Independent Living Institute


The Role of Organizations of Disabled People:
A Disabled Peoples' International Discussion Paper

by Henry Enns

A. Introduction

In the last ten years disabled people have organized themselves into their own organizations in 100 countries. Disabled people's organizations are those controlled by a majority (51%) at the board and membership levels. Disabled Peoples' International (DPI) considers the role of organizations of disabled people to be the most fundamental issue for the disabled person's movement. The World Programme of Action Concerning Disabled Persons concurs in paragraph 28:

The role of these organizations includes providing a voice of their own, identifying needs, expressing views on priorities, evaluating services and advocating change and public awareness. As a vehicle of self development, these organizations provide the opportunity to develop skills in the negotiation process, organizational abilities, mutual support, information sharing and often vocational skills and opportunities. In view of their vital importance in the process of participation, it is imperative that their development be encouraged. (WPA, p. 8)

This paragraph outlines the role of organizations of disabled people, which will be discussed in this paper. First, however, as a background, it is important to define disabled peoples' organizations, to describe the worldwide situation of people with disabilities, and to discuss the evolution of key philosophical tenets of the disabled people's movement.


B. The situation of disabled people

1. Scope of disability

The World Program of Action states that:

"More than 500 million people in the world are disabled as a consequence of mental, physical or sensory impairment. These persons are entitled to the same rights as all other human beings and to equal opportunities. Too often their lives are handicapped by physical and social barriers in society which hamper their full participation. Because of this, millions of children and adults in all parts of the world often face a life that is segregated and debased." (WPA, p. 1)
It is estimated that one person out of ten is disabled by physical or mental or sensory impairment, and at least 25% of any population is adversely affected by disability. At least 350 million disabled persons are living in areas where they do not receive the services needed to enable them to overcome their limitations. (WPA, p 11)

Disabled people in the developing world often face more acute barriers than those in developed nations. Up to 80% of disabled persons live in isolated rural areas in the developing world. In some countries 20% of the population are disabled. Thus, it can be estimated that, when disabled people's relatives are included, 50% of the population is affected by disability. In addition, disabled people are the poorest of the poor. They often do not have access to adequate medical services. As a result disabilities are often not detected in time to minimize disability affects. By the time they receive medical attention, if at all, impairment may have become irreversible. (WPA, pp. 13-14)

In addition, the number of elderly people is rising around the world. Thus, disabling conditions, that are not common to younger people, such as strokes, heart disease and deteriorating vision or hearing, are becoming more prevalent. (WPA, p. 14)

Another disabling factor is war and violence. The arms race costs 600 billion dollars a year or one million dollars a minute. These funds could be used towards socially useful programs to prevent disability and provide services. In addition war causes countless other physical and psychological disabilities.

On a larger scale the economic structure of society may be decimated by war leading to malnutrition, housing, sanitation and other problems -- all increasing the risk of acquiring or compounding the problems of disability. (Heath, 1984, p. 4)

Disabled women face a situation of double jeopardy. They are both disabled and women. They are handicapped by both situations:
"There are a great many countries where women are subjected to social, cultural and economic disadvantages which impede their access to, for example. health care, education, vocational training and employment. If, in addition, they are physically or mentally disabled their chances of overcoming their disablement are diminished, which makes it all the more difficult for them to take part in community life." (WPA, p. 14)
For example, a woman with a disability is often not considered "marriageable" by a family. They often cannot fulfill the usual role as a worker in the field and home. In the case of children, impairments often lead to their rejection and isolation for experiences that so-called normal children experience. This may be exacerbated by community and family attitudes that disabled children are abnormal, and cannot participate like everyone else. This has an affect on children's self-image development.

There are, in addition, over 100 million disabled refugees in the world. Many of them have been disabled physically or psychologically by their persecution. Most of these refugees live in the developing world, where services are limited. Being a disabled refugee is a double handicap.

2. Societal Attitudes

Add to the foregoing situation the perception of society that disabled people are sick, and helpless and in need of being taken care of, and one has a situation that is indeed deplorable. As Jim Derksen states:
"The individual who becomes permanently physically disabled today find himself in a bewildering world, a new and different world. A world where he is no longer responsible for his family, for his personal financial needs, for his behaviour, for most of the things he had been responsible for as an adult person in society. Gone with these is his right to expect equal social acceptance as a responsible adult human person. The right of political and economic involvement in society; the right of access to public buildings and programs; the right to equal access to private services and facilities; the right to travel freely; the right to choose his employment and associations; the right to sexual expression and so on. All are gone, or at least diminished." (Derksen, 1980, p.1)
The situation is buttressed by societal attitudes that reinforce the passivity and dependence of disabled people. These attitudes can be classified in two different ways. The first, the "medical model", is more often found in developed countries, and the second, religious factors, are more prevalent in developing countries.

a) The medical model

This point of view is that people with disabilities are sick patients who need to spend their lives trying to get well. This "sick role" deprives disabled people of the responsibilities of so-called normal people in society. As Jim Derksen, a Canadian, relates:
"This [sick role] relieves him of all responsibilities but regaining his health. The 'patient' or 'sick' disabled person is allowed and even expected to behave in a childlike manner. Like a child, however, he must follow orders; in this case the orders of doctors and the agents or proxies of doctors. Full participation in social, sexual, political, economic and other forms of adult behaviours are denied or at the very least discouraged on the 'patient'." (Derksen, 1980, p.5)
The medical model became more entrenched in the post-World War II world. In the developed nations the rehabilitation professions arose in response to the disabled veterans of World War II. As a result of medical advances, more and more young people with post-polio disablement, spinal cord injuries and other disabilities began to live longer. Improved technical aids, such as electric wheelchairs and portable respirators meant that people with disabilities could move around more independently. Young disabled people had their whole lives in front of them. They began to want to live in the community like everyone else. This did not coincide with the prevailing medical model upheld by doctors, social workers and rehabilitation experts, that disabled people should spend their lives getting better.

b) Religious Factors

In many developing countries religious practices impact on society's attitudes about disabled persons. These attitudes have tended to limit the role that disabled people could play in society. In the Hindu and Shinto religions of Asia, disabled people are seen to be disabled because of some sin committed in the past, or due to a sin committed by the family. As a consequence, many disabled people beg, as it is expected of them.

Dropping coins into the blind beggar's bowl may lead to avoidance of punishment in the after life. Disabled beggars in Asia do not hesitate to remind the public of this possibility, nor do they thank the donor since they are aware that the interaction is merely to acquire credit. Begging is seen as the rightful duty of the disabled person. If a family has a disabled child they see it as their duty to exploit the disability for financial gain. (Miles, 1983, p. 27)

These attitudes limit the role people with disabilities can play in society.


C. The Growth of Organizations

Ultimately, disabled people began to form their own organizations to represent themselves. They revised society's definitions of them as "sick" and as being punished by God. They redefined themselves as citizens with rights -- the same rights as all other human beings -- to medical and social services, education, transportation, employment, housing and family life. The first organizations of disabled people were blind uni-disability groups, and some deaf groups, and then multi-disability organizations were formed in many countries. The organizing process began in the 1950's in some countries. By 1980 there were at least uni-disability organizations in some 50 countries. (Driedger, 1987)

Uni-disability, international organizations such as the International Federation of the Blind and the World Federation of the Deaf, were founded in the 1950's and 1960's. By 1980, a multi-disability international organization was conceived in Winnipeg -- Disabled Peoples' International. Since 1980, particularly through DPI's Leadership Training Program, new multi-disability local and national organizations have sprung up in an additional 50 countries.

The philosophy of these organizations is one of "self-representation" and a "rights" orientation. They also believe that all disabilities united into one organization provides a stronger voice for change than each disability group speaking out separately. What, then, is the role of organizations of disabled people?


D. The role of organization of disabled people

1. Self-representation - "A voice of our own"

Disabled people's organizations believe that people with disabilities are their own best spokespersons. DPI's motto is this, "A voice of our own". This premise is the backbone of the movement. For too long, medical and social work professionals, and extended families, have spoken for people with disabilities. In the words of Ed Roberts, a disabled American, "...when others speak for you, you lose." (Roberts, 1983, p. 7)

Disabled people believe that they best know the needs and aspirations of disabled people. They will represent themselves to governments, service providers, the United Nations and the public. As mentioned earlier, people with disabilities redefined themselves as citizens with rights, not as patients and clients of professionals, nor as beggars asking for hand-outs. As the National Council of Disabled Persons of Zimbabwe (NCDPZ) believes, "Our role is to act as a voice of the disabled. We are a 'civil rights' organization of the disabled formed to conscientize the disabled about their rights and to fight for the right to access to all community services". (NCPDZ "A Voice", 1983, p. 1)

To assert their rights, disabled people believe that all disability groups must be united into national disabled people's organizations, and of course, DPI, an international united front. As Jim Derksen urged disabled Canadians in 1975:

"Let us reason together, let us deliberate on our problems and needs, let us consider our abilities, and when we have agreed on the problems and solutions let us articulate our opinions and ideas in a strong and united voice." (Derksen, 1975, p.1a)
2. Identifying grassroots needs

Organizations of disabled people arise in response to a group of people's perception that there are barriers to participation for disabled people in society that need to be addressed. These organizations are based on the needs and aspirations developed by the disabled grassroots community. The disabled people who start such organizations are usually educated and are better off financially than the majority of disabled persons in their countries. Their educational advantage causes these disabled persons to identify and analyze the barriers that bar the participation of people with disabilities in society. They have learned the tools that the rest of society uses and they turn them towards the benefit of all disabled people, who are in some developing countries, 99% illiterate. Furthermore it is disabled people who must identify their own needs and how to meet them. Paulo Freire explains in Pedagogy of the Oppressed:
"... those who recognize, or begin to recognize themselves as oppressed must be among the developers of the pedagogy. No pedagogy that is truly liberating can remain distant from the oppressed by treating them as unfortunates and by presenting for their emulation models from among the oppressors. The oppressed must be their own example in the struggle for their redemption." (Freire, 1970, p. 39)
Indeed, disabled people in their organizations identify the forces that oppress them, and organize to overcome those forces -- physical and attitudinal barriers.

Disabled persons' organizations around the world have forged mechanisms to hear from the grassroots disabled constituency. There are three ways this can be accomplished.

a) Organizing local chapters

DPI's members have made it a priority to establish local chapters of their organizations throughout their countries. This is important, not only to build the infrastructures of their organizations, but to solicit and represent the views of all people with disabilities in a country. In countries such as Argentina the disabled people's organization realizes that it must reach out into the rural areas beyond Buenos Aires to help disabled people organize. Through outreach the needs and aspirations of rural people with disabilities are learned.

In Zimbabwe the National Council of Disabled Persons (NCDPZ) started a rural outreach program in 1984. It sends development workers into rural areas to locate people with disabilities. They meet with local chiefs and village leaders to discuss the need to locate and to integrate disabled people into everyday life. In the process of organizing local chapters disabled people previously hidden away in the community are discovered and so are their needs and aspirations:
"Rural members usually meet in small groups or cells which form part of the branch. Members try to locate disabled people in their villages and introduce them as new members. They inform their branch secretaries of children or adults in need of treatment and education. Sometimes a branch is able to refer these cases to suitable hospitals or schools themselves; if they are unable to do this they request help from the headquarters office of NCDPZ." (NCDPZ, ca. 1984, p. 2)
b) Open forums

Disabled people's organizations also hold open forums to discuss issues of concern to disabled persons. Over the last ten years the Coalition of Provincial Organizations of the Handicapped (COPOH) in Canada has held six forums on various issues. Some 100 disabled people have attended each forum along with government officials, business people and members of the community. The forums have dealt with barriers to disabled persons' participation in employment, transportation, rehabilitation and independent living. (Driedger, 1986, pp. 9-10)

The forums help disabled Canadians to identify the barriers to their participation in each area and formulate strategies for changes. For example:

The first forum held in Winnipeg in 1978 focused on employment. Disabled people affirmed that employment was a right of every citizen in society. And disabled people agreed that working in the community with all other citizens was the best option for them. (Driedger, 1986, p. 9)

c) Democratic representation

Both the forums and outreach activities of organizations of disabled persons provide direct input from grassroots disabled people. Democratic representation also provides another kind of input which is more indirect. Organizations of disabled people, by definition, are controlled at the board and decision-making levels by disabled persons. People are elected to the decision-making bodies of organizations by their membership. Thus, the disabled people elected to the disabled persons organizations' boards represent those people's concerns to governments, service providers and the public. Frank Bowe, an American disabled advocate explains the process of representation:
"Before I can represent a group of people, I must first consult with them. This process involves sharing with these people my knowledge or expectation that certain issues among the many which concern these people are likely to become subject to public debate in the near future. I must solicit from these individuals informed opinions on these issues and receive from them instructions to represent these views. These instructions constitute my authority as a representative." (Bowe, 1980, pp. 13-14)
As a genuine representative, he or she then returns to report to the group, "In order to complete my work as a genuine representative, I must then return to my group and represent to these people the views, decisions and other deliberations of the people with whom I met on the groups behalf." (Bowe, 1980, p. 14) This is how the system of representation would ideally work. Indeed, the views of the group are represented by individuals to other bodies. DPI is the international manifestation of such a representative system.

3. Representations to government service providers, and U.N. bodies

Organizations of disabled people fulfill the role of a vehicle to represent the needs of disabled people to decision-makers and service-providers at the local, national and international levels. Their representatives make presentations to decision-makers. In the case of DPI its members are multi­disability organizations of disabled people, and thus decision-makers can hear a united voice. In the past, in many countries, before the advent of multi-disability groups, many uni-disability groups would present their varying points of view without consulting other groups of people with disabilities. Government found it difficult to know which group to give priority to in the consultation process. As O'Rourke of the American Coalition of Citizens with Disabilities (ACCD) stated:
"For a long time was a big problem with disabled groups in America because when the legislation was brought before the Congress, perhaps forty different groups would go to Congress. Each had a different position.. It became very difficult for the people within the government themselves to make decisions." (O'Rourke, 1978, p. 51)
The American disabled citizens formed a multi-disability coalition to surmount this problem.

Forrester, of the Combined Disabilities Association in Jamaica reiterates the important role of organizations in the consultation process:
"It is more convenient and advantageous to make representatives to government concerning change or to lobby political leaders as associations, since politicians are more liable too act where they perceive that proposals are being made by associations rather than individuals". (Forrester, 1985, p. 7)
Indeed, government planners can discover what the majority of disabled people want. Too often priorities are set in social services that have little to do with the actual needs of disabled people. It, thus, is good economic and policy planning to include disabled persons in the planning process because they are the ones that best know the needs of disabled people:
"Most frequently in the past, programs, even in America, were designed by people who themselves were not very close to the problem. Disabled people themselves often know how to deal with situations when people who are not disabled need to think about how this problem should be handled. This thought itself is still only theory because they are not disabled themselves, and lacking experience they have difficulty coming up with simple solutions." (O'Rourke, 1978, p. 50)

4. Evaluating and monitoring services

Since disabled people themselves best know their own needs, organizations of disabled people play a role in evaluating and monitoring services. This process would perhaps take place more often in developed countries, where there were more services, than in developing countries. It would also happen more often in countries where there was an expectation from their citizens that their social needs should be served by government as a right. This attitude appears in countries such as Canada and Sweden where their social welfare states provide subsidized medical care and technical aids. The monitoring of services takes place in Sweden through HCK, its multi-disability organization. In Canada, the Coalition of Provincial Organizations of the Handicapped (COPOH), as its first lobbying effort, worked to obtain accessible public transit services for disabled people in 1975. (Driedger, 1983, pp. 9-12) The group perceived that there was a need for disabled people to have the same right to affordable, public transit as other citizens:

"The City of Winnipeg now provides a public transportation system, available to all non-handicapped persons who wish to use it during hours of operation. It is therefore an established city policy: a) to make public means of transportation available; and, b) to charge only a minimal fare to the user." (Jim Derksen quoted in Driedger, 1983, p. 10)

5. Self-development

Organizations of disabled people play a role in the development of disabled people's skills in the negotiation process, organization, management, and proposal and letter-writing. They also provide a forum for mutual support, while the above skills are being developed.

Organizations give disabled people the opportunity, through being volunteer committee members or salaried employees, to learn skills which would benefit them in the open employment market. Indeed, much of the skills training has taken place in local and national organizations where disabled people learned new skills because they had to do those things at the time to further the aims of their organization. There was no one else to take on these jobs, especially when groups started out with few monetary resources.

The skills development of disabled people in the developing world is one of DPI's main arms. DPI established a Self-Help Leadership Training Program in 1982 for this purpose. DPI has raised monies from agencies such as the Canadian International Development Agency and the UN Trust Fund to help fund these seminars. Since 1982, DPI training seminars have been held in Africa, Asia, Latin America and the Caribbean. These week-long seminars deal with budgetting, management, fund-raising, writing letters, project proposals and reports, and establishing local self-help businesses.

Similar seminars are taking place in some developed countries on the initiative of local and national organizations of disabled people. In June 1987 the Saskatchewan Voice of the Handicapped, a provincial member of COPOH, hosted a seminar focussing on leadership training.


6. Mutual support and solidarity

Organizations of disabled people, at all levels, are a vehicle for mutual support and solidarity. Disabled people who belong to these groups find that they have a common purpose, that of promoting their right to live as citizens in society. This common purpose engenders feelings of mutual support and solidarity in a common cause. Indeed, the DPI Development Program Evaluation discovered that disabled people, who were given the opportunity to meet and discuss issues of concern with each other experienced this:

Seminar participants:

The seminars and membership meetings of local, national and international organizations indeed bolster the feelings of solidarity in disabled people, as participants in the DPI Asia/Pacific Regional Convention in 1984 felt:
It helped create power for people.
Knowing that you are not on your own is a very empowering bit of knowledge. It gives you a strange sense of security and the will to create change.
It was a wonderful experience for me. I felt I was part of the majority and normal again, not just a "poor thing" in a wheelchair. (Heath, 1984, p. 20)
Also, as Alan Simpson of the Canadian Coalition of Provincial Organizations of the Handicapped (COPOH) reiterates:
"... the local consumer group is a fellowship -- a chance to enjoy common activities, concerns and frustrations. This group often evolves into a combination of social-recreation programs and periodic social-action thrusts to meet various personal needs..." (Simpson, 1980, p. 4)

7. Vehicle for self-help projects

Disabled people's organizations play the role of initiators of self-help projects aimed at integrating disabled people into the mainstream of society. The projects have been initiated in two main areas: independent living and employment.

In the U.S., Canada and the United Kingdom organizations have investigated the need for independent living of disabled people in the community like everyone else. Organizations controlled by disabled people, called independent living centres, have arisen to ensure that disabled people live as independently as possible. In some cases, as in the United Kingdom, the development of these centres is spearheaded by multi-disability organizations of disabled people at the local level. The centres were needed to fill gaps in services that disabled people identified. They needed to live independently in the community: "They [independent living centres] are needed because they are a practical and imaginative way of correcting the historical omission of disabled people in the past, and to ensure that future service developments correspond to disabled peoples' legitimate aspirations". (Davis, 1983, p. 4) Indeed, independent living centres which are controlled at the board level and managed by disabled people can identify what are the real needs of disabled people.

The first centre was initiated in Berkeley, California in the early 1970's:

After graduating some disabled students realized that once they left the university they would no longer have access to the services they depended upon in order to live in the community. They required such services as attendant care and accessible transportation. To solve this problem, they organized cooperatively to guarantee the provision of the services they required. (Driedger and D'Aubin, 1985, p. 51)

This center, and others in the U.S. and Canada, were established by groups of individuals who saw that their needs were not met by existing service agencies. These centers, depending on the local situations, provide accessible housing with attendant care, advocacy, peer counselling and information on existing services.

Many disabled people's organizations, mostly in the developing countries, have also initiated self-help employment projects. These businesses have proven immensely successful in terms of job skills training for disabled people, demonstrating that disabled people can work as efficiently as nondisabled people, providing a living for disabled people, and in making a profit, which is often used to fund the self-help organization.

All of the above elements are present in DEEDS Industries run by the Combined Disabilities Association in Kingston, Jamaica. This is a factory which employs 50% disabled workers and 50% nondisabled workers. Thus, it is not a sheltered workshop. The Board of Directors consists of disabled people and nondisabled business people. The factory produces wooden toys and gift items, which it markets in the U.S. and other places. It has proven to be a successful business venture which is reflected in the quality of the products and its economic viability. Profits go towards financing the projects of the Combined Disabilities Association. (Forrester, 1985, p. 7)

In Guyana, the Coalition of Citizens with Disability have embarked on a chicken hatchery cooperative project. Again, disabled people are employed in this venture.

In Mauritania, disabled people learn sewing, embroidery, secretarial skills and rug-making in training centres. These centres also market the products, thus providing a living for the disabled people at the centres.


8. Networking mechanisms

Organizations provide the opportunity for disabled people to share ideas and information, especially at the international level. DPI has played an important role in facilitating information-sharing among organizations of disabled people from different countries. DPI's Leadership Training Seminars and regional meetings of World Congresses provide forums for formal an informal information exchange. For example, delegates from the organization in Guyana attended a Training Seminar in Barbados in 1983 and returned home inspired to create a multi-disability organization in their country. After Guyanese delegates attended another DPI Leadership Training Seminar in Barbados in 1985, they returned home to start a chicken hatchery cooperative run by disabled people. They had heard of the projects that other disabled people were starting in the Caribbean; they saw that disabled people's businesses were both possible and successful enterprises.

DPI's Regional Development Officers in South America, Central America, and the Caribbean have also served as networking vehicles. For example, the Regional Development Officer for the Caribbean, Derrick Palmer, has travelled extensively in that area providing information and tools on how the disabled people can organize more effectively for social change. In some countries the Regional Development Officers have met with representatives of the disabled people's organizations and government officials. This has served to lend credibility to local groups, as DPI backing adds credibility to fledgling groups; DPI has consultative status with UN/ECOSOC and other international agencies. Thus, DPI through its Regional Development Officers provides an information tool for groups, which also lends them added credibility with governments.


9. Promoting Public Awareness

Organizations of disabled people also create public awareness about the needs, aspirations and abilities of people with disabilities. This awareness is promoted through many of the activities of disabled people's organizations: lobbying government, monitoring service agencies, publishing a newsletter, speaking in the national media, conferences, etc. For example, the Council of Disabled Persons in Zimbabwe promotes awareness about the needs and abilities of disabled people and the need for their integration into community through its Outreach Program as described earlier. Village leaders are sensitized to begin to look at including disabled people in community life. Many organizations undertake specific "public awareness" campaigns which are usually carried out in the media (radio, newspapers, television) or in the schools with children. Organizations often operate speakers' bureaus which send disabled people out to speak at community events. Others have school programs, which promote awareness. In Canada, the Manitoba League of the Physically Handicapped in conjunction with the Mennonite Central Committee, ran such a program. Disabled people spoke to school children about disabled people's issues. The premise behind such a program is that children will be exposed to a disabled person and hear that person's point of view. Many children do not have this opportunity when they are young. Children's attitudes about disabled people often have not had the chance to become as negative as those of adults, who may often view disabled people as "sick", "helpless", and "childlike".


E. Conclusion

Disabled people's organizations play many roles at the local, national and international levels for disabled people, governments, service providers and the general public. In many cases, the organizations of disabled people are the best vehicle to carry out the aspirations of people with disabilities. After all, disabled people, from their own personal experiences best know their needs, aspirations and abilities. One of the main themes of the World Programme of Action is the importance of Organizations of Disabled Persons. It calls upon governments to encourage their development and utilize their expertise.



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