THE NEXT GREAT civil rights struggle is going to make the movements of the past look easy. The intellectual, emotional, financial and spiritual demands of granting equality to blacks and women are going to seem like child's play compared to the full liberation of the handicapped. As the authors of these books persuasively argue, the scandalous situation of the handicapped in our society is, like those other inequalities that only yesterday appeared to be laws of nature, basically a political problem. Disabled people are second-class citizens not because of the character of their bodily malfunctions, but because we able-bodied people will them so. By "will" I do not mean that we consciously wish them ill, but that our interpretation of their differentness imprisons them in subservience. Our culture believes that various abnormalities make otherwise perfectly able people unfit for full adulthood; unfit, indeed, for full humanity. We view them as patients suffering from an illness that has no cure, and thus render them perpetual dependents; everlasting, pathetic children.
This stigma, rather than physical inability per se, is the true meaning of being handicapped in this society, John Gliedman and William Roth believe.
If we view handicapped people as patients, one set of attitudes naturally follows, but if we view them instead as an oppressed minority, other attitudes are every bit as inevitable. What the authors undertake is nothing less than the destruction of the illness model for being handicapped. Able-bodied Americans have traditionally seen those characterized by certain abnormalities not as persons, similar in essence to ourselves, who are struggling courageously against intransigent difficulties, but as deviants from the norm of human existence. Most research has compared them with models developed to explain the behavior or development of the able-bodied. Because their circumstances are so different, handicapped people naturally show different reactions to some situations. Instead of acknowledging that these differences may represent useful adaptions to radically unorthodox social conditions, science, medicine, psychotherapy, sociology, and the other great powers that rule our minds have traditionally decreed that the differences are aberrations. Thus these differences serve to "prove" the generally held assumption that handicapped people are unlike, and therefore less mature and worthy than, the rest of us.
I cannot begin to summarize this long and erudite book in so brief a space. Suffice it to say that Gliedman and Roth do not demolish the old edifice of thought with broad, slashing strokes, but instead they dismantle it brick by painstaking brick. They discuss the disease model in all its many ramifications -- psychological, educational, medical, familial, economic, sexual -- and catalogue the damage it has done. The concept is so ingrained in our thinking that we often don't even see it. Statistics on disabled workers, to take one small but revealing example, traditionally exclude all those who are physically or mentally impaired but self-supporting.
This is a demanding book in the very best sense, rigorous and detailed. I only fear that these intellectual virtues, along with a certain heaviness of tone, may keep it from the wide audience its important conclusions deserve.
Indeed, the authors think so energetically and argue so meticulously that one sorely wishes they had discussed the various types of handicaps more specifically. They refer continuously and maddeningly to "the handicapped child," although they obviously know, and indeed state, that the limitations imposed by various handicaps are quite different. They decided to exclude consideration of specific physical conditions in order to keep the book within reasonable proportions, but the close attention to the genuine experiences of handicapped people that they demand from other researchers would seem to require at least as much specificity of themselves. Because of their decision, many parts of their paradigm do not fit significant numbers of cases; this weakens credence in sections of their argument, even if it doesn't lessen one's respect for their achievement as a whole. That the outline they construct is largely a map of what we do not yet understand can't be blamed on them, so meager is the sound research on the lives of handicapped people. Perhaps we shouldn't expect the early explorers of unknown oceans to note every cove and islet perfectly; it's enough that they get the continents in the right places.
Frank Bowe is an explorer of a different sort. While Gliedman and Roth map out the intellectual terrain, he industriously hunts for ways of improving present realities. The effects of the illness model are far from theoretical, he demonstrates. The assumption that handicapped people cannot be like the rest of us guides social policy and government expenditure, and thus becomes a self-fulfilling prophecy. "Today, America is spending $10 on dependence among disabled people for every dollar it expends on programs helping them to become independent," he writes. The web of programs, regulations and attitudes that keep huge numbers of people unnecessarily on the dole is leading not only to moral but to fiscal bankruptcy. Sound investment in the potential of millions of our fellow citizens would turn many "tax users into tax payers"; the book provides a sensible plan that would pay for itself many times over, quite apart from the vast improvement it would bring in the quality of millions of lives. With the penny-wisdom and pound-foolishness that so endear Washington to the nation at large, budget planners are throwing away bushels of potential tax receipts in the name of immediate "savings."
And Bowe is no mere visionary. An extraordinarily able investigator and activist who happens to be deaf, he knows the ground inch by inch. We could do far worse than to use him as our guide onto this profoundly unfamiliar terrain.