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Communication Barriers Between The Worlds Of "Able-bodiedness" And "Disability"

From: Australian Disability Review
Creator: Irving Kenneth Zola (author)
Date: 1988
Publication: Australian Disability Review
Source: Available at selected libraries

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'Why doesn't anyone understand what it's like?' is a lament of many who try to convey to others the nature of having a disability. It is a story rooted deep in Western culture. Slater (1970) put it well:


"Our ideas about institutionalizing the aged, psychotic, retarded and infirm are based on a pattern of thought that we might call The Toilet Assumption -- the notion that unwanted matter, unwanted difficulties, unwanted complexities and obstacles will disappear if they are removed from our immediate field of vision.. . .Our approach to social problems is to decrease their visibility: out of sight, out of mind.. . .The result of our social efforts has been to remove the underlying problems of our society farther and farther from daily experience and daily consciousness, and hence to decrease in the mass of the population, the knowledge, skill, resources, and motivation necessary to deal with them."


It is, however, increasingly less acceptable to exile 'problem' bearers in far-away colonies, asylums, and sanitaria. A recent compromise has been to locate them in places which, if not geographically distant, are socially distant places with unfree access, like ghettos, special housing projects, nursing homes or hospitals. This too is imperfect. So a final strategy makes them socially indistinct. They are stereotyped. But I never fully appreciated the resultant distancing and isolation until it happened to me! I use two canes, wear a long leg brace on my right leg, a knee and ankle brace on my left, a back support, and walk stiff-legged with a pronounced limp. All in all, I think of myself as fairly unusual in appearance and thus easily recognizable. And yet for years I have had the experience of being 'mistaken' for someone else. Usually I was in a new place and a stranger would greet me as Tom, Dick, or Harry. After I explained that I was not he, they would usually apologize saying, 'You look just like him.' Inevitably I would meet this Tom, Dick, or Harry and he would be several inches shorter or taller, forty pounds heavier or lighter, a person using crutches or a wheel-chair. I was continually annoyed and even puzzled how anyone could mistake 'him' for the 'unique me'. What eventually dawned on me was that to many I was 'handicapped' first and foremost. So much so that in the eyes of the 'able-bodied', I and all others like me 'looked alike'.


But more is going on here than the traditional stereotyping of a stigmatized ethnic group. The social invisibility of people with a disability has a more insidious development. Young children care little about skin colour, or Semitic or Oriental features. Only as they grow older are they eventually taught to attend to these. Quite the opposite is true with regard to physical disability. When small children meet a person using a wheelchair or wearing a brace they are curious and pour forth questions like, 'Why are you wearing this? What is it? Do you take it off at night? How high up does it go? Can I touch it?' If, however, there are any adults or parents within hearing they immediately become fidgety and admonish the child.


'It's not nice to ask such things' or 'It's not nice to stare at people who are. . .' The feature in question -- the limp, the cane, the wheel-chair, the brace, the stutter, the scarring -- is quite visible and of great interest to children, but he or she is taught to ignore it. They are not, of course, taught that it is an inconsequential characteristic, but with effect, if not in words, that it is an uncomfortable and all-encompassing one. They are taught to respond globally and not particularistically: to recognize a person with a disability when they see one but to ignore the specific characteristics of the disability. Is it any wonder that a near-universal complaint is, 'Why can't people see me as someone who has a disability rather than someone who is disabled? Young children first perceive it that way but are quickly socialized out of it.


But why all this effort? Why this distancing of those with chronic illness or a disability-?- Why are we so threatening that we must be made socially invisible? The answer is found both in the nature of society and the nature of people.


In many countries in the Western world there is a premise that with great effort and the right technique there is no problem that cannot be solved, no force of nature unharnessed. It should thus be no great surprise that we similarly claim that there is no disease that cannot be cured. And so there is a continual series of wars; against heart disease, cancer, stroke, birth defects, mental illness. They are wars worthy enough in themselves but ones which promise nirvana over the next hill, a society without disease. It is, however, but a mirage (Dubos 1961).


I am not arguing for any cessation in these campaigns to prevent disease and disability. Rather, I am concerned with their side effects. People no longer die. Doctors simply lost the battle to save them. With society so raging against the anthropomorphic killer 'diseases', should it be a surprise that some of the anger at the diseases spills on its bearers? In this context, people with disabilities become objects, the permanent reminders of a lost and losing struggle, the symbol of a past and continuing failure. To see how intolerant we are of failure think for a moment of how we in our respective countries have reacted to Vietnam veterans. Whether we were of the left or of the right, we both wanted to push the events of that era out of our minds and as a result treated the survivers of that war shabbily.

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