In the last 10 years, disabled people have organised themselves into their own organsations in 100 countries. Disabled people’s organisations are those controlled by a majority (51 per cent) at the board and membership levels.
Disabled Peoples International (DPI) considers the role of organisations of disabled people to be the most fundamental issue for the disabled person’s movement and the World Programme of Action Concerning Disabled Persons concurs with this principle.
The role of these organisations 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 organisations provide the opportunity to develop skills in the negotiation process, organisational 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.
This paragraph outlines the role of organisations of disabled people, which will be discussed in this article. First, however, as a background, it is important to define disabled people’s organisations, to describe the worldwide situation of people with disabilities, and to discuss the evolution of key philosophical tenets of the disabled people’s movement.
Scope of disability according to the World Programme 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.
It is estimated that one person out of ten is disabled by physical or mental or sensory impairment, and at least 25 per cent 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.
Disabled people in the developing world often face more acute barriers than those in developed nations. Up to 80 per cent of disabled persons live in isolated rural areas in the developing world.
In some countries 20 per cent of the population is disabled. Thus, it can be estimated that, when disabled people’s relatives are included, 50 per cent 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 minimise disability affects. By the time they receive medical attention, if at all, impairment may have become irreversible.
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.
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 programmes 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. 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 is diminished, which makes it all the more difficult for them to take part in community life.
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 effect on children’s self-image development.
There are, in addition, more than 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.
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 programmes; 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.”
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.
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.
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 younger 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.
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 afterlife. 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. These attitudes limit the role people with disabilities can play in society.
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 organisations of disabled people were blind union-disability groups, and some deaf groups, and then multi-disability organisations were formed in many countries. The organising process began in the 1950’s in some countries. By 1980 there were at least uni-disability organisations in some 50 countries.
Uni-disability, international organisations 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 organisation was conceived in Winnipeg — Disabled Peoples’ International. Since 1980, particularly through DPI’s Leadership Training Programme, new multi-disability local and national organisations have sprung up in an additional 50 countries.
The philosophy of these organisations is one of “self-representation” and a “rights” orientation. They also believe that all disabilities united into one organisation provide a stronger voice for change than each disability group speaking out separately. What, then, is the role of organisations of disabled people?
Self-representation – “A voice of our own” Disabled people’s organisations 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
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.
For your letters please send to us on P.O. BOX 34490 Lusaka, Zambia or use our South African Address. The author is Regional Disability policy Analyst for SADC and Inclusive Development Advisor for Centre for Disability Development Research, Law and Policy, Johannesburg.
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