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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.