Undoing Hardship: Life Writing and Disability Law

"Whether the ADA has the transformative effect that its supporters predicted will ultimately not be resolved in the courtroom."

Matthew Diller, "Judicial Backlash" (87)

The opening words of the introduction to Kay Schaffer and Sidonie Smith's recent book, Human Rights and Narrated Lives: The Ethics of Recognition, link human rights and life narrative in a way that is highly applicable to disability as a human rights (and civil rights) issue:

The post-Cold War decade of the 1990s has been labeled the decade of human rights . . . . Not incidentally, it has also been described as the decade of life narratives, what commentators refer to as the time of the memoir. Many of these life narratives tell of human rights violations. Victims of abuse around the world have testified to their experience in an outpouring of oral and written narratives…. [These narratives] begin to voice, recognize, and bear witness to a diversity of values, experiences, and ways of imagining a just social world and of responding to injustice, inequality, and human suffering. Indeed, over the last twenty years, life narratives have become one of the most potent vehicles for advancing human rights claims.

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Progressive disability laws (the ADA, its American antecedents, and its international equivalents) are prime examples of contemporary civil rights legislation, and, as I have argued elsewhere ("Disability" 604), the current burgeoning of disability memoir is related to these legal initiatives insofar as both life narrative and disability law are aspects of a broad disability rights movement. To this extent, the story of disability rights activism and disability life writing can be subsumed in Schaffer and Smith's master narrative of the simultaneous worldwide emergence and convergence of life narrative and human rights campaigns.

Further, the aims of the Disability Rights Movement are essentially those of the Universal Declaration of Human Rights (UDHR), which, according to Schaffer and Smith, "signaled . . . a collective moral commitment to just societies in which all people live lives characterized by dignity, equality, bodily inviolability, and freedom" (2). Nor is it incidental that the adoption of the Declaration in 1948 "was an aftereffect of the revelation of war crimes by Japanese and German war efforts and the war crime trials, especially the Nuremberg trials" (14). Like the UDHR, the Nuremberg Code was engendered by the revelations of the Nuremberg Trials, especially the series of cases known collectively as the Nuremberg Medical Trial (1946), which addressed the brutal experiments carried out on the bodies of people with disabilities in Nazi Germany. Thus, there is a strong historical connection between disability history and the advocacy of human rights.

In their discussion of human rights violations, however, Schaffer and Smith concentrate on depredations against groups defined by ethnicity, race, gender, or religion. (Their case studies involve Apartheid in South Africa, oppression of indigenous people in Australia, the exploitation of sex prisoners in East and Southeast Asia during World War II, incarceration in the U.S., and the democracy movement in China.) So although their generalizations are just as relevant to disabled people, the pertinence of disability rights to the universal discourse of human rights goes almost without mention in their book. While they are entitled to define the scope of their project—which is impressively global and inclusive—it's unfortunate that, once again, disabled people appear only marginally on the radar of cultural critics.

It appears, then, that although human rights discourse and disability narrative may have converged in the recent past as never before, that convergence has not been fully recognized. There are a number of reasons for this. One is that among marginalized groups, people with disabilities have been the most hidden from public view. Many have been sequestered in institutions, and although their institutionalization has typically been represented as humane, even benevolent, it has denied them voice as well as visibility. A case in point is John Tayman's new book, The Colony, about the former leper colony on Molokai. Despite the welcome attention this book brings to the colony, archival material apparently did not permit Tayman to give voice to the people who were quarantined there.¹ And...