of early child development,
participants viewed media from several countries around the world for and about infants
and young children. They analyzed these and discussed if and how they could be adapted
to a Vietnamese context.
Included in these media examples were numerous presentations of children and adults
with disabilities. Sometimes they were the focus of a story, sometimes they were not.
Sometimes they needed help, sometimes they helped others. Sometimes we knew they
were disabled, sometimes we did not.
Research into support of caregivers
Another very important topic of discussion was the importance of raising the selfconfidence of caregivers of young children - and the impact that has on their relationship
with their child. The most recent research in the field of early child development
continues to confirm that the support given to the caregivers who are in greatest need the poorest, the minority groups, caregivers with disability - can have the greatest impact.
This means that programs and media need to include and empower all caregivers, focus
on their strengths, and give confidence as well as nurture competence.
Collaboration
Participants were then divided into groups and asked to develop "prototype" indigenous
media - either radio or television spots - or children's books. This was a new activity for
the participants in many ways. In nearly all instances, most "sectors" worked alone. And,
in nearly all instances, the media and creative people were briefed about an assignment
and then they too, worked alone. But, here and now, they were being asked to plan, create
and produce together. Was it possible? They also had to work with non-actors. They were
asked to find real people, those who were the most disadvantaged, not to use "make-up,"
to use colloquial speech and to be as simple and creative as possible. It was a first and
everyone was just a bit anxious.
Depictions
The book group was asked to use photographs and to depict care and nurturing between
and parent and young child. They had to identify a caregiver and demonstrate ways that
she/he cared for the child throughout the routine of the day in a loving and responsive
way - even if they were very poor or disadvantaged in any way. They were asked to try to
find a disabled parent, but everyone knew that in the short time, it might be difficult to
get someone to agree to this in a community where disability was not often, if ever, in the
media.
QuickTime™ and a
TIFF (Uncompressed) decompressor
are needed to see this picture.
Transitions
The photographer who worked with this group had worked with the Early Childhood
UNICEF Project over the past two years. He changed remarkably - from someone who
took a "beautiful photo" - to someone who captured the magic of the care between the
child and caregiver and could make the person looking at the photo say to themselves
"I want to do that with MY child."
QuickTime™ and a
TIFF (Uncompressed) decompressor
are needed to see this picture.
The day of the presentations, there was palpable excitement in the air. Each group created
something new and quite wonderful for Vietnam. Coming to Hue, we knew we did not
have the support systems in place that we would have in Hanoi, the capital. It was more
difficult in every respect.
Results
And so, on that day, we were extremely pleased with the results. But none more so than
with the book shown below called "My Wonderful Mum." A book for the rest of Vietnam
to see.
Children & Youth Briefly
Compiled by Jennifer Geagan (jennifer@wid.org), World Institute on Disability, and
Barbara Duncan
CNN story reports tsunami horror for disabled children
Screaming with fear, disabled children at a shelter in Galle, Sri Lanka, lay helplessly in
their beds as seawater surged around them. The tsunami roared in on the day after
Christmas. Some of the desperate children gripped the rafters as the water rose inside the
one-story Sambodhi shelter. Others floated away on mattresses to their deaths, according
to witnesses. Just 41 of the 102 residents of the home survived, according to the
caretaker. Read the CNN report online.
oneminutesJr. competition 2005 invites video submissions
The oneminutesJr. competition 2005 will take place in Amsterdam at the end of
November. The competition is linked to the yearly international oneminutes festival of
the Sandberg Institute held in The Netherlands every November. Youth between 12 and
20 years old living in Europe or Central Asia are invited to submit a oneminute before
September 15, 2005. The categories this year are the open category, "the best of the
world jr.: any topic, theme or genre" and the thematic category, "inside-out: everybody
sometimes belongs, sometimes is being left out. This can be a choice or against your will.
Whether you are 'in' or 'out', your position defines your role in society. Tell us your
experience or opinion." A jury will select their favorites that will be shown during the
festival. Awards will be given to the most outstanding submissions. More information.
Improving Employment Outcomes for Youth with Disabilities: Learning from the
Youth Transition Process Demonstration Innovations
The Disability Research Institute's Youth Transition Process Demonstration (YTPD), a
Social Security Administration (SSA) sponsored demonstration project designed to
improve employment outcomes for youth with disabilities, developed innovative
approaches for improving the transition from school to work, primarily by integrating
systems and linking services, for youth who receive or may eventually receive Social
Security benefits due to disability. Researchers in this project worked closely with each
of the seven YTPD sites to develop a rigorous research design, assist the sites in
developing their evaluation plans, and conduct cross-site analyses. The final project
report describes the technical assistance provided to the Youth Transition Demonstration
(YTD) sites and recommendations regarding the feasibility of randomized assignment in
the evaluation of the impact of approaches being utilized within and across sites to
improve employment outcomes for youth with disabilities. Download the report in Word.
SNEInfoDesk database on European programs covering special education
The aim of this multilingual database is to provide in a simple way, key information on
the support - funding and information - available within European Programs that applies
to the field of special needs education.
SNEInfoDesk is mainly addressed to people with special educational needs, professionals
and organizations from the SNE field, with particular emphasis upon the "un-initiated" potential participants who have never been involved in European programs or are simply
not aware of the existence of such possibilities at the European level. For more
information, visit SNEInfoDesk.
U.S. Medical Research on Captive Populations Included Disabled Children
In recent years, thousands of documents on government sponsored medical research in
the 20th century on captive populations, including disabled children in institutions, have
become declassified and available to the public through the U.S. Freedom of Information
Act .
Stories broadcast on CBS 60 Minutes in February 2005 utilized this material to
demonstrate that thousands of disabled children had been utilized in radiation
experiments during the 1950s and early 1960s. The documents reflect a time when, as
one researcher described it, "Children in orphanages, children in homes of the mentally
retarded, these [were] all good populations from the sense of medical research becuase
you [had] an easily accessible group of people living in controlled circumstances, and
you [could] monitor them."
This was a CBS feature story on children with disabilities utilized in radiation
experiments, "A Dark Chapter in Medical History," February 9, 2005. This story was also
featured in a Justice For All news item.
Resources & Book Reviews
Disability Studies Quarterly Winter 2005 Issue
Available Online
The Winter 2005 issue of Disability Studies Quarterly (Volume 25, no. 1) has just been
posted.
Please go to DSQ's home page (www.dsq-sds.org) and click on "Current Issue" -- the
second listing under "Main Menu."
This issue features six "General Papers," whose topics range widely, from: government
disability-related policy and practices (three articles concerned with different politicocultural entities: India, the UK and the US); an examination of a religious theme; a
continuation of the Fall 2004 theme about disability studies in education of health
professionals, specifically medical students; and even an analysis of Hip-Hop from the
perspective of disability activism.
In addition, there is a Commentary analyzing poetry, and a Fiction piece. Finally, this
issue has a rich trove of fully 10 reviews of books and film, including one review of a TV
show.
For a limited time only, the entire issue is available free. In a few weeks, this and future
issues of DSQ will become "password protected." Members of the Society for Disability
Studies will receive unique passwords and continue to have free access. Others are
encouraged to become SDS members (a link to the SDS membership form is on DSQ's
home page), but will have the alternative of taking a paid subscription.
February EQUITY: Building an Inclusive Ownership
Society
EQUITY e-newsletter: February 2005
Disability and Asset Building Communities Working Together
http://www.wid.org/equity
In the February EQUITY:
Building an Inclusive Ownership Society
http://www.wid.org/publications/?page=equity
FEATURE ARTICLE:
Finding Common Ground: Supported Living Principles and Asset-Based Community
Development
http://www.wid.org/publications/?page=equity&sub=200502&topic=fa
Looming cuts for numerous poverty-reduction programs promises tough times for both
the Asset Building and Disability communities. Megan O'Neil, Access to Assets Project
Coordinator, provides timely insight on creative financing methods being used to ensure
that people with disabilities are included in the American Dream of homeownership.
SPECIAL SECTION:
2005 NCIL Statement of Values On Social Security and Private Accounts
'Social Insurance and My House on Fire'
http://www.wid.org/publications/?page=equity&sub=200502&topic=ss
Bryon MacDonald, California Work Incentives Initiative, and the National Council on
Independent Living (NCIL) encourage thorough analysis of potential changes to Social
Security- including disability insurance in the discussion.
PROGRAM OF THE MONTH:
Planning for a Better Life: Enhanced Life Options
http://www.wid.org/publications/?page=equity&sub=200502&topic=pm
Nina Hamberger, Enhanced Life Options- New Hampshire, operates a national Special
Needs Center providing expert technical assistance on different types of trusts for people
with disabilities. ELO manages trusts for individuals with disabilities in New Hampshire,
whose financial situations require knowledgeable, trustworthy and caring support.
PROFILE OF THE MONTH:
A Second Chance: Peter Badenhausen
http://www.wid.org/publications/?page=equity&sub=200502&topic=profile
After living in the State Mental Hospital, Peter is now clean and sober and has a renewed
sense of purpose to his life. With the support of Community Enterprises Corporation and
Collaborative Support Programs of New Jersey's IDA program, Peter is about to buy a
home of his own.
TIP OF THE MONTH:
Asset-Based Community Development
http://www.wid.org/publications/?page=equity&sub=200502&topic=tm
A simple concept that may help Community-Based Organizations weather the tough year
ahead. The ABCD Institute offers a useful 'Capacity Inventory' tool to help map local
resources.
EQUITY RESPONDS: WID Answers Your Questions
What is 'Supported Living'?
http://www.wid.org/publications/?page=equity&sub=200502&topic=responds
LEARNING & NETWORKING RESOURCES:
Informative websites of interest to both communities
http://www.wid.org/publications/?page=equity-resource#current
CONFERENCES & EVENTS:
http://www.wid.org/publications/?page=conf
World Institute on Disability (WID) is a non-profit public policy center dedicated to the
promotion of independence and full inclusion in society of people with disabilities.
WID's Access to Assets (ATA) program provides training and technical assistance to
asset building and disability organizations seeking to improve the inclusion of people
with disabilities in poverty reduction programs. In addition, ATA provides information
and referral services to individuals with disabilities and conducts federal and state policy
analysis on related issues.
NEW! Toll-Free Technical Assistance Hotline: 1-866-723-1201
Do you have questions about asset building strategies or serving people with disabilities?
Please contact:
Megan O'Neil
World Institute on Disability
Access to Assets Project Coordinator
megan@wid.org
Is there an article, conference, or website that you would like to have included in
EQUITY? All comments and suggestions are welcome.
We encourage the widest possible dissemination of EQUITY- please forward this
message to colleagues and friends.
To subscribe or unsubscribe to EQUITY, please send an email to equity@wid.org
EQUITY is disseminated in plain text in an effort to be as accessible as possible to a
variety of audiences. If you have difficulty reading this email or accessing our website,
please send comments to equity@wid.org
EQUITY is a publication of World Institute on Disability's Access to Assets Program and
is supported by the Asset Accumulation and Tax Policy Project. The Asset Accumulation
and Tax Policy Project (AATPP) is a partnership of The Law, Health Policy, and
Disability Center at the University of Iowa College of Law, in collaboration with
Southern New Hampshire University School of Community Economic Development, the
National Federation of Community Development Credit Unions, the World Institute on
Disability, and the National Cooperative Bank Development Corporation. AATPP is 100
percent funded by U.S. Department of Education grant #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.
January 2005 Global Access Travel E-Zine
Global Access Travel Network E-Zine
Volume VI, Number 1
January 2005
Copyright © 2005, Global Access
http://www.geocities.com/Paris/1502/
1. UK Trains to be Accessible by 2020
UK reader, Cynthia Stewart, wrote to share the news that by 2020 all United Kingdom
trains and stations will be accessible to disabled people. According to Stewart, disabled
people are urging the government to complete this necessity sooner than that date. In the
meantime, the government is endeavoring to make existing trains more accessible as they
are remodeled.
Interested readers may want to read about UK disability advocates Ticket2Ride campaign
at www.timetogetequal.org.uk/news/05/121204.shtml
2. Ethiopia in a Wheelchair
Gordon Rattray, of Belgium wrote to announce his new web site, which focuses on
accessible adventure travel. Gordon, whose disability is quadriplegia, features his own
Ethiopian adventure on his site. Don’t miss his fascinating off-road wheelchair journey to
Blue Nile Falls at www.able-travel.com
3. Accessible Cuba Trip
Joan Simms, an occupational therapist and Consultant to Travelers with Special Needs in
Toronto, Canada, wrote to announce her group’s plans for an accessible trip to Cuba.
Simms writes: "I have recently joined forces with a group of companies who joined their
expertise to develop Access Holidays Canada Inc. to provide travel experiences for
seniors and travelers with special needs. We have been fortunate to find a travel
wholesaler specializing in Cuba to develop a program with us to provide accessible
accommodation, wheelchair accessible bus transfers from the Havana Airport and
professional care givers."
Contact Joan at:
Joan Simms
Consultant to Travelers with Special Needs
Phone: 416-818-2592
Fax 416-755-5864
email: joansimms@bellnet.ca
4. Anchorage, Alaska
Using a wheelchair on snowbound sidewalks and streets is not for babies. While most
U.S. city ordinances usually require business to keep the sidewalks clear, that doesn’t
always happen promptly, and the results can be staggering for disabled people. Janine C.
sent in the following link to a recent Anchorage Press article that illustrates how
challenging a snow-covered city is for a local wheelie.
www.anchoragepress.com/archives-2004/featurevol13ed51.shtml
5. Bangkok, Thailand: Accessible Skytrain Stations
Graham Smith sent the following suggestions for using the accessible Skytrain stations in
Bangkok, Thailand.
Elevators for Mobility Impaired Persons
1. Elevators to assist disabled persons wishing to access the BTS system are available at
the following BTS stations: Siam (Cen), Morchit (N8), Asoke (E4), Onnut (E9) and
Chong Nonsi (S3).
2. At ground level, use the intercom provided next to the lift doorway to ask for
assistance. A BTS staff person or security guard will arrive to assist you in using the lift
to the ticketing concourse.
3. At the ticketing concourse show your Disabled Association Membership Card for free
passage. Free passage is from the five stations noted above to any destination on the
system only. If you are not a Disabled Association member, you will need to pay
appropriate fare. You will be issued a travel document indicating your exit station and
need for assistance. BTSC staff will escort you to the appropriate platform for your
destination and assist you in entering the train car.
4. Upon arrival at the destination station, BTS staff will collect your travel document and
escort you to the ground level.
6. Australia/New Zealand
Dr. Scott Rains, of San Jose, California, who writes the Rolling Rains Report, shares his
insights of traveling in Australia & New Zealand.
www.geocities.com/Paris/1502/aunzrains04.htm
Iranian Rehabilitation Journal Launched
The University of Social Welfare and Rehabilitation Sciences intends to publish the
Iranian Rehabilitation Journal bi-annually and in this Journal we will attempt to introduce
knowledge of rehabilitation, research, technology and our experiences in rehabilitation
and disability issues.
We also intend to develop relative and mutual collaborations by the university, joint
educational-research programs and inter-sectoral afairs, all over the world.
The first edition of IRJ was published in April 2004 and has been sent to hundreds of
scientific and Rehabilitation centers and universities and teachers in Iran and overseas.
The Research Deputy of USWRS would appreciate having your comments and
recommendations, and will consider leading, original, review articles and the related
papers about rehabilitation, disability issues, etc.
Contact our correspondent, Chief editor, Majid Mirkhani at irj@uswr.ac.ir. The Journal
may be found online at www.uswr.ac.ir/IRJ/
Book Review: Point Source -- thriller involving Multiple
Sclerosis
By John M. Williams
I love reading thrilling novels packed with international intrigue, suspense, action,
conundrums, arrogance, murder, ambition, character development, independence,
subliminal messages and contemporary political history. In Point Source by Dr. Richard
G. Pellegrino, readers are treated to a unique medical thriller with the qualities that I love
in a novel. Readers are swiftly carried from day-to-day and event-to-event over three
months in the lives of people who accidentally stumble unto an international terrorist plot
by North Korea’s Kim Il Sung, one of President George W. Bush’s three Axis of Evil
leaders, to assassinate South Korean statesman and candidate for the presidency of South
Korea Bo Li Yeung. The weapon of choice is a biological weapon of mass destruction.
The author has two missions in the novel. One is to awaken the readers to the symptoms
and the daily physical and mental challenges accompanying MS, and to illustrate the
courage it takes to adapt to the progressive limitations of the disease. The second mission
is to entertain the reader with a who-done-it mystery that operates on several levels. He
succeeds with both missions.
Unlike any other book I have read that covers MS, Point Source provides personal
insights into the disease, and celebrates the courage; struggles, determination, and sense
of humor people require to deal with it. The characters with MS are convincingly human,
and when I finished the book I did not have the impression that MS individuals are
supermen and women performing Herculean feats. Instead I learned that MS affects 2.5
million people worldwide. Through the sometimes contentious relationship between Dr.
Angela Donatelli and her mother Marie, who has MS, the reader discovers that this
progressive disorder of the nervous system is far from well understood. The deterioration
of motor control is a central symptom of the disease, but there is a mental dimension as
well; one that affects a patient's cognitive functions, from memory to the ability to
complete complex tasks. Not everyone with MS experiences such cognitive impairment,
and for those who do, the effects are usually very subtle. While I know there is no cure
for MS, I learned the cause of MS is equally unknown.
The book educates the reader on the evolving struggles that people with MS face daily. It
exposes the imperative of finding a cure. Knowing what I do about the promise of stem
cell research, then I believe stem cell research should be funded, not only because it
might help with finding a cure for MS, but also for its potential in curing or alleviating a
host of other immune-system and degenerative diseases. The book also shows the hope
that people with MS have in the medical profession’s efforts to discover, treat and
eventually cure the disease.
Dr. Pellegrino is one of the country’s top neurologists, and he specializes in working with
MS patients. In this medical thriller he shows his intimate knowledge of the disease by
imagining the onset of neurological disease among an extraordinary number of patients
who are developing MS symptoms in Hammerstone, Arkansas. His understanding of the
psychological and physical effects of MS is expressed primarily through Linda Tackett
and Marie Donatelli. Both live with MS, and both want to remain independent, as long as
they can, before their disease debilitates them. They exemplify the way that MS
individuals draw strength and support from their families and friends to deal with the
effects of the disease, and the personal bond between these two women clearly illustrates
the benefits of such support.
Linda and Marie are invigorated by assisting Angela in discovering the cause of this
seemingly inexplicable mass outbreak of MS symptoms. Angela, one of the book's two
principal characters, is a neurologist like the author, and her experience in dealing with
MS certainly comes from Dr. Pellegrino’s.
In reading about Linda and Marie's daily struggles with MS, I found myself rooting for
their courage and praising their independence. Angela’s coming to terms with her
mother’s MS is one of the underlying themes of the book, and Dr. Pellegrino does an
excellent job in showing how their relationship is strengthened through communication,
education, and love, as well as by Angela’s personal realiztion that Marie fiercely
defends her independence for the sake of her own psychological benefit.
In the back of this book are letters to Dr. Pellegrino from people with MS expressing
their feelings about the disease. Having worked with people with MS, the writer
poignantly conveys the hopes and fears in Point Source’s characters. The book’s
characters and letters reveal true profiles in courage.
I was entertained by the book’s characters and plot. Linda and Marie introduce Angela to
the prospects that an extraordinary epidemic of MS may be sweeping through
Hammerstone. Persuaded by Linda and Marie to solve this puzzle, Angela is medically
challenged to discover how so many people, all from the same small community, could
suddenly begin showing MS symptoms. We learn that the medical emergency was caused
when LukeYancy unsuspectingly opens a Pandora’s box he should not have touched.
Intellectual innocence can cause disasters, and though a man, Luke has the innocent
intelligence of a child unable to realize the consequences of his disastrous curiosity.
The humanitarian in Angela compels her to find the mysterious causes of these
symptoms. This takes her to Hammerstone, where the mystery expands to include the
murder of a former medical colleague, Jack Burns, whose thirst for fame has led him to
develop a new and horrible biochemical weapon. Burns’ death produces a plethora of
questions for Angela. Does his death have anything to do with the tidal wave of people
developing MS symptoms? What is it that is causing the outbreak of these symptoms?
Are these symptoms temporary or permanent? Can the causes of MS finally be
explained?
The megalomaniacal Burns was once a viral researcher and a former colleague of
Angela’s, who had loved titillating her by developing computer riddles for her to solve.
Before his death, he had e-mailed her a riddle that, once solved, explains his work and his
crime. Now Angela faces a life and death challenge to solve the riddle, entering his
program, and discover the secrets hidden therein. Unlocking the riddle is the challenge of
a lifetime for Angela, who realizes that if she fails many others will die. To find a
solution to the task before her, she enlists the help of Hank McLain, Hammerstone's chief
of police, and calls in the Center for Disease Control in Atlanta.
In Hammerstone, Police Chief McLain enters not just the mystery but Angela’s life as
well. Motivated by the death of his brother Mark, who died fighting the fire that killed
Burns, career officer McLain is obsessed with finding out who is responsible for his
brother’s death. He is a detective’s detective, and he persistently searches for clues and
assistance in both Hammerstone and Little Rock. You know that, through sheer grit, his
analytical powers, and his willingness to accept help in solving his brother’s murder, that
he will ultimately triumph. As a character, Hank seems more appropriately suited for bigcity detective work, rather than sidelined in a small town like Hammerstone. In future
novels, I would like to see him working in a big city.
Hank meets Angela at the ruins of Burns’ house and, after some joshing, they become
friends. Bonded by common pursuits, these two self-determined individuals develop a
strong relationship that one concludes will eventually consummate in bed. Still, while the
relationship blossoms, the two stay focused on their quests to learn the causes of both the
disease outbreak and the violent death of Burns.
The book brings out the close-knit relationships that people in small communities where
everyone knows everyone. For instance, when forced to send his deputy Thelma Wilkins
out to warn local residents to watch what they eat and drink, the names Jennifer, Merle,
Stedmans, Jimmy McMasters roll off Hank's lips as easy as breathing. You know he is
their protector, savior, and friend. Point Source also brings out the scarcity of resources
that small towns have and the need to send crime scene evidence to larger cities for
testing.
One of the strengths of this book is the singleminded focus that both protagonists bring to
discovering answers to their questions. Angela and Hank won’t be stopped by any
authority, including the federal government, as they try to solve their cases. Their focus is
aggravated by FBI Special Agent John Holmes, an arrogant, self-centered Darth Vader
carrying a badge. Holmes is determined to establish a possibly criminal relationship
between Jack Burns and Angela, althrough the facts do not support the charge. His “I am
above reproach attitude” shows why a post-Patriot Act America must curb the powers of
ambitious police who think they are above the rule of law. In his pursuit of Angela to
discover what she is working on he says, “These are federal search warrants and a
subpoena for her medical files. We’re going in hard, we’re going in fast, and we’re going
to find out just what our little local doctor has to tell us.” Later, at Angela’s house to
discover potentially damning information against her, Holmes’ Gestapo style is useless in
the face of Marie's charm and hospitality when she uses both to defuse a potentially
explosive situation. Dealing with MS daily requires creativity and a sense of humor, and
this situation shows how Marie has developed both.
Holmes's behavior spurs Angela and Hank to solve their mysteries. In the course of their
investigation, they succeed in humbling the arrogant FBI agent at several key moments,
and I cheered each time. He reminds me of J. Edgar Hoover, a pompous idiot, who was
more egotist than policeman.
In a further touch of realism, Dr. Pellegrino adds intrigue to the plot by having his North
Korean conspirators pose as Chinese. This is a subterfuge that North Koreans have used
in recent years with some success. It is not uncommon for North Korean agents to assume
Japanese and Chinese identities when spying undercover. Pellegrino says he intentionally
used this ploy to call attention to this insidious policy.
Point Source brings home the reality that a biochemical-terrorist attack can strike any
time and any place, and that fanatics don’t care about their lives and the people they kill,
whether individually or in mass. The book tells us that biochemical weapons are deadly
and readily available to the highest bidder. I believe the author is telling us subliminally
that the country needs to be vigilant in our war on terror.
Point Source is a classic story of good triumphing over evil, both medically and
judicially. Angela and Hank are confident, thoughtful, courageous professionals, with a
strong understanding of right and wrong, and who utilize their backgrounds in a climatic
way to prevent an international incident involving bio-chemical weapons in Little Rock.
The book does not mention whether their government honors them for their heroism.
However, we know that Angela is honored by the people whose lives she saves. And
Hank? What is his reward? Read the book for an answer.
Angela and Hank are stoic anti-heroes who have other adventures in front of them. I look
forward to reading more of them.
Point Source is Dr. Pellegrino’s first novel, and I hope it is not his last.
Published by Moments of Discovery Press in Hot Springs, Arkansas to secure a copy dial
1-866-786-7954 or visit www.mdthrillers.com.
Book Announcement from South Africa: Nothing
About Us Without Us
Dr. William Rowland's book Nothing About Us Without Us: Inside the Disability Rights
Movement of South Africa is an inspirational work written by an authentically inspiring
author. Only a person who is at the same time a leader, a disabled person and a truly
committed person could have produced a work of this import. The book offers something
of everything: it is an insider's tale, a human tale, a tale of triumph over adversity, a tale
told by an experienced expert and a tale of the triumph of the human spirit. It is above all
a readable, accessible book that should appeal to a wide variety of book-lovers.
A glance through the table of contents reveals a lively, dynamic title for every part of the
book. Reading the text itself uncovers the delights that can be imparted only by that rarity
an authority that can really write. There is no sentimentality here, only clarity in
exposition of the world of the disabled and their struggles to be seen as ordinary, useful
and, as with all human beings, sometimes exciting people.
Dr. Rowland writes of these people with deep understanding, whatever their disabilities
may be, highlighting their often innovative and heroic efforts to be entirely independent
and at the same time loved for their humanity. The story he tells is first and foremost a
story of achievement, not achievement within the confines of the narrower rules
sometimes prescribed by the unknowing for disabled people, but achievement defined by
any rules. A careful reading of the book discloses that it is not that the disability
movement in South Africa has nothing more to fight for, which would be too idealistic.
Rather, the movement has pulled off a coup on the open playing field of life, where
reality and ideals so often clash.
The book can be recommended to experts and laymen alike. No one who has read it, can
fail to have their conscience pricked. No one who has read the book can ever see a
disabled person in quite the same light again.
The first two chapters describe the onward rush of the disability struggle as part of the
broader political movement in South Africa.
The next chapter deals with economic empowerment, as an extension of the struggle into
new areas. Rowland then gives an account of the transformation of the SA National
Council for the Blind, and describes three unique initiatives in South Africa around new
models of service delivery and self-help.
This is followed by five interviews, each giving a personal perspective on the Disability
Rights Movement, and recounting particular aspects of its history. In the last chapter,
rural development and the spread of the movement throughout the Southern African
region are taken up.
Dr Rowland concludes:
"So these were some of our adventures, but the point of it all was to spread the message
that by organizing ourselves we could change things around us and the attitude of
governments. This we have continued to do everywhere in the countries of South and
Southern Africa for twenty years and more, and yet the process is far from ended."
This book is also available in braille and in audio editions from the South African Library
for the Blind, Grahamstown.
For enquiries, contact
Natalia Molebatsi
Tel: (012) 429 3495
Fax: (012) 429 3449
email: molebn@unisa.ac.za
www.unisa.ac.za/press
Resources on Disability Statistics
An Online Resource for U.S. Disability Statistics
http://www.ilr.cornell.edu/ped/disabilitystatistics/home.cfm
About this site
What is the objective of the DisabilityStatistics.org?
The DisabilityStatistics.org web site condenses several data sources into a single, userfriendly, accessible, Internet resource. It also provides essential background information
on key issues related to disability statistics.
What is the history of DisabilityStatistics.org?
For several years, the Cornell Rehabilitation Research and Training Center for Economic
Research on Employment Policy for People with Disabilities (RRTC) has generated and
distributed a large volume of national statistics on the occurrence and prevalence of
disability and the employment, income, and poverty status of people with disabilities.
These statistics were often calculated over many years, across states, by type of disability
and/or across demographic characteristics. Numerous scientific research papers, policy
briefs, academic journal articles, book chapters, and research summaries have drawn on
these disability statistics. Recently, the demand for additional demographic and statistical
information has grown as a wider audience becomes interested in disability statistics.
To meet these needs, researchers at Cornell University designed the
DisabilityStatistics.org web site to make disability statistics and related demographic
information available and accessible to a broad audience via the Internet.
Newsletter on U.S. Disabled Latinos: Proyecto Visión
The latest issue of the Proyecto Visión newsletter is now available online. It includes
information about young disabled leaders and the future of the disability rights
movement; working from home; disability & self-esteem; the intersection between Latino
culture & disability in the United States, and more. Go to http://www.projectvision.net to
read the full stories.
We're Not a Burden
Getting the word out about disability rights to the Latino community sometimes means
making a show of it. On a warm Sunday in May, a group of Latinos carry signs in
Spanish advocating rights for people with disabilities. This group forms a strong
contingent in the Cinco de Mayo parade in the Fruitvale District of Oakland, California...
Youth Leadership: the Future of the Disability Movement
I used to wonder what would happen as independent living movement advocates age and
the community must look to new advocates to take action in the future. But I’m not
concerned. I have confidence in the youth of today. Especially in rising leaders like Zach
who are leading the charge to advocate in the 21st century...
Fighting the “Bendito Syndrome” with Self-Esteem
When a baby is born she comes in the world without a sense of self-esteem. As the child
begins to develop, the messages the child hears throughout their life will often determine
how that child views them self. Tell a child they are unable to do something and the child
will believe it. In the Latino culture many mothers are very protective of their children.
Often a child who is disabled is raised to depend on family members...