People with disabilities in the struggle for social change

by David Werner, 1992.11.30

In this article David Werner affirms the need for disabled people to have their voices heard in the discussions and decisions that affect them.

I WOULD LIKE to speak to you not so much as an educator, an author, a health-worker, or in the other roles that I am best-known for ... but rather as a disabled person. For we disabled people, like other disadvantaged groups, need a louder voice in the discussions and decisions that affect us.

Recognizing basic needs

The official response to disability - other than trying to prevent disability from happening - is to provide something called ‘rehabilitation’. Although some disabled activists dislike the term rehabilitation, and I appreciate their reservations, I don’t want to throw the baby out with the bath water. For some disabled people, rehabilitation can be important, especially if it helps them to empower themselves, become more independent, and demand their rights.

But we must remember that disabled people - like other human beings - have certain vital needs, some of which clearly come before conventional rehabilitation. I speak of basic needs for survival. In the rich countries of the North, activists in the Independent Living Movement have gained a lot of ground in their demands for both equal rights and accessibility. But, because these disabled activists mostly come from middle-class backgrounds, they take certain things for granted. When they talk about accessibility, usually they mean such things as ramps, elevators, and public transportation.

But for disabled people in the South - as for many non-disabled people - the main accessibility issues are how to access enough food, clean water, decent shelter, and primary health-care. Ramps and lifts for wheelchair accessibility are of low priority for someone who has neither a wheelchair, nor enough to eat.

Such basic needs are becoming more and more difficult to meet for all poor and marginalized people ... including disabled people, most of whom are also poor and marginalized. We disabled people must not look at either our marginalization or our need for rehabilitation - which I prefer to call enablement - as separate from the struggles for enablement of other marginalized groups.

Effective efforts

Given these factors, what kind of ‘rehabilitation efforts’ would be most appropriate? Clearly, ones that enable us. Ones that help us to empower ourselves, so that we can join with other disadvantaged and socially concerned groups, locally and globally, to work towards changing the power structures that deny us our basic rights to meet our needs and potentials.

What kind of rehabilitation efforts now exist in developing countries? A wide spectrum. Current programmes tend to fall between two poles, top down and bottom up: those that try to normalize disabled people, and those that help to liberate them.

Unfortunately, most services for disabled people remain very institutionalized and top-down. Delivered by costly professionals in hospitals or large urban centres, they reach only a tiny portion of those in need. Many of these palatial urban centres are equipped with all the most modern, expensive therapy and rehabilitation equipment, imported from the North. Too often, however, much of the therapy executed on disabled clients tends to be at best ritualistic, and at worst counter-productive.

Even special seating is often thoughtlessly standardized: children of all sizes and disabilities are strapped into oversized chairs that increase, rather than help correct, spasticity and deformity. In some of these institutions you get the feeling that disabled people are lovingly dehumanized, on the assembly line of an elaborate robotics factory.

The need for change

During the last ten years, however, things have begun to change. Forward-looking planners have begun to realize that the needs of the vast majority of disabled people can only be met by de-institutionalizing services, so as to place rehabilitation skills in the people’s hands. There has been a growing effort by national and international agencies - and by a few of the more socially conscious disabled people’s organizations - to reach the countless disabled people whose needs and potentials remain unmet.

The most exciting and potentially revolutionary of these approaches - loosely dubbed community-based rehabilitation (CBR) - attempts to move the focus of re-habilitation from the extravagant ‘rehabilitation palaces’ into under-served communities and homes. In spite of the World Health Organization’s early attempts to rigidly standardize the approach, the term ‘CBR’ covers a wide range of initiatives.

At one end of the spectrum are the large CBR programmes launched by governments. Although these programmes do reach out to many more people, they still tend to be structured from the top down, in ways that normalize rather than empower. Rehabilitation measures usually follow a set of oversimplified, pre-packaged lesson plans. In practice, they tend to be even more ritualistic and ineffective than the large urban rehabilitation centres.

The whole approach is very hierarchical. The district supervisor supervises the local supervisor who supervises the home supervisor who supervises the disabled person, who is definitely ‘low man on the totem pole’. Thus disabled people become the objects, not the subjects, of their rehabilitation. They are trained to jump through hoops and are graded for their performance. We won’t change the world that way!

Inspiring signs

Of course, some good things do happen in these programmes – especially when there is creative leadership that dares to go outside the norms. This sometimes happens when disabled people themselves take the reins and begin to restructure the programme on their terms.

At the opposite end of the CBR spectrum are small community programmes run by disabled people, or by the families of disabled children. These tend to be woefully disorganized and very exciting. Every programme is different. In the best ones, disabled people become peer counsellors and skilled technicians. Some make low-cost wheelchairs, orthopaedic appliances, prosthetics, and a wide range of rehabilitation aids. We have found that the quality of their work - especially the care they take in making sure appliances and therapy really match the needs and wishes of each individual - is often as good as, or superior to, that of many highly trained rehabilitation professionals.

But I don’t want rehabilitation professionals to get me wrong! In CBR the co-operation of competent professionals for both teaching and back-up is essential. Indeed, the lack of adequate professional support and referral is one of the biggest obstacles to successful CBR.

In some of the most outstanding CBR programmes that I have visited, I have observed that exceptional rehabilitation professionals are playing a vital role in the success of these programmes. These professionals tend to be humble but iconoclastic individuals who are willing to go into the community, share their knowledge, and learn from the people as equals.

But even more important to the success of a CBR programme is the leadership of disabled people themselves. I want to emphasize that when given the opportunity, disabled people - even with limited formal education - often make excellent rehabilitation workers ... and community health-workers. We discovered this in Mexico, completely by accident. Let me tell you about it.

Talented leaders

For much of the last 27 years I have worked with villagers in western Mexico. Together we have looked for solutions to health-related needs. A villager-run primary health-care programme, known as Project Piaxtla, gradually evolved. Villages wishing to participate would choose someone from their community to take a six-week training course as a village health-worker.

In the selection of health-workers, a curious thing happened. Some villages chose a disabled person. I don’t think this was because they thought a disabled person would make an especially good health-worker. Rather, they were the people most available. Unable to do hard physical farm-work, and often unmarried because of local taboos, disabled people were among the few people with free time to take the training course.

As the years went by, some of these disabled health-workers proved to be among the most outstanding. This is understandable, for, by becoming health-workers, disabled villagers were able to move from a marginalized to a central and important role in their community. Because of what they had been through themselves, they had more empathy for other disadvantaged people, and tended to reach out to those in greatest need. They also had first-hand knowledge of the problems that marginalized people have to deal with. So, in a way, their being disabled helped to qualify them as ideal health-workers.

In time, some of these disabled health-workers became leaders in the village health programme. They grew concerned that their programme did relatively little specifically for disabled people, especially children. So in 1981 they met with families in the village of Ajoya, and started a programme called PROJIMO: Programme of Rehabilitation Organized by Disabled Youth of Western Mexico.

PROJIMO is run and staffed almost entirely by disabled villagers. Although most have little or no formal schooling, they have achieved recognition for a wide range of skills. These include peer counselling, medical and nursing care as needed, physical and occupational therapy, as well as self-care and skills training. The team makes high-quality low-cost orthopaedic appliances, artificial limbs, wheelchairs, and many other aids and equipment. They have learned most of these skills through hands-on problem-solving apprenticeships during short visits by friendly rehabilitation professionals, many of them disabled themselves.

Collectively, the disabled young people at PROJIMO, as they have gained respect and self-confidence, have begun to assert their rights. They have pressured the local community to build ramps for access into public buildings and stores, and to admit disabled children into the normal school.

There are many reasons why a community-based rehabilitation programme should be run and staffed mostly by local disabled people:

  • Having an impairment themselves, disabled workers tend to be more sensitive to the needs and feelings of other disabled people, and to relate to them more as equals.
  • Because of this sense of equality, disabled workers are more likely to involve those who come for rehabilitation in the problem-solving process.
  • Because of the insight the workers gain from their own disability, the rehabilitation aids and therapy that they provide often meet better the real needs - and the felt needs - of the user.
  • Having disabled people with some formal education as leaders and skilled technicians helps to demystify the rehabilitation process.
  • Disabled leaders and craftspeople provide an important role model to disabled children and their families. They give both the parents and the child a whole new sense of what is possible.
  • Providing hands-on skills training and leadership opportunities to disabled people in the field of rehabilitation and disability rights provides employment in an area where their disability is a valuable qualification, rather than a handicap.

Painful lessons

My conviction that disabled people - including children - should be involved in the planning and decision-making of their own rehabilitation comes from painful personal experience. I have a progressive muscular atrophy. As a child I had very weak feet and ankles, so an orthopaedist prescribed arch supports.

I hated them, since they made it harder for me to walk. They bent my weak ankles outward just enough that I was constantly spraining them. I would take the arch supports out of my shoes and hide them. But my parents would find out, and both they and the orthopaedist would scold me. Later I was prescribed heavy metal braces which, although they protected my ankles, made walking so awkward and tiring that I finally abandoned them.

It was not until many years later, when I began to work with the team of disabled villagers in PROJIMO, that I realized that my disapproval as a child of the arch supports made sense. They did me more harm than good.

Only since I began to work with PROJIMO, and could actually take part in the design and improvement of my own braces, do I now finally have top-quality orthopaedic appliances that really answer my needs. They are plastic ankle-foot orthoses, with unique features adapted specifically to my needs. With these braces I can now walk better than I could 30 years ago, although without them I can barely take a step. They have given me a new degree of freedom and ability.

For this reason I am committed to helping make sure that other disabled people participate as fully as possible in the assessment of their own needs and in the design, innovation, and evaluation of their own therapy and equipment.

It is essential that we disabled people demand, help to design, and take the lead in enablement programmes that do not try to normalize us into an unjust society, but rather empower us to become leaders in the struggle for transformation. Together we must work toward a social order that provides all people, rich and poor, weak and strong, disabled and non-disabled, with equal opportunities, equal rights, and equal respect.

This article is a condensed version of a speech given by David Werner in Bangalore, southern India, in 1993.