Independent Living Institute


Independent Living:
Ideology & definitions

The Disability Rights Movement:
its development in South Africa

by Kathryn Jagoe

The cripple

Disabled people had for centuries been viewed as poor helpless cripples, blind beggars, dumb idiots standing on street corners with contorted outstretched hands groping, and spluttering for the small offerings their pitiable image could entice out of guilt-ridden passersby. They were outcasts, denied the recognition of human beings, denied at every point the rights of participation in their society. Generally they were either cast out of families or hidden behind closed curtains and doors for fear they would bring shame upon and ostracizing the entire family.


From this, a new phase developed - the emergence of the charity/welfare organizations. At this point society's individual guilty consciences came together into organizations which took on the responsibility of "looking after" these indigents, these helpless cripples. It is at this point that the idea of institutions developed to house, "educate" and "employ" these misfits in society. While there is no doubt that a place which offers food, beds, some sort of activity and safety to people who have never had any, is a great advancement, they were nevertheless "dumping grounds" which served to get and keep the problem out of sight. The only reminder society had of their existence was now the more respectable, acceptable member of society "begging" on street corners on their behalf. The tacit agreement: give us money and we'll look after them for you and keep the burden on society in manageable confined institutions. The "able bodied" now became custodians, caretakers of those too horrid, too frightening, too burdensome to contemplate.

Intervention of medicine/professionals

Throughout the centuries wars, poverty and lack of sanitation have not only killed but also maimed people. By the Second World War, medicine was sophisticated enough to keep many of those injured alive, and in some cases, set up rigorous rehabilitation programmes to build on the remaining strengths of these newly disabled people and teach them new, compensatory skills. The responsibility for the lives of disabled people was now being shared by welfare workers, doctors and nurses. Slowly, as specialization developed, other professionals, such as occupational therapists, physiotherapists, psychologists and social workers were added to the group who assumed responsibility for the lives of disabled people. Obviously, persons with disabilities owe a great deal to this team of non-disabled professionals and charity workers. Firstly, for keeping them alive; secondly, for teaching them new skills; and thirdly, for obtaining a certain amount of institutional security. And grateful we are. However, not all that has been done, in the name of caring, has been of benefit to disabled people - or the broader society. Medical and custodial care was mostly seen as short term, as certainly many physically disabled people did not live very long. Blind people seemed to "cope", other disabilities like deafness and epilepsy were invisible enough not to cause concern; and mentally disabled people were easily hidden in institutions. However, two major developments have changed this pattern irrevocably: 1. The advancement of medical technology and 2. The increase of violence.

The late sixties saw a whole generation of post-polio, young adults who had, through the advance of medical technology in the late forties and fifties, been saved from dying. At the same time people returned from wars in the sixties - notably Vietnam and the Israeli Six Day War - with severe injuries often resulting in permanent disability. These were young adults who, all around them, watched the swelling liberation movements of people of color, students, women and gay people. People who were fighting for their rights as equal citizens in society. Their cry for consumer rights, self-help, demedicalization, de-institutionalization, equal accessibility to education, employment and public facilities were all issues that, had particular relevance to people with disabilities who had mostly been excluded from the society in which they belonged.


There exist many stereotypes which have boxed disabled people into neat rather sub-human categories. These stereotypes define people with disabilities as passive, weak, helpless, unable to make decisions or take responsibility for themselves, overly sensitive, asexual etc. The saddest thing about stereotypes is that they have the potential to develop into self-fulfilling prophesies.

The flip side of all negative stereotypes is equally destructive and unrealistic. For very often those people who break out of the box, are then seen as brave, amazing, having superhuman qualities such as a 6th sense. These people are put on pedestals as "examples" to be waved around like toy flags - "supercrips". They are equally unrealistic - and dangerous - as they deny the essential humanity, vulnerability, range of emotions and responses with which we credit average human beings.Most stereotypes emerge from a combination of a personal projection of tragedy and ignorance. How often does one not hear both ends of the continuum in one reaction to a person with a disability: "Oh shame, how dreadful, I couldn't cope in her situation." This reaction distances the able bodied person from someone with a disability, often with an inherent assumption that they can't be "one of us".

As soon as someone is seen as other than "one of us", different standards can then apply. This parallel is clearly seen in the racial stereotypes in this country. Once white people have classified people of color as "different from us" such attitudes and standards easily arise, for e.g.. it doesn't matter that black people are facing a winter living under plastic sheets or in corrugated iron shanties as "they don't feel the cold like we do ." We conveniently sweep aside the fact that 20 or more Black people will be sharing a tiny house which would acceptably house l or 2 white people excusing it as "part of their tribal pattern." On and on until we have laid all the blame on the individual and taken the responsibility away from ourselves and the broader society. People with disabilities, like people of color, women and gay people have begun to say "hang on, those are your projections, your assumptions, your definitions of our inferiority and that these projections are convenient to maintain the power balance firmly on your side."

Coming of age

The late 60's and 70's saw a "coming of age" of people with disabilities across USA, UK, Europe and Scandinavia. Disabled people not only began to unite, but to identify areas in which they were discriminated against and oppressed. They also began to understand the methods of their oppressors. Oppression was often unconscious in the heads of the oppressors, or excused as "being for their own good" - and runs along very similar lines to patronizing colonialism. Once recognizing their oppression disabled people began identifying with other oppressed groups and from them learnt strategies with which to fight it.

It must be pointed out that while we have come a long way, we still have not completely shaken off the view of disabled people as being pitiable outsiders, recipients of welfare and patients in the medical system. Each phase has left its stamp and embedded influences.

There are a number of common characteristics of the medical and the welfare phases. There is the belief that the professional is the "expert", the controller of knowledge and has the power to direct the situation. The disabled person is regarded as the client or patient, an inferior member of the "team" - if a member at all. The latter is considered a passive recipient of whatever service. Not only are disabled people deemed incapable of making decisions about our own lives, but the hierarchical relationship itself perpetuates passivity, ignorance and inhibits participation in every aspect of our lives.

Characteristic of this phase is that the "problem." is perceived to be within the individual and that therefore the focus of expert attention is on changing the individual to fit into society. This phase, in its extreme, does not question the status quo of society. Segregation into special institutions, separate (and often unequal) facilities - such as transport, sheltered workshops, schools and homes are not questioned, but rather the individual is shaped to fit into this divided, Apartheid-like society. The society is satisfied it has now matured enough to provide such facilities, and professionals are unquestionably taught to prepare disabled people for this life.

Disabled people began to realize that the preparation to live a " life apart" was not just an individual matter but common to almost all people with disabilities. They began to recognize that oppression was similar regardless of the disability. And that their strength lay in a united force against a society which discriminated against them because they dared challenge the myth of the "normal healthy body." In fact their challenge has become more conscious and more concerted than this: For equal opportunity and full participation in society.

The liberation movement

In the 70's and 80's people with disabilities around the world have gotten together to identify issues and strategies. One of the most clear cut foundations of the next phase, the liberation movement, is the identification of the difference in the terminology between disability and handicap. (Different countries have slightly different terminology, but the distinction is the same).

Disability refers to what is inherent in the individual and to a large degree unchangeable and static. Handicap refers to the restrictions experienced in society.

These are dynamic barriers which prevent integration. They are most obvious in attitudes, education, environments, transport, employment, relationships and the media and also in the availability of equipment, medical services, information, housing, personal assistance et al. Disabled people internationally are effectively coming together and challenging society, those in authority and professions in the related health care fields: This undoubtedly demands a great deal of change in the relationship between professionals and people with disabilities, changes which have engendered enormous feelings of inadequacy and discomfort in able bodied professionals.

The parallels are easily identifiable in those cries from many white liberals in this country, who equally have staked a claim on: ways of relating, where they live, are educated, work and play holding other standards for those they see as "different". Statements like "but they'll be happier to be with people of their own kind," "they will be protected and have facilities geared especially to them in separate institutions" are constantly heard. Some people have begun to recognize the hollowness and political connotations of such statements when describing racial issues. Few have seen how in the disability field they are also serving the needs of the dominant group - under the insidious cloak of supposed "caring".

The South African Disability Rights Movement (DRM)

The development

In 1981 we saw the foundations of the South African Disability Rights Movement/Independent Living Movement (DRM/ILM) being laid. It was designated by the United Nations as International Year of Disabled Persons (IYDP). While the South African Government chose not to recognize this year, individual communities in South Africa formed coordinating committees to work on disability issues. The composition of these groups varied in different areas, but a striking aspect of some was that disabled people were represented and were sometimes even in the majority - taking leadership roles.

We had learnt an important lesson in watching the international scene a year previously. Disabled people from around the world demanded a 50/50 partnership of the professional/welfare dominated organization Rehabilitation International (RI), or, a total split. They were not granted the equal partnership - professionals were still threatened by having to take their patients/clients opinions seriously - so disabled people broke away and formed their own organization - Disabled Peoples' International (DPI).

Gaining strength

Welfare, in splitting us off into different disabilities - supposedly to deal more effectively with specific problems - had in fact weakened us by denying our common barriers. We grew, excitedly, to realize that, regardless of whether we were blind or used a wheelchair, our strongest handicap was society's view of us, that because we were different from the so-called norm, we were inferior. Our only way of effectively challenging this and changing our destiny was a united front. This was one of our most dynamic and energizing experiences in South Africa at that time.

Through the next few years self-help groups emerged around the country. These sometimes emerged as a result of ineffective professional services, sometimes because stereotypes were simply non existent and only occasionally with the blessing and encouragement of professionals. By 1984 we had formed a national organization, Disabled People South Africa (DPSA). This is primarily a coalition of self-help groups, but also a way of linking up individual people with disabilities.

The composition of DPSA is strictly across disabilities, races and ages. lt remains outside of party-politics, and has at any one time included a range of attitudes from anti-white attitudes to very conservative whites. It is interesting to observe that in national conventions it is for some people the first time they have sat next to and communicated - as equals - with both people of a different race and a different disability. Like the DRM worldwide, DPSA is challenging the barriers which prevent us from participating on an equal basis in a society. This includes a challenge to welfare and health-care professionals. In other countries much of the challenge has been reinforced with legislation. This anti-discrimination legislation is based on the recognition of human rights.

A question which obviously confronts the DRM in South Africa is how do we legally confront discrimination against us as disabled people in a country which does not recognize the equal rights of all people. How do you fight for an improvement in the very inadequate disability grants - which for whites is over R200 per month, when for coloreds and Asians it is half of that; and for black people it is half again. And this, for anyone who has an income, will immediately lose.

We have additional problems in South Africa: extreme overcrowding of black hospitals, insufficient training in basic nursing techniques related to long term disabilities, the inappropriateness of knowledge and experience of White therapists taught in "white" medical schools working in "black" hospitals, and the environment of the majority of black people. For example, of what 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. But how many white therapists have intimate knowledge of that community? We are separated, by color, from the time we are born, yet they are supposed to teach their "patients" useful skills. Nothing is untouched by Apartheid.

The most widely accepted requirements to keep a spinal cord injured (SCI) person alive is the combination of knowledge, a high level of sanitation, the right equipment and the motivation to live. How do we expect black SCI people to cope when most of the medical staff don't speak their language, have too many people to treat so time for careful interpretation is often non-existent -and we then return the person (even if we have given them a state-provided wheelchair and cushion) to an environment too small for a wheelchair to manoeuvre in and in which one tap is shared by a whole street with no prospect of employment. Many SCI people recognize that re-employment will rely on education qualifications that are higher than those of others and a tendency towards managerial and sedentary work. The majority of black SCI people have little education and were often manual laborers.


The medical profession has long recognized that many diseases are directly related to poor sanitation, overcrowding, undernourishment and compounded by inadequate education. Many of these diseases result in long term disability, viz polio, TB, tracoma and leprosy, rheumatic heart disease and meningitis. It is acknowledged by many that these types of disability are far more prevalent in 3rd World countries. While some, like polio, have been almost stamped out in developed countries like USA, UK and Scandinavia.

It has to be pointed out that while we don't find a high incidence of the disabilities related to poverty in "white" South Africa, they are still extremely prevalent in "black" South Africa. For instance, there were 150 known cases of polio in Letaba, Gazankula in 1982, with more recent outbreaks in Alexander and the Transkei this year - the two former being rural homelands, the latter, Alexander, an urban " location" - both used as dumping grounds to keep "black" people out of "white" South Africa and "white" Johannesburg respectively.


A further aspect of our South African society is the prevalence of violence in "black" communities. At "normal" non-unrest times we look at the difference in causes of injury in "white" compared with "black" communities. The majority of "white" people will sustain injuries in motor vehicle accidents or sport. In people of other colors the major cause is violence: stabbing and gun shot - many of these by "trigger happy" police.

How then does this picture change in an unrest situation? From 1976 onwards, we have been fed the cold, frightening figures of those detained, killed and those known to be injured. Seldom have we publicly been made aware that, of those injured, some will be disabled for the rest of their lives. From the '76 Soweto riots we know that children lost limbs from bones being shattered or bullets going septic. Others were paralyzed through being shot in the back while running away.

In the last few years, increasingly we know of people being spinal injured (even with bullets going through as high up as the neck), blinded by birdshot, brain injured from bullets through the skull and even now suffering permanent hearing loss through torture. To what do we have to return these people? Overcrowding, bad sanitation, appalling roads, few community resources, little education, less employment. While professional-patient relationships still leave a great deal to be desired, the problems are far greater than this, they are within the structure of the political system. There are individuals who are health care professionals who are enormously caring, and who have begun to recognize the value of working with those of us in the DRM. But they alone cannot solve the problems, we need a concomitant change in the political structure.

An often asked question in South Africa is how politicized are people disabled by violence - even "domestic" violence. Politicized they are, that there is little doubt. But around what issues will they devote their energies? First and foremost, it seems disability issues. This is not a cop-out of broader political issues but must be seen in a realistic context. If Apartheid has said black people can't get onto "white" busses, live in "white" suburbs, get "white" jobs and are limited in relationships, disability has meant they can get on no busses, lose almost all prospects of employment and often lose houses and families and, as long as health care and sanitation is inadequate, they will continually be dogged by health problems. They will also now live with a constant mobility, media, education, relationships, housing and transport handicap because of their disability. In order to get back into the "normal" struggle of black life, they first have to break down disability related discrimination.


All over the world traditional welfare and health professionals alone have been totally unable to substantially diminish handicaps faced by people with disabilities. It is only when disabled people themselves have taken responsibility into their own hands that we have seen a noticeable change. The particular handicaps the majority of disabled people in South Africa face are inextricably linked with Apartheid. Therefore in challenging and dismantling these handicaps we also need to do the same to Apartheid. However there is no point in waiting for post-Apartheid society, we need to change attitudes and break down barriers now both for the existing disabled people, but also for all those who will become disabled.

Source: Disabled People South Africa, P.O.Box 662, 5256 Gonuble, Republic of South Africa
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