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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.