A review from Social Service Review, December 2001
The Disability Rights Movement: From Charity to Confrontation
Reviewed by John C. Bricout, Washington University
Doris Zames Fleischer and Frieda Zames chronicle the efforts of people with disabilities to forge a home in a society that seems bemused by the notion that self-determination is a higher value than charity. The authors are faithful to the varied and sometimes conflicting chorus of voices that constitutes the disability community, including deaf people, blind people, people with AIDS, people with a mental illness, and people with a physical disability. Although Fleischer and Zames lament the absence of a charismatic leader for the disability movement, they nonetheless celebrate the cumulative contributions of many individuals who lead by example. Stories of contributions made by famed leaders like Justin Dart, Lex Friedan, and Judith Heumann are complemented by stories of other courageous people like Nancy Rolnick and the Pacht family, who live far from the limelight but dose to their principles.
Twelve chapters recount the rich history of the disability movement in the United States with lively examples and well-researched detail bracketing the book's central questions: Who are people with disabilities, and where are we going? Those seeking a definitive answer to these questions will be gently discouraged by Fleischer and Zames's account, which steadfastly refuses to provide categorical answers for a group that has suffered too long from categorization. Fleischer and Zames also seem to reject any easy notions of progress, noting in the last chapter that the disability rights movement may be suffering from flagging energies today and, paradoxically, from the inertia that can arise from the many faces and agenda of disability.
One of the few shortcomings of this book that so assiduously captures many faces of disability are those faces that it does not register. Despite many allusions throughout the book to similarities in the struggles of people with disabilities and those struggles of racial and ethnic minorities, the unique experiences of people of color who have disabilities are not recounted. Similarly, despite recounting stories of both rich and poor people adapting to their disability (and societal handicaps), Fleischer and Zames do not engage in a reflective analysis of how socioeconomic status might create qualitatively different concerns for people with disabilities in different social classes. They are also largely mute on gender differences, despite flashes of recognition here and there in some of the firsthand accounts. This inattention to gender, race, ethnicity, and class-based disparities is unfortunate because of the opportunity such issues present for promoting social justice values, empowerment, and consciousness within the disability community as well as without. On the other hand, it could be argued that attending too much to differences that reflect larger societal conditions, beliefs, and practices might dilute the focus of the book, which is on the relations between people with disabilities and the dominant able-bodied culture and polity.
Despite these caveats, the book plays a unique role in the literature on the disability movement because it is forward looking as well as historical in its approach. It is also extraordinarily well researched across a wide range of domains and contains a good bit of thoughtful analysis, although there are times when Fleischer and Zames's advocacy lens visibly shapes the content and choice of arguments. The book's content runs the gamut from in-depth explorations of the experiences of different disability groups to historical discourse, environmental assessment, policy analysis, and emerging bioethical issues: an unmatched breadth of scope. The book begins and ends with discussions about what could be termed images of disability, starting with the nascent American disability movement in the early- to mid-twentieth century in chapter 1 and concluding with the emerging face of disability identity today.
Following the first chapter, Fleischer and Zames introduce the cornerstones of self-determination: deinstitutionalization, disability rights legislation, and litigation. Consistent with their justifiable skepticism about progress, they tackle the topic of public backlash to the Americans with Disabilities Act. They also introduce a reason for that same public to support the civil rights of people with disabilities: all people benefit from many accommodations to the built environment (such as curb cuts) and the workplace (such as flexible work hours). The benefits to the general public of making common cause with people with disabilities is a leitmotif that runs through the remainder of the book, culminating with what is at once an invitation and a warning. Fleischer and Zames observe that America's population is aging and disability is likely to become a condition not of the few but of the many, so enlightened self-interest demands that all Americans advocate for disability rights.
Fleischer and Zames point out that people with disabilities do not receive the same considerations as nondisabled people in the same circumstances of illness and health. Thus, the ability of people with disabilities to work, with or without accommodations, is often underestimated. In the realm of health care, disability is too often mistaken for illness, and illness not recognized because the metric for health is calibrated on the able-bodied. Medical benefits meanwhile may be altogether unsuited to maintaining people with disabilities in work or in health. Fleischer and Zames argue that society's commitment to "maintaining" people with disabilities may be suspect if one considers the slippery slopes created by assisted suicide legislation, genetic testing, and manipulation. In this portion of the book, Fleischer and Zames raise some critical ethical issues around the value of human life, the social costs of technology, and the compatibility of the profit motive with the availability of lifesaving medications.
At the same time, here perhaps more than other sections of the book, the advocacy lens threatens to weaken the credibility of key arguments. For example, computer technology is praised uncritically as providing tools for empowering people with disabilities in the workplace. Adequate consideration is not given to the possibility that people with disabilities might be relegated to the same uninspiring, routinized, and isolating work via computer that they did beforehand. How information and communication technologies will affect the lives of people with disabilities is an emerging issue whose outcome will depend not only on accessibility but also on user education and the fit between the user's aspirations and the designer's or employer's intentions. In another example, Fleischer and Zames warn of a slippery slope between assisted suicide and involuntary euthanasia in a society with strong commitments to low-cost health care and with weak commitments to prolonging the lives of stigmatized groups. In so doing they make an important call to consciousness. But given the deep roots of societal indifference to people judged infirm, should not more attention be given to challenging American society's worship of productivity as the sine qua non for a so-called valuable life?
Disabled veterans, children, and students, the focus of the next chapters of the book, might be better able to weather challenges about their productivity than others with disabilities, but even they struggle to receive the benefits enjoyed by their nondisabled peers. Fleischer and Zames seem to suggest that the general population must see how its interests coincide with those of people with disabilities if civil rights are to be assured and accommodations provided for citizens with disabilities. In principle, the logic of this argument is ineluctable, and yet it runs afoul in the particular and the short run. That is, people tend to react to immediate demands. If these are costly, people oppose them unless self-interest dictates otherwise. At the book's conclusion the reader is left wondering with Fleischer and Zames, how can we all come to agree that we share the same promise and plight?