More than thirty years ago, in an essay called "Uncle Tom and Tiny Tim: Some Reflections on the Cripple as Negro," I suggested that cripples emulate the civil rights movement by focusing on political solutions to the problems of living under difficult physical conditions. (It's a lost battle, but I continue to prefer the term "cripple" to the bland "disabled.") The problems cripples faced seemed as much the result of our inability to define our needs as they were the fault of a society quite willing to live with its ignorance of those problems and quite willing not to see us at all unless absolutely forced to. It wasn't until the late 1960s that cripples began to believe that they had the right to demand that America meet their needs.
Anyone who has spent significant time living with a serious physical condition probably has had an experience similar to the following: entering a restaurant with another person, he (or she) finds that the waiter is addressing not him but the person he is with. He is a category, and categories are simply assumed to be unable to take responsibility even for something as minor as placing an order. Yet even such infantilization can seem liberating if the cripple realizes that the problem it bespeaks is political rather than psychological: One infantilizes the other by assuming attitudes held by society at large. And this process is something that the cripple, too, is encouraged to do. Even Randolph Bourne, as tough a social critic as America ever produced, looks inward in his famous essay "The Handicapped," published back in 1911. Writing about other issues, Bourne understands that political problems demand political solutions. But when it concerns the cripple, among whose ranks he was numbered, he was curiously inner-directed and soft.
The demand for the rights of cripples was already under way as I was writing "Uncle Tom and Tiny Tim." And while I would be happier without much of the rhetoric of the Disability Rights Movement, to its credit, it has helped change the consciousness of those who must confront the world with physical disabilities. Both its success and its burgeoning political potential seemed wishful thinking in 1969, when I still dismissed its prospects. But that success was confirmed with the enactment of the Americans With Disabilities Act in 1990. Despite its admitted weaknesses, few Congressional acts more deserve the term "landmark legislation." The Americans With Disabilities Act promised those forced to live with severe physical impairments the possibility of legal if not functional equality. Its most profound accomplishment, even allowing for the vagueness of definition that has come to haunt it, was to accept the idea that cripples have the right to specific accommodations that meet their employment needs. For a population battling the indignities of permanent illness, its promise was comparable to that of the Civil Rights Act for African-Americans in 1964.
Twelve years after its passage, that promise seems about to be swamped by a legal system in which what constitutes a workplace disability is undefined and perhaps undefinable. The confusion about what would seem to be the most elementary of definitions--what is meant when we speak of a disability--threatens to weaken if not make the act virtually useless. The cripple's demand for rights still commands a good deal of public interest and a degree of public sympathy. Yet the Americans With Disabilities Act has not led to widespread political activity on behalf of the nation's cripples. Their quest for equality is not only threatened with that most severe of American sins, being relegated to political unfashionability, but the question of what a disability is shows few signs of being resolved in favor of those whom the act was supposed to help. Recent Supreme Court rulings in which disability was ill defined must be seen as setbacks for those who look to the judiciary to enforce what the act called for, a policy of accessibility and inclusiveness. The Court ruled in April by a 5-to-4 majority in US Airways v. Barnett that US Airways' seniority system took precedence over the right of a disabled worker to transfer to a more suitable job. In Toyota Motor Manufacturing v. Williams, the Court ruled unanimously that the definition of disability must mean substantial limitations on abilities "central to daily life," not just the job. And the Court also unanimously held, in mid-June in Chevron U.S.A. v. Echazabal, that employers had the right to refuse to hire a worker whose health they believed might be impaired by performing a particular job.
For this alone Ruth O'Brien's Crippled Justice is a welcome addition to the literature on living with disability. A professor of political science at the City University of New York, O'Brien approaches her subject armed with an analytical perspective nurtured by her earlier work. Her first book, Workers' Paradox: The Republican Origins of New Deal Labor Policy, 1886-1935, already reflected her interest in the subject of workers' rights. Yet even academic inquiries can be rooted in personal experience. "Had I not sustained what is now a ubiquitous workplace injury," she writes, "a debilitating case of bilateral tendinitis in my hands and forearms, I might never have explored the development and implementation of...disability policy." Yet the focus of Crippled Justice is neither personal nor anecdotal. It is a serious inquiry into the history of public policy as that policy has affected large numbers of men and women crippled by illness, accident or birth. As serious scholarship is expected to be, it is factual and analytical. The past few decades have witnessed a rich expansion of memoirs and essays by writers forced to struggle with their own physical or mental deterioration, books that depict what life is like for those who must live it with severe illness. But the kind of political analysis O'Brien offers in Crippled Justice is what, I believe, cripples need now.
Analysis demands perspective, particularly when it begins in personal experience. While bilateral tendinitis may not have the same sort of consequences as, say, pushing through life in a wheelchair or trying to earn a living as a blind person, the experience limited O'Brien's normal ability to function. It turned her temporarily from normal to cripple. And however temporary an experience, it was also sufficiently dehumanizing to give her a strong sense of what life is like for those forced to live with more severe conditions. The first discovery one makes on entering the shadowy world of cripples is that one no longer defines need, ability and ambition for oneself. The experience of living with disability forced Ruth O'Brien to recognize that the cripple must "struggle over the same issues that women and minorities battle." But she also saw that the problems cripples faced were in some ways less soluble and in others more mechanical than the problems of other groups. Nothing would be more beneficial to cripples as a group than a fantasy I've held for the past decade--a law that would make it mandatory for every elected official in the country to live a single week each year as a cripple.
If nothing else, that would show that the problems involved are as political as they are psychological. And that is why I am grateful that Crippled Justice restricts itself to the conditions cripples confront in the workplace. To the writer, physical disability offers a personal confrontation. And as is the case with writers, that confrontation is about language. But what the cripple confronts in the workplace, as O'Brien shows, are confrontations that have solutions. And those solutions are political. What she tells us about the history of disability policy in the workplace may not be as powerful or as dramatic as, say, Andre Dubus writing about the changes that were imposed upon his life by the sudden transition he underwent from being a normal man to being wheelchair-bound. Nor does Crippled Justice offer us the savage honesty of Harold Brodkey writing about his own impending death from AIDS. O'Brien's focus is more mundane, which is to say that it is more political: She is interested in the possibility of a meaningful work life for those who lack the talent of a Dubus or a Brodkey.
We do not, of course, read memoirs and essays to create public policy but to recreate individual lives. Yet if the experience of being forced to live as a cripple is invariably personal, the reality of how one lives that life is invariably political. I have no choice but to accept being in a wheelchair. On the other hand, the New York through which I push myself has any number of choices in how it reacts to my need for that wheelchair. It is able to define how I live, what is now subsumed under that horrendous phrase "quality of life," through the public policy decisions it makes. Such seemingly trivial items as the condition of the streets through which I push speak less eloquently but more truthfully of what is or isn't possible for me than Dubus's essays or my own essays or Nancy Mairs's essays. Public policy defines the boundaries of the cripple's life. Mundane issues such as the condition of the streets and the accessibility of restaurants and stores and theaters (and how the Court defines disability) speak to the cripple's ability to live with dignity.
The first half of Crippled Justice offers a historical overview of the rehabilitation of the cripple in America. The ideas dominating medical and social policy after the end of the Second World War in 1945 were largely formulated by two physicians, Dr. Howard Rusk and Dr. Henry Kessler. (War may be unhealthy for children and other living things, but it has done wonders for the fields of prosthetics and rehabilitation medicine.) Rusk and Kessler are among the villains of the book, since, along with Mary Switzer, the federal bureaucrat responsible for the Vocational Rehabilitation Act of 1954, they created models of rehabilitation still largely followed today. From Freud and even more from William Menninger, rehabilitation medicine was inspired to shift its focus from the need to treat the cripple's physical symptoms to the need to treat the whole person. And the models were psychological. O'Brien describes "the deep strain of individualism in American liberalism" as the source of the mistaken path rehabilitation medicine took. Yet I am not convinced that individualism is so negative in the life of the cripple. No one can overcome the effects of disability through mere willpower or a well-developed work ethic--but a well-developed sense of self helps if one is to be a "success" as a cripple. One might even suggest that the successful cripple must combine a free-market head with a socialist soul. Perhaps more than others do, he needs to see himself as singular. After all, what else can account for all those memoirs about the singularity of the experience of disability? The best passage I know about living as a cripple--as moving to me as Shylock's "Hath not a Jew" speech--wasn't written by a cripple but by a healthy Saul Bellow at the height of his powers. Put into the mouth of the poolroom entrepreneur in The Adventures of Augie March, its power derives from how it speaks for us cripples as it speaks about Einhorn's aching sense of his individual quandary.
O'Brien is on more solid ground when writing about how Rusk and Kessler expected the "sick" individual to "adjust" to what they viewed as a "healthy" society. The cripple unable to make the adjustment was a social and psychological problem. Even so, one can argue that the individualism O'Brien finds irritating is the cripple's best chance to find salvation. Ambition should be made of sterner stuff than turning all problems into psychological barriers. At the same time, the desire to get even with an unjust fate shouldn't be dismissed lightly. Liberalism may have a lot to answer for where attitudes toward the cripple are concerned, but excessive concern with individualism is not the biggest item on that bill. Still, the psychologizing of disability was a mistake for which we continue to pay a price. And it remains, I believe, the source of the Court's restricted vision of workplace disability.
The conditions cripples face in the workplace cannot be conquered by their adjusting to normal society but by society making certain minor but necessary adjustments to their problems. By the 1970s the psychological definition of the cripple had already shown how limited it was. But is it better to define the cripple legally? Despite its immense promise, the Americans With Disabilities Act is, as O'Brien writes, "an idiosyncratic body of law." Where once cripples had to convince the world of their ability to meet standards set by normals, they are now expected to meet thresholds of disability set by a Court that seems oblivious to the obvious. When the issue is as clear-cut as it was in the case of the golfer on the PGA Tour, Casey Martin, whose bone deterioration made it impossible for him to walk the links although it didn't prevent him from playing golf, the courts seem willing to allow the spirit of the original act to serve as its definition. But even that makes the judiciary our "modern-day experts of vocational rehabilitation because of the idiosyncratic nature of disability." The Court has not yet claimed the right to define whether an individual is or is not a cripple. But by insisting on its right to define what constitutes disability in the workplace, it has assumed the power of defining what the consequences of being a cripple are. As far as work is concerned, cripples "have gone from being subjects of medicine to subjects of law." Whether this is an improvement over the psychologizing of disability is certainly open to question. The conclusion of Crippled Justice is not despairing but it is skeptical. And for good reason. In a valuable study of workplace disability as both a political and social issue, O'Brien has performed a service to anyone interested in social justice. Unfortunately, recent Supreme Court decisions threaten to make her skepticism the book's lasting legacy. Whether defined by the judges or doctors, it seems to be the cripple's fate to be defined as the other.