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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.

Finally, the discomforting confrontation of the 'able-bodied' with the 'disabled' is not just a symbolic one. For there is a hidden truth to the statement often heard when such a meeting occurs, the shudder and occasional sigh, 'I'm glad it's not me'. But the relief is often followed by guilt for ever thinking such a thought; a guilt one would just as soon also not deal with. Thus, the threat to be removed lies not merely in society's failure but in the inevitability of one's own. The discomfort that many feel in the presence of those who are ageing, dying, or have a disability, is the reality that it could just as well be they and some day it will. For, like it or not, we will all one day get to grow old and to die.

And in this high-technology world this means dying not of natural causes and old age but of some chronic disease. But this is a reality we never tire of denying.

All this then is the baggage that we, with a disability, carry with us in our daily interactions.

The story of having a disability or illness is difficult to tell as well as to hear. There is thus a complementary question to the one with which I opened this talk: 'Why can't I make anyone understand what it's like to have a disability?' To me, the different emphasis implies that the spokesperson may be at a loss 'to tell it like it is'. Part of the problem may lie in the vantage point of the speakers. Erving Goffman (1963) once noted that 'minority' group spokespersons may occupy that position precisely because they are successful adapters and thus in many ways closer to the 'normals'. Yet to that extent, they are ironically less representative of the group they are supposed to represent. For instance, I and many other 'successful mainstream adapters' have not numbered among our close friends and acquaintances any people with disabilities: an 'alienation' from our disability which has escalated almost to the level of an unconscious principle. Moreover, almost every written 'success' story as well as every 'success' I have met (including myself) usually regards, as a key element, the self-conception: 'I never think of myself as handicapped'. Yet the degree to which this is true may have made it virtually impossible to tell anyone what it is like to have a disability in a world of 'able-bodied'. In a real sense, we don't know. Thus, what the public learns from our example is decidedly limited.

Franklin Delano Roosevelt is a case in point. To the world in general and to people with disabilities in particular he was the ultimate of successful adaptation. For after contracting polio and left 'functionally paraplegic' he went on to become President of the United States. What better evidence of success? And yet the newer biographies reveal a man not so pleasant an individual, not so happy with his lot, and possessed of certain drives and needs that for another person less famous might have been labelled clinically pathologic. Moreover, whatever his political achievements, his social success was a more limited one. The public knew that he had polio, used a wheelchair regularly and crutches rarely, but he was careful never to 'confront' the public. He never allowed himself to be photographed in a wheelchair or on crutches. He passed photogenically. But few of us can so control, manipulate and overcome our environment. So too with the other folk heroes of disease. They are not little people, not the millions, but the few who are so successful that they also 'passed'; the person with polio who later broke track records, the pianist who had limited vision, the singer who had a colostomy. They were all so good that no one knew or had to be aware of their 'handicap' and therein lay part of their glory.

But it is the 'success' stories which are more familiar to the public which are in some ways more destructive. A specific example sticks painfully in my mind. I am a sports fan and, as such, an avid watcher of major events. The 1976 Olympics found me glued to my TV set and I was pleasantly surprised by a documentary which related to me quite personally. I think it was called 'Six Who Overcame' and told how six athletes had overcome some problem (five were directly physical) and gone on to win Olympic gold medals. One story really grabbed me. It was about Wilma Rudolph, a woman who had polio as a child. Through pictures and words, her struggle was recreated. Love, caring, exercise and hard work repeated endlessly until she started to walk slowly with crutches and then, abandoning them, began to run. And there in the final frames she was sprinting down the track straining every muscle. With tears streaming down my face, I shouted: 'Go on, Wilma! Do it! Do it!'. And when she did I collapsed, exhausted and exhilarated. But scarcely ninety minutes later, I was furious. For a basic message of the film sank in. In each case the person overcame. But overcame what? Wilma's polio was not my polio! And all the love, caring, exercise, and hard work could NEVER have allowed me to win a running race, let alone compete in one.

My point is that in almost all the success stories that get to the public, there is a dual message. The first one is very important: that just because we have polio, cancer, or multiple sclerosis, mental illness or have limited use of our eyes, ears, mouth and limbs, our lives are not over. We can still learn, be happy, be lovers, spouses, parents, and even achieve great deeds. It is the second message which I have recently begun to abhor. It states that if a Franklin Delano Roosevelt or a Wilma Rudolph could OVERCOME their disability, so could and should all. And if we fail, it's our problem, our personality, our weakness. And all this further masks what chronic illness and disability are all about. For our lives or even our adaptations do not centre around one single activity or physical achievement but around many individual and complex ones. Our daily living is not filled with dramatic accomplishments but with mundane ones. And most of all, our physical difficulties are not temporary ones to be overcome once-and-for-all but ones we must face again and again for the rest of our lives. That's what chronic means!

Now, this great achievement syndrome effects not only the general public but also the achievers. We are paid the greatest of compliments when someone tells us 'You know, I never think of you as handicapped'. And we gladly accept it. We are asked, 'How did you make it against such great odds?'. And we answer the question. And yet in both the accepting and the answering we further distance ourselves from the problems of having a disability. In a sense they become both emotionally and cognitively inaccessible. I am not using these words lightly. I do indeed mean emotionally and cognitively inaccessible.

Let me illustrate with a personal example. I do a great deal of long-distance travelling and, as such, often find my jet flight located on the furthest runway from the entrance. Adjusting to this, I ordinarily allow myself an extra twenty to thirty minutes to get there. I regarded this for most of my life as a minor inconvenience. And if perchance you had asked me then if I experienced any undue tiredness or avoidable soreness, I would have firmly and honestly answered, 'No'. But in 1977, a new 'consciousness' altered all this (Zola 1982). Piqued at why I should continue to inconvenience myself I began to regularly use a wheelchair for all such excursions. I thought that the only surprise I would encounter would be the dubious glances of other passengers, when, after reaching my destination, I would rise unassisted and walk briskly away. In fact I was occasionally regarded as if I had in some way 'cheated'. Much more disconcerting, however, was that I now arrived significantly more energetic, more comfortable, freer from cramps and leg sores than in my previous decades of travelling. The conclusion I drew was inevitable. I had always been tired, uncomfortable, cramped and sore after a long journey. But with no standard of comparison, these feelings were incorporated into the cognitive reality of what travelling was for me. I did not 'experience' the tiredness and discomfort. They were cognitively inaccessible.

What I am contending is shockingly simple. The very process of successful adaptation not only involves divesting ourselves of any identification with having a disability, but also denying the uncomfortable features of that life. To not do so might have made our success impossible! But this process had a cost. One may accept and forget too much.

The experience of having a disability need not, however, be as isolating as it once was. There is a movement of people with disabilities to reclaim their rights (Scotch 1984). People with various disabilities now see that they have much in common both with each other (Harris 1986) and with other minority groups (Hahn 1985). We realize that we can take greater control and care over our lives and our health.

This talk has presented one set of experiences and concerns. I am sure the specific details and hardships of having a disability vary from person to person. But not the core problem. The story is inevitably difficult to both hear and tell. To the teller, it is especially hard to acknowledge. Indeed, to even think of the world in such a realistic, paranoid way might make it too depressing a reality to tolerate. As such, the only defense, the only way to live for far too long has been to deny it. But then it becomes socially invisible to all. We are sadly left as Slater (1970) has articulated: both those with physical disabilities and those without, all are deprived of the very knowledge, skill, resources, and motivation necessary to promote change.

Dubos, R. J. (1961), Mirage of Health: Utopias, Progress and Biological Change, Doubleday, New York (quote is from flyleaf).

Goffman, E. (1963), Stigma: Notes on Management of Spoiled Identity, Prentice-Hall, Englewood Cliffs, NJ, pp. 105-235.

Hahn, H. (1985), 'Disability Policy and the Problem of Discrimination', American Behavioural Scientist, Vol. 28, pp. 293-318.

Harris, L. and Associates (1986), Disabled Americans Self- Perceptions: Bringing Disabled Americans into the Mainstream, Study No. 854009, International Centre for the Disabled, New York.

Scotch, R. K. (1984), From Good Will to Civil Rights: Transforming Federal Disability Policy, Temple University Press, Philadelphia.

Slater, P. E. (1970), Pursuit of Loneliness: American Culture at Breaking Point, Beacon Press, Boston. P. 15.

Zola, 1. K. (1982), Missing Pieces - A Chronicle of a Living with a Disability, Temple University Press, Philadelphia, PA.