An International Summit Conference on Independent Living

Washington, DC
September 21-25, 1999
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Portraits of Independent Living  in Eleven Countries

Introduction

This section features portraits of IL development in various countries and cultures. These are not intended to be  comprehensive reports on IL, but rather, a description of some of the unique  features of the IL landscape in each of these countries. Countries reporting include: Brazil, Canada, Japan, South Korea, Nicaragua, South Africa, Sweden, Thailand, Uganda, the United States and Vietnam.

In his report "Surviving Without a Safety Net in Brazil," Eugene Williams sees that the first steps towards the disability movement in Brazil came in the late 1960s and early 1970s, with the formation of social and athletic groups in Rio, Sao Paolo and other cities.  While these groups were not overtly political, they provided a place for discussion among disabled people and generated a sense of commonality, and, perhaps most importantly, were early forms of self-organization.  Not surprisingly, given the economic realities of Brazil, these groups often undertook activities such as the selling of lottery tickets and candy, and crafts production.  The goal of these income-generation projects was usually allowing their members to contribute financially to their families.²

Rosangela Berman-Bieler, a key activist in Brazil's disability movement who became a quadriplegic in the 1970s, speaks of going out at that time with other disabled people from the rehab center to a see a movie. "In those years, it was very unusual to see someone using a wheelchair in the streets of Rio, but five or six people together using wheelchairs was shocking, it was a revolution."³  While disability activists have often pushed for an end to institutionalization and many see community-based rehabilitation as ideal, institutions, even if run for disabled people rather than by disabled people, have often been a locus for disabled people to meet each other and forge a shared sense of purpose.  They have sometimes used this new identity to seek to change the institutions in which they found themselves.

The disability movement in Brazil did not evolve in isolation: many of its early activists were part of other social movements, which flourished after the end of years of military dictatorship.  The United Nations International Year of Disabled Persons was another key factor in the development of self-advocacy and self-help:  for the first time, on a broad international scale, the notion was promulgated of disabled people not in terms of medical and service needs, but as people who deserved equality and inclusion.  The UN World Program of Action Concerning Disabled Persons emphasized self-advocacy and full participation of people with disabilities⁴ and was crucial in asserting self-organization as a key concept in disability strategy.⁵

The concept of "independence" is sometimes misinterpreted in Latin cultures as referring to the ability to do everything oneself, although the disability movement continues to promote it as referring to autonomy, empowerment, and self-help.  The issues on the agenda for independent living projects in Brazil are often very different from the ones central to those in industrialized countries.  For instance, in Latin cultures, personal assistance services are almost always performed within the family, by family members or servants, rather than by an outsider who is employed specifically for the provision of those services.  Independent living centers in industrialized countries are usually funded through government programs combined with private sector donations.   Centro de Vida Independente in Rio de Janeiro, the first independent living center to be established outside of the industrialized world, provides workers to businesses, and uses the surplus from these contracts to fund its center.⁶  It offers services that in more materially affluent societies would be provided by rehabilitation centers and state-funded social services.⁷
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The situation of aboriginal populations within Canada reminds us that a category such as "developed nation" often cannot be applied across an entire country.  Doreen Demas, Advisor for Persons with Disability Issues for the Assembly of Manitoba Chiefs, reports that First Nations people with disabilities are ten to fifteen years behind the rest of Canada in the development of independent living.⁹ This is true, despite the fact that the incidence of disabilities is two to four times higher in this community than in Canada as a whole.¹⁰ Jurisdictional issues are one of the biggest roadblocks faced by aboriginal people with disabilities, since "[r]esponsibility for most aboriginal people rests primarily with the federal government. On the other hand, responsibility for service delivery to persons with disabilities belongs to the provinces."¹¹

A committee of Canada's House of Commons quoted Ian Hinksman, Director of the British Columbia Aboriginal Network on Disability on this issue.  "If you live in Victoria, which is where I live, the Department of Indian Affairs office is in Nanaimo, which is about 70 miles away...anyway, you go up there and they say, 'Okay, but the way we see your problem is that it's a medical problem and Medical Services [Health and Welfare Canada] is back in Victoria.'  So now you have to go back to Victoria. You then go to Medical Services...and they say, 'Oh yes, we can help you - where do you live?' Well, if you're like 50% of the aboriginal people...in B.C. you live off the reserve. So you say I live in the city of Victoria. 'Oh, what are you doing here? You had better go back to MSSH.'  You say, well I've been there. They say, "They're the people you have to look to...'  After you've been around the circle a few times, you just say to heck with it and give up."¹²

These jurisdictional problems are combined with the fact that aboriginal people often live in remote areas, inaccessible even by road, which makes services hard to obtain.  Even aboriginal people with disabilities living close to urban settings often find cultural insensitivity, language barriers and inability to respond to their needs causes those services to be inaccessible.  In general, in developed countries, disabled people's demands are for access to places and services on the same basis as the non-disabled population.  However, a needs assessment of disabled people in the aboriginal communities makes clear that housing, transportation, and employment are chronic problems for the non-disabled in those communities as well.  Of course, for people with disabilities these are compounded, and solutions that work in urbanized areas - such as using standard wheelchairs for mobility - are not solutions in communities where there are neither paved roads nor sidewalks.  Home care is more intensive in the many reserves where hauling water and gathering wood are required on a daily basis.¹³    Lack of telephone service was identified as a key problem for disabled people on reserves, a problem which would rarely occur outside of the aboriginal communities.

While IYDP and the subsequent Decade of Disabled People were key events in the growth of the movement of disabled people in many countries, the UN's Decade of Indigenous People brought renewed attention to the needs and rights of Canada's aboriginal populations, many of whom had found it difficult to have their issues heard within disability groups from the dominant culture.¹⁴

Currently, many organizing efforts are focused on obtaining culturally relevant health care, which is one of the first steps towards disabled people empowering themselves.  For instance, native people with disabilities may distrust health care providers, live in isolated communities where health care delivery is piecemeal, or face language barriers.  The naming of a recent conference, "Distant Voices: Embracing the Spirit of Sign," recalled the traditional use of sign language in Indian communities.  Many organizing efforts which are successful in the aboriginal disability community seem to have strong cultural roots, often utilizing a circle in which all have a chance to speak rather than a more hierarchical model.¹⁵

Ms. Demas also reported that cross-border contacts are beginning between aboriginal people of Canada and Native American populations in the U.S.: issues of independent living probably bear more resemblance to each other between those two communities than within the disability community as a whole in their respective nations.¹⁶
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The Human Care Association was founded in 1986 out of the Wakakoma-no-ie in Hachioji located in the outskirts of Tokyo.  Established 20 years ago, the Wakakoma-no-ie is a day-activity center for people with disabilities run by people with disabilities themselves.

It later gave way to the establishment of the first Wakakoma-no-ie, the Second Wakakoma-no-ie, and the Mokuba Workshop, each created according to the various needs and activities of people with disabilities in Hachioji.  As the number of members with disabilities of these centers needing personal assistance services in daily activities increased, it became extremely difficult to find personal assistants on an individual basis.  This great need finally led to the idea of establishing an organization which would provide personal assistance dispatch services.

Because persons with disabilities are so often in the custody of their parents at home and their teachers in school, they are inclined to be not only dependent, but also lacking in basic living skills, such as self-expression, communication with others, including personal assistants, and how to use their leisure time.  The Human Care Association was started in June 1986 to launch two major programs:  the provision of personal assistance services and the organization of independent living programs.

Personal Assistance Services

Personal assistance services are currently being provided by 15 paid staff working for the Association.  Of them, 6 are wheelchair users (both manual and electric) with disabilities, such as spinal chord injuries, polio, and muscular dystrophy.  The personal assistance service provides referrals and personal assistants to those who need help with daily activities such as moving into and out of bed, taking a bath, toileting, cooking and cleaning.  The personal assistants can work at any time of day, as requested.  Although, as a policy, they provide the services within the specified length of time which is from 7:00 a.m. to 11:00 p.m., anyone who faces difficulty at night or early in the morning, including those who have psychiatric and intellectual disabilities or who are elderly, may avail themselves of personal assistance at any time.

There are two kinds of membership in what we call the "Association Service," regular Membership and Care Staff.  Regular members are the service-users who hire personal assistants and receive services, while the Care Staff, who are usually able-bodied, are the ones who provide personal assistance services.  All members are required to pay a registration fee of 1,000 yen and dues of 3,000 yen per year.

As far as the cost of services rendered, service-users pay 1,000 yen per hour (approximately $10 US), plus the cost of the attendant's transportation expenses to the Association's management office.  The office then deducts 100 yen per hour from this amount to pay for coordination expenses, and pays the remaining balance to the pertinent care staff.

The office provides coordination between services users and care staff when needed.  It also takes charge of acceptance and payment of personal assistance fees.

Persons with disabilities, the majority of whom had received assistance from volunteers for a long time, objected to having to the pay system for  personal assistance services in the beginning.  One of the reasons why this system has been adopted is that persons with extensive disabilities are forced to make efficient use of personal assistance services, can learn some basic independent living skills by critically examining their way of life, and by learning to give accurate instructions to their assistants.

Independent Living Program

The Independent Living Program has three parts:  Independent Living Skills Training, Peer Counseling and Overseas Training.

1. Independent living skills Training

The Independent living skills Training Program was developed by the Human Care Association in the context of the socio-cultural situation of persons with disabilities in Japan.  This program is conducted on a group or an individual basis, aiming to enable persons with extensive disabilities to lead more independent lives in their communities, rather than depending on their parents or staying in an institution.  A peer counselor, who is also disabled and has already realized an independent life, leads the program and gives support to participants in their study.  Each program consists of 12 regular sessions, one session per week, with an average of 6-8 persons with disabilities participating in each session.  The content of the program is as follows:

Goal setting,
Identity establishment
Health and medical care,
Communication with attendants,
Human relationships,
Management of money,
Management of time,
Shopping, meal planning and cooking,
Sexuality,
Utilization of social resources.

The Independent Living Program has been conducted for seven years now.  People with various disabilities who wish to live independently, ranging from students in special schools to those under the custody of parents or institutions have participated in the programs.

2. Peer Counseling

The Peer Counseling service is conducted by peer counselors on an individual basis using the co-counseling technique to help those who are suffering from many problems in leading an independent life within the community.  The counselor does not treat persons with disabilities as clients, but rather discusses problems with them as a peer.  Here, the counselor's personal experience of being disabled is important.

In 1988, an intensive course for peer counselors was initiated.  Now, they themselves are to become independent living program leaders, participating in the peer counseling program organized at various IL centers in Japan.

3. Overseas Training Program

The Overseas Training /Study Program is organized every year.  It is designed to motivate persons with disabilities to lead an independent life through the study of physical and attitudinal barrier-free society and accessibility in foreign cities, such as San Francisco and Berkeley in the US, Adelaide in Australia, and Auckland and Christchurch in New Zealand, to name a few.  We have also arranged participation in training at IL centers in Houston, St. Louis, Stockholm, Melbourne, Helsinki, Erlangen, Munich, and Winnipeg.  These trips proved to be very fruitful.

Our aim is not only to provide needed services for persons with disabilities and the elderly, but also to establish a community-based social services network in which persons with extensive disabilities who are now considered unable to participate in productive activities can obtain paid positions and creative work.

Advocacy

The Government's services for disabled persons have been rapidly changing in response to new demands of society.  Especially, our aging society has been forced to rebuild its social security system and nursing care system.  The association has published various books to influence policy makers, and we are directly involved in the drafting of the normal care management system for disabled persons.  At the community level, regular meetings are now held with the Welfare Section of the City Government for consultation of matters directly affecting lives of disabled persons.

This year, the Association organized a training workshop for the staff working at the New Tokyo Airport in Narita, with DPI-Japan.  Each airline company together with ground service company sent two representatives and learned how to treat disabled passengers.  This is a part of preparation for the 8th World Conference of Disabled Peoples' International to be held in Sapporo, Japan, in 2002.

Budget

With regards to funding, in addition to the income generated from dues and services rendered, funding support form the local government is crucial.  The Tokyo Metropolitan Government has recognized the Association's services as extremely valuable for the future building of a welfare state, and beginning four years ago, has given us financial aid.  The assistance of the Tokyo government has stimulated Hachioji City to likewise provide a subsidy to our activities.

Independent Living Workshop/Seminar in Asia

In order to share the expertise concerning the independent living movement, the Association has invited the participants of the overseas study programs to Houston, St. Louis, Stockholm, Auckland, Christchurch, and Winnipeg.  At home, the independent living programs are organized every year jointly with other organizations for leaders with disabilities mainly from Asia.  It ranges from one week to one month.  Approximately 100 leaders with disabilities in Asia have studied the concept of IL, as well as organizational skills and experiences of the IL movement.

The Association has also provided assistance to organize the following workshops and seminars in other Asian countries:

* The 1st Asia-Pacific IL workshop in Manila, Philippines, conducted in January 1994.  Jointly organized with the Stockholm IL Cooperative.
* The 1st Korea-Japan IL Seminar in Seoul, Korea, conducted in May 1998.  Among the participants, four were selected and underwent 2-week training at the Association in 1999.
* The 1st Malaysia IL Workshop in Kuala Lumpur, Malaysia, conducted in August 1999.

In the last 8 years, 83 IL centers were founded in Japan, most of which are learning from the experiences of the Human Care Association and following a similar pattern of development.  The Year 1991 was a landmark for the independent living movement in Japan:  twelve IL centers all over the country met and decided to establish the Japan Council on Independent Living Centers (JIL).  It is the first time in our history that the IL movement has produced a country-level organ which is expected to give much support to potential IL centers now emerging throughout Japan.
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Dongho Kim of South Korea reports that prior to the UN's International Year of Disabled Persons in 1981, there was little public awareness of the situation and needs of disabled people in Korea.  Neither legislation or regulations existed, and Kim states that a welfare law regarding people with disabilities was passed under pressure from the international community, but there was almost no commitment to enforcement and funding.

However, the IYDP did seem to bring about a sense among disabled people that they had rights and an awareness of what had been accomplished in other countries.  In the years from 1981 to 1987, ten disabled people committed suicide as a form of protest against their living situation.  "...in 1984 Sunsuck Kim using a wheelchair killed himself with his suicide note to the Mayor of Seoul.  According to his note physical barriers and miserable situation of his life allowed his death."  His action was particularly important in galvanizing the struggle for better lives for disabled people.

In 1988, the Paralympics were held in Seoul in conjunction with the Olympics.  However, disabled people had questioned whether Korea was entitled to host the Paralympics, given the extremely difficult situations disabled people faced there.  In April 1987 major demonstrations - including a sit-in with 500 participants - focused on the Paralympics were held pointing out the lack of accessibility and accommodations in Korean society in general.  These demonstrations were led by people with disabilities who had been involved in the democratic movement of the 1980s.

With the needs of disabled people brought to the fore, self-help groups began to form which have taken up the task of self-organization and peer counseling.  Central to these new groups are the ideas of organizations being run with the leadership of disabled people and for disabled people's needs not to be seen as "special needs."  These groups have worked for making new transit systems accessible.  Using information from DPI and pressure on both national and international levels, several disabled groups pressured Korea Broadcasting Station to use closed captioning for their programming related to the recent presidential election.

However, Korea's recent economic crisis has caused great hardship among the members of the newly-emergent disability community.  In response to the widespread issues of poverty and unemployment, disabled people have sought to run street stalls, although government regulations have often made this extremely difficult.  In 1995, disabled street-seller Jungwhan Choi burned himself to death in a protest after being arrested.  His death galvanized broad support around the issue of street-selling, bringing labor unions and students in league with disabled self-help groups - although the government has still not relented on this issue.
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Disabled people in Nicaragua have managed to create a broad-based and dynamic movement despite widespread poverty and the after-effects of wars.  The Sandinista uprising against the Somoza dictatorship, and the subsequent Contra war against the newly-established government, resulted in many war-injured people.  As frequently happens in the aftermath of war, renewed attention is paid to people with disabilities, especially those with disabilities acquired as the result of war.  These former combatants - who may be seen as "wounded warriors" or "fallen heroes" - often face less stigma than those whose disabilities are congenital or acquired in early childhood.  However, in Nicaragua attention to the needs of disabled veterans led to increased awareness of and responses to the needs of other sectors of the disabled community.

One of the original organizations of disabled people which grew up following the Sandinista rebellion was the Organizaci¢n de Revolucionarios Deshabilidades (ORD), many of whom met each other while in rehab facilities recovering from war injuries.  With many experiences in common and a commitment to radical restructuring of society, this group soon challenged prevailing norms about disability.¹⁸  Support and funding for the newly-emerging disability movement came from disability rights groups outside of Nicaragua and foreign aid projects. Inspired by ORD, and as an outgrowth of the ferment and social change in Nicaragua at this period, organizations were begun by blind people and deaf people.  Wheelchair building and repair shops were started, along with other income-generating collectives.¹⁹ Los Pipitos, which was begun in the late 1980s, was a group of parents with disabled children: their primary focus was on changing societal attitudes towards children with disabilities from shame and overprotection to an understanding that children with disabilities had the right to be full participants in society.²⁰  As in other developing societies, disability groups often find themselves providing services such as rehabilitation and provision of wheelchairs.

One group active in Nicaragua is the Center for the Promotion of Integral Rehabilitation (CEPRI) which sees its task as working with people with disabilities not only to learn how to cope with disability on an individual level, but also to make needed social changes: in short, rehabilitating society as well as the individual.  CEPRI was founded in 1986 by five disabled Nicaraguans, some of whom had been active in ORD but who wanted to move beyond ORD's focus on those injured in war.  One of their initial activities was a photographic exhibit of people with disabilities, many of which were taken by people with disabilities.  The exhibit was designed to show disabled people not as "victims of war" but as active participants in rebuilding society.²¹  CEPRI has been active in creating community-based rehabilitation projects.  One of their core values is training disabled people as trainers of other disabled people, enabling the organization both to increase the reach of their programs and also to use disabled trainers as role models.²²

Training and Peer Support

One example of CEPRI's outreach throughout Nicaragua is its 10-year old program in urban and ryral  areas for women who are at least 15 years of age and have a disability.  Thus far, more than 25 groups of women have been created, and the next focus will be on extending assistance to women loving in the Pacific region.  According to Lesbia Solorzano, M.D., CEPRI's director of services for disabled women, "Each group receives training in gender issues, feminism, sexuality and reproductive health, self esteem, self-care for women with spinal injuries and legal issues.  Selected leaders then receive training in developiong small businesses, basic accounting and starting cooperatives."²³
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The movement for the rights of disabled people in South Africa has been greatly influenced both by apartheid and the ensuing struggle to bring about equality for South Africa's population. Apartheid has been a direct cause of disability in terms of people injured in the anti-apartheid struggle, as well as through the structural poverty imposed on the Black population of the country.²⁴  Under apartheid, disability benefits were four times higher for whites than for black people, and rehabilitation professionals often had little knowledge of conditions in the townships and impoverished black communities: as Kathy Jagoe points out, "[W]hat use is it to learn to transfer sidewards from a wheelchair to an accessible toilet if you only have a corrugated iron privy in the back yard into which you can't get a wheelchair?"²⁵

During the 1976 anti-apartheid uprising of students in Soweto, many demonstrators were paralyzed after being shot by the police.  After coming out of hospitals, they rejected institutionalization and sheltered workshops, and formed "The Self-Help Association of Paraplegics in Soweto" (SHAP).²⁶  In 1981, SHAP set up a factory employing only disabled people, which was paid for capitalized by outside assistance for the physical building, as well as by the "sweat equity" of the initial thirty workers, who worked for only transportation and a single meal a day for the first six months of the factory's operation.²⁷

In 1980, a few disabled white South Africans attended an international conference organized by Rehabilitation International; they returned to South Africa with the idea of rejecting charity and seeing disability in a social rather than a medical context.  They met with SHAP, who were living the philosophy of independent living.  The interaction between these groups was a vital step forward in South Africa's burgeoning disability movement.²⁸

While the South African government was precluded from participation in the 1981 UN International Year of Disabled People, local groups did form organizations at that time which addressed disability issues - and some of these organizations had disabled members and leadership.²⁹  When political parties were legalized in 1991, disabled groups began to officially affiliate with the liberation struggle and ensured that the issues and rights of disabled people were integrated into the shaping of the new South Africa.  The new  Constitution declares that physical and mental disability are a human rights issue and precludes discrimination on that basis.  Disabled people are now represented in appointed government offices as well as in Parliament.³⁰

"The Integrated National Disability Strategy:  a White Paper from the Office of the President" was developed in 1998 by the office on the Status of Disabled Persons.  This progressive policy was a collaborative effort of disability rights organizations and governmental agencies, supported by the Swedish International Development Authority (SIDA).

Despite the firm commitment of the current government to integration of disabled people into society, life for the majority of disabled people in South Africa is constrained by poverty and lack of accommodations.
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One of the early roots of the independent living movement was the concept of "normalization," which became an important trend in Scandinavian societies in the late 1960s and early 1970s.  Normalization advocated freeing disabled people - mostly those with developmental disabilities - from institutional constraints and enabling them to lead lives that were as close to social norms as possible.  Many activists now bridle at the idea of normalization, seeing it as urging disabled people to aspire to an ideal of non-disability and suppressing what is unique and valuable in the disability experience.  However, at the time of its inception it represented an important break from prevailing norms of institutionalization and assumptions about inferiority.

This emphasis on community living and state funding of PAS (personal assistance services) continues to be a key segment of independent living in Sweden.  In fact, this was listed as the first priority by the Ministry of Social Affairs in its report on compliance with UN standard rules, ahead of accessibility and anti-discrimination legislation.³¹

Adolf Ratzka points out the paradox of disabled people being unemployed and lacking training opportunities while services for disabled people tend to be controlled by non-disabled professionals, who too often provide services that are "insufficient in quantity and quality, carry institutional traits and make us more dependent."   As an alternative, he points to the model of disabled people forming a business or cooperative which can administer these services, providing better quality, income for disability organizations, and jobs and skills for disabled people.

Currently, eight cooperatives for personal assistance users exist in Sweden, administering the government funded PAS program - although individual users recruit, train, schedule and supervise their own assistants.  STIL (Stockholm Independent Living Group) is now an established business with an annual budget of over $14 million.  STIL's board is made up solely of users of personal assistance, since it is felt that non-users of PAS, even if they themselves have disabilities, lack a first-hand understanding.   Ratzka points out that there can also be disadvantages to such service provision programs.  Time and energy must be devoted to the business, taking resources away from political work.  He also points out that the provision of quality services and the generation of an economic surplus may be in conflict.

In 1994 STIL achieved a political breakthrough when the government put forward this model as a cornerstone for new legal reform.  Since January 1994, persons who need more than 20 hours of assistance a week for ...everyday needs...are guarenteed the legal right to receive funds directly from the national social insurance.  As of 1996, the number of persons eligible was 6,200, of the Swedish population of 8.5 million.³²

Peer Training

STIL trains its members so they can train their personal assistants.  We have developed "Boss courses" which over the years have provided some 600 individuals [training] on how to manage the transition from being object of home help services to becoming employers of personal assistants and founders of cooperatives.  STIL staff have also assisted similar cooperatives to develop in Germany, Norway, Belgium and the Czech Republic.³³
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On June 22, 1999, the Association of the Physically Handicapped of Thailand and DPI/Thailand organized a demonstration involving 450 persons with all types of disabilities demanding that the Bangkok Metropolitan Administration make the Bangkok Sky Train system being constructed fully accessible for persons with disabilities.  Service is planned to start December 5, 1999, King Bhumipol's birthday.

Our demands included lifts at all stations, open captioning in all stations and trains, for people with hearing impairments, and tactile guiding blocks on the platforms for people with visual impairments.  In addition, we demanded that Sky Train employees receive training in how to provide assistance to people with different kinds of disabilities, including the elderly and pregnant women.

This action included people who are blind and visually impaired, deaf and hard of hearing and people with physical disabilities.  This was the first demonstration of its kind in Thailand.   All of the city newspapers and television stations covered the event and supported our demands.  The public on the streets and in buses were distributed information and cheered us on.

The day after the demonstration, the Ministry of the Interior called for an immediate meeting for all concerned to discuss these demands.  As a result of this demonstration and our other advocacy efforts, the Bangkok Metropolitan Administration has agreed to all of the demands including accessible lifts, except that lifts will be initially built in only five of the twenty-four stations in the systems, as a first step.  These stations are located in the most important stations.
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After years of dictatorship, Uganda now has what some people describe as "a democracy bug."³⁴  The new Ugandan constitution not only contains provisions guaranteeing protection against discrimination on the basis of disability - it also set aside five Parliamentary seats for representatives of persons with disabilities. This is part of a representational process called the "Movement System," which bases itself in representation of interest groups, rather than a multi-party system.³⁵

The 1996 legislature in turn enacted legislation to provide for representation of persons with disabilities at every level of local government and the appointment of a Minister with responsibility for the elderly and persons with disabilities. The former is estimated to have resulted in the election of 47,000 representatives with disabilities or some 0.5% of the registered electorate.36  Currently, the Minister of State for Disability and Elderly is a disabled woman, The Honorable Florence Naiga.³⁷

Obviously, this formal representation in the government both grows out of and encourages disabled people's perception of themselves as a group with political and social interests in common. The National Union of Disabled Persons of Uganda (NUDIPU), which was formed in 1987, was a pioneer in such an understanding, bringing together disabled people across medical lines.

Action on Disability and Development (ADD), a UK based organization which works together with organizations of disabled persons in Africa and Asia, has long supported the work of NUDIPU. Its current focus is now shifting to the countryside where it will help support and train some of the newly-elected disabled representatives on village and district committees. As ADD staff member Pat Simmons states, "It's a major challenge for disabled persons - possibly illiterate - and certainly with a lifetime's experience of exclusion and contempt, suddenly to find themselves on policy-forming, decision taking bodies."³⁸

At the same time, the notion of independent living in Uganda has been described as "an oxymoron."³⁹ Self-help and self-organization seem much better descriptions of how disabled people improve their conditions of daily life in Uganda, where interdependence and family networks are central to most living arrangements. As in many developing countries, income-generation is a central concern. For instance, in Uganda's capital, Kampala, begging was recently forbidden by the City Council. In response to demands of disabled beggars for something in return, the City Council made available a piece of land next to the Kampala bus park, and eighty people formed the Kampala Disabled People's Business Association, which now leases plots to other business people and runs a rotating loan scheme for its members, generating income for over 200 people.⁴⁰ Similarly, the Uganda Disabled Women Association runs a revolving loan scheme with the goal of initiating small businesses.⁴¹ Disabled people also manufacture wheelchairs, make and sell traditional crafts, and take part in small businesses.⁴²

Another relatively new independent living organization is Mobility Appliances by Disabled Women Entrepreneurs (MADE) which has received training from Whirlwind Women in building locally appropriate wheelchairs. A needs assessment revealed that approximately 200,000 Ugandans need wheelchairs and the number continues to rise as landmines in the north of the country injure people daily.⁴³
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Nora Groce, a medical anthropologist who has done much to trace the history of disability in the US, sees the beginnings of the independent living movement in the "final years of the polio epidemics in the 1950s, when the 'March of Dimes' began financing respirators, attendants and home services to enable persons to leave institutions and return home."⁴⁴ People who would have lived in institutions instead lived with their families, and often attended schools where they might be the only physically disabled student in attendance. This integration was only partial, though, and polio survivors - and their parents - often found themselves struggling for fundamental rights. For example, Ed Roberts was judged by the California Department of Vocational Rehabilitation to be "too severely disabled" to get services. (Ed Roberts later headed the agency that had once seen him as "unemployable.") New York state denied Judy Heumann - who now runs the Special Education division of the US Department of Education - a teaching credential because she was a wheelchair user. The initial leadership of the disability rights and independent living movements often came from people who were post-polio.⁴⁵

While the independent living movement is often seen as having begun in Berkeley, California, Lex Frieden gives examples of several different independent living programs beginning at roughly the same time, and uses the analogy of life on earth springing up separately in many different places.⁴⁶ In the 1960s, a number of students with significant impairments were attending college at the University of Illinois, housed in a modified building on campus;⁴⁷ by the seventies, students were able to attend Boston University by living in a modified wing of an old building. At roughly the same time, a group of people about to leave a rehab center in Houston realized that there were no options for them except to move to a nursing home or their parents homes, and organized "what amounted to a commune," where they lived together and learned to live independently.⁴⁸

The movement for black civil rights, which moved to the fore of the nation's social agenda in the 1950s and 60s, served as a paradigm for thinking about the oppression of disabled people; many activists with disabilities as a "minority group" and cast legislation-such as the Americans with Disabilities Act - in a civil rights framework.

In 1978, a Congressional hearings were held on independent living, and ILCs, funded in part by Federal monies, were established through the passage of Title Vll of the Rehabilitation Act of 1978. While this Federal funding enabled independent living to become a nationwide movement, some feel that the IL movement lost its grassroots nature and severed itself from the disability rights movement.

"One criticism of independent living is the predominantly white, middle-class, physically disabled composition of its leadership. The complexity of intersecting identities, including people with disabilities from various racial, ethnic and socio-economic backgrounds has not been fully addressed by the independent living movement. Additionally, the lack of significant representation of people with less 'traditional' disabilities (e.g., developmental, psychiatric, sensory and systemic) has biased the focus of advocacy and services. Independent living has paid little attention to the needs of elderly people with disabilities. This leaves independent living centers ill prepared for the aging and disabling of baby-boomers. Many independent living centers have had their capacity to focus on advocacy and community development limited by restrictive financing for services. Instead of defining disability community needs from the bottom up, centers find themselves driven by federally mandated priorities and processes."⁴⁹ An additional challenge is that nearly one quarter of newly-disabled people in the US have become disabled as a result of violence: this is yet another population underserved by the current disability movement.

Although the disability movement in the US took much of its inspiration from the civil rights movement, it has usually not had equal participation from African-Americans and others who are not part of the dominant culture. As Kathy Martinez has written, "Many of the disabled people who are currently underserved are African American and Latino men and women who are young, who have dropped out of high school and either are active in gangs or have somehow removed themselves from conventional social institutions....Why doesn't the [independent living] model work for the larger population....is it because the IL movement defines independence too narrowly? What about those who do not aspire to live separately from their families? Are we simply going to define those people as unempowered, or can we look at other models of communities with full inclusion?"⁵⁰
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Vietnam is still recovering from nearly half a century of wars, which have left the country impoverished and lacking the basic infrastructure for the development of a modern economy.

Although it is estimated that up to 4.5 million of the country's population of 78 million are people with disabilities, fewer than 15 percent of disabled people have access to rehabilitation services.  Furthermore, Vietnam's economy is largely agricultural: nearly 90% of disabled people are farmers and rural workers.  This presents a challenge for disabled people in organizing for self-sufficiency, since most foreign models for independent living assume the existence of some markets and small businesses.  An additional barrier is that the government's program of land allocation relies in part on the number of laborers, so families are in essence penalized for having a disabled member.  The state's intentions - to create jobs for people with disabilities, to work with non-governmental organizations to provide a social safety net, and to provide education and rehabilitation - have often been undercut by the country's economic situation.⁵¹  People with disabilities are much more likely to be illiterate than the rest of the population, and frequently lack basic mobility aids such as prostheses and wheelchairs.⁵²  A survey of disabled people conducted in 1994-95 by the Ministry of Labor, Invalid and Social Affairs (MOLISA) found that the majority of people with mobility impairments identified this as their most pressing need.⁵³

As in most developing countries, income generation is central to the improvement of the situation of disabled people.  Most foreign non-governmental organizations working in Vietnam are concentrating their energies on provision of basic medical, rehabilitation and training services,⁵⁴ which would assist the often-isolated members of Vietnam's disabled community to move towards contributing to the family-based economy.  For example, the US non-profit, Vietnam Veterans of America Foundation is one of a number of groups working to establish local production of wheelchairs.  Alistair Hicks of the FAO Regional Office for Asia and the Pacific has detailed a program for "agro-industries" for disabled people.  These include not only wheel-chair farming, but also small implement-making, running repair shops, blacksmithing, bee-keeping, and silk making, activities which could be part of a rural economy.⁵⁵

One notable organization, based in Hanoi, is Bright Futures, originally formed by a group of university students for mutual support and advocacy.  They currently are undertaking projects on vocational training, English and computer literacy for people with disabilities and seeking to raise awareness among both people with disabilities and government policy makers.

Since 1995, the leadership of Bright Futures has been assisted by several US organizations to participate in international conferences on disabled women and independent living and has been supported by Japanese development organizations to participate in regional training programs focused on self-sufficiency.
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¹Berman-Bieler, Rosangela, "The Independent Living Movement in Latin America: Adapting a 'First World' Philosophy to 'Third World' Realities," Portfolio '97 (IDEAS 2000)

²Williams, Eugene, "Surviving Without a Safety Net in Brazil," Ideas Study Visit Report.  International Exchange of Experts and Information in Rehabilitation.  Oakland, CA, WID.

³Charlton, James I., Nothing About Us Without Us:  Disability Oppression and Empowerment, Berkeley and Los Angeles: University of California Press, 1998

⁴Groce, Nora.  The U.S. Role in International Disability Activities: a history and a look towards the future.  A study commissioned by the World Institute on Disability, the World Rehabilitation Fund and Rehabilitation International.

⁵Berman-Bieler, op. cit.

⁶Berman-Bieler, op cit.

⁷Lysack, C.  "IDEAS 2000 Independent Living Survey:  International Findings." WID/RI IDEAS 2000 Fellowship (1996).

⁸A note on terminology: Aboriginal is used to refer to all of the peoples of Canada of indigenous descent and includes the Inuit people of the Arctic and sub-Arctic regions (formerly called Eskimos), First Nations people who are members of bands which may or may not have a treaty relationship with the federal government.  M‚tis people are of mixed Aboriginal and non-Aboriginal descent.

⁹Demas, Doreen, telephone interview, August 23, 1999.

¹⁰Completing the Circle: A Report on Aboriginal People with Disabilities, Minutes of Proceedings and Evidence of the Standing Committee on Human Rights and the Status of Disabled Persons, House of Commons

¹¹Voices in the Wilderness: Aboriginal Women and Disabilities. Published by National Aboriginal Network on Disability, 1992.

¹²Quoted in Completing the Circle: A Report on Aboriginal People with Disabilities,  Minutes of Proceedings and Evidence of the Standing Committee on Human Rights and
the Status of Disabled Persons House of Commons.

¹³National Aboriginal Network on Disability,  A Needs Assessment: Aboriginal People and Disability, September 1990.

¹⁴First Nations Confederacy of Cultural Education Centers, Aboriginal People with Disabilities...an Introduction

¹⁵The Access Newsletter , Federation of Saskatchewan Indian Nations.

¹⁶Demas, Doreen, op. cit.

¹⁷"Facts and Tasks on Human Rights and Self-Advocacy for Persons with Disabilities in Korea - within Disability Movement Perspective," report presented by Dongho Kim at Global Perspectives on Independent Living for the Next Millenium Conference, Washington, DC, September 21-25, 1999

¹⁸Charlton, Jim, telephone interview, July 30, 1999

¹⁹Schneider, Estelle and Hector Segovia, "Development of community rehabilitation in Nicaragua: training people with disabilities to be trainers," in Cross-Cultural Rehabilitation: An International Perspective, edited by Ronnie Linda Leavitt, W.B. Saunders, July 1999

²⁰Schneider, Estelle, interview, September 13, 1999

²¹Schneider, Estelle, interview, op. cit.

²²Shneider and Segovia, op. cit.

²³Solarzano, Lesbia, "Poverty Has a Woman's Face in Nicaragua," International Leadership Forum for Women with Disabilities:  Final Report, May 1988, p. 125

²⁴People for Awareness on Disability Issues, South Africa, www.independentliving.org/library/international

²⁵Jagoe, Kathy, "The Disability Rights Movement: Its Development in South Africa," Disabled People South Africa, http://www.independentliving.org/ToolsforPower/Tools6.html

²⁶Nkeli, Jerry, "Legislation for Human Rights"  Stockholm, Sweden, 24 August, 1998

²⁷duToit, Mike, "Disabled People South Africa," Rehabilitation in S.A., Dec 1989

²⁸Nkeli, op. cit.

²⁹Jagoe, op. cit.

³⁰Nkeli, op. cit.

³¹Michailakis, Dimitris, Ministry of Social Affairs, "Compliance with UN Standard Rules,"  2 April 1996.

³²Ratzka, Adolf, "STIL, the Stokcholm Cooperative for Independent Living," 1996, http://www.independentliving.org/STIL/STILlongdescription.html#anchorhist

³³Ibid.

³⁴Kern, Jennifer, interview, August 9, 1999

³⁵Adonia, Ayebare, "Leopards can wear pinstripes: Uganda's Museveni builds his own democracy," The WorldPaper

³⁶Report of the United Nations Consultative Expert Group Meeting on International Norms and Standards Relating to Disability

³⁷Kern interview, op. cit.

³⁸Simmons, Pat, "Ally to the Disability Movement," Disability International, Spring 1999

³⁹Kern interview, op. cit.

⁴⁰"0vercoming Obstacles to the Integration of Disabled People," UNESCO sponsored report as a contribution to The World Summit on Social Development, Copenhagen, Denmark, 1995, Disability Awareness in Action

⁴¹Lewis, Cindy and Susan Sygall, ed., Loud, Proud & Passionate: Including Women with Disabilities in International Development Programs, Mobility International USA, 1997

⁴²Action on Disability and Development Newsletter, ADD Uganda, 1998

⁴³Kern, Jenny, "Whirlwind Women Pilot Project: Uganda Update", Portfolio 98, WID/RI

⁴⁴Groce, Nora, The US Role in International Disability Activities: a history and a look towards the future, a study commissioned by the World Institute on Disability, the World Rehabilitation Fund and Rehabilitation International

⁴⁵Shapiro, Joseph, No Pity

⁴⁶Frieden, Lex, telephone interview, August 18, 1999

⁴⁷ Groce, op.cit.

⁴⁸ Frieden, op. cit.

⁴⁹Chelberg, Gene, "Independent Living:  Pros and Cons."  Unpublished paper.

⁵⁰Martinez, Kathy. "Cultural Adaptations of the Independent Living Philosophy: some preliminary observations," Portfolio '96: IDEAS 2000.

⁵¹Dr. Ho Nhu Hai, Ministry of Labor and Invalid and Social Welfare,  "A General Overview of the Disabled in Viet Nam"

⁵²Hanke, Johanne, "Case Studies: Strategies for the Rural Disabled in Cambodia, Lao PDR, Thailand and Vietnam," (FAO, 1998)

⁵³Ho, op cit.

⁵⁴Hanke, op cit.

⁵⁵Hicks, Alastair, Senior Agricultural Engineering and Industry Officer, FAO Regional Office for Asia and the Pacific, "The 'Midas Touch': Food and Agro-Industries for Income Generation by Disabled People"
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