An anthropologist explains what disability studies is-and why he thinks it could be so much more.
By William J. Peace
Disability studies is among the hippest and newest fields in American academia. As a college student would say, disability is cool, worthy of intense academic debate and serious scholarship. In the last decade, disability studies has created its own jargon and graduate programs in the field are popping up across the country.
At the undergraduate level one can major or minor in disability studies. One can also get an MA or PhD in the field at prestigious universities. Disability studies has its own flagship publication, Disability Studies Quarterly, and professional association (Society for Disability Studies, or SDS). Why is disability studies in vogue and, more generally, what does the field encompass? The answer to these two questions is complex. While I cannot provide a comprehensive answer, I can provide readers of Action with a general guide. But I should disclose that I have a bias against the field and some of the leading figures.
De-medicalizing Disability
The origins of disability studies can be found in the 1960s Civil Rights movement, and the epicenter of the movement that would give way to disability studies was in the San Francisco Bay area. The efforts of scholars like Bob Roberts and advocacy organizations like United Spinal would lead to many of the laws and accommodations people take for granted today such as curb cuts, accessible mass transportation, and the passage of the Americans with Disability Act (ADA) in 1990.
In my estimation, disability scholarship as it is known today began with the publication of the Body Silent by Robert Murphy in 1987. While other scholars such as Irving Zola and Irving Goffman had been studying disability for many years, Murphy was the first prestigious scholar based at an Ivy League institution to critically examine disability from a cultural perspective. Murphy did something in the Body Silent that no other person had done before: he bared his soul and evocatively convinced readers that the main problem people with disabilities faced was not their disability, but the social consequences it generated. For Murphy, disability was a social malady.
Subsequent studies in the humanities and social sciences definitively “de-medicalized” disability. That is, disability studies scholars did not look at individuals or disability in isolation, but rather considered disability as part of the social structure of America. This was a giant leap forward theoretically, and, for those with disabilities, provided them with a way of understanding disability that was empowering.
For the first time, people with disabilities understood that the problems they encountered were not of their own making, but reflected societal bigotry. Given this new perspective, for the first time in history people with disabilities began to think of themselves as a single, united, and oppressed minority group. This led disability rights activists to push for the passage of the ADA while disability studies scholars published ground-breaking books like Joseph Sapiro’s No Pity, Nancy Mair’s Waist-High in the World, and Rosemarie Garland Thomson’s Extraordinary Bodies.
Coming of Age
The plethora of academic studies published throughout the 1990s firmly entrenched disability studies as a legitimate area of specialization. Disability studies, as it is practiced today, touches upon multiple fields: literary studies, anthropology, sociology, feminism, modernism and post-modernism . If one is interested in disability studies, where do they start researching? There are a handful of programs identified by the SDS in the country: Center for Disability Studies at the University of Hawaii; Disability Studies at the University of Maine; Disability Studies concentration at Syracuse University; Center for Disability Research at Uppsala University; Institute for Disability Policy at the University of Southern Maine; Institute of Human Development at Northern Arizona State University; Institute on Disability at the University of New Hampshire; Department of Disability and Human Development at the University of Illinois at Chicago. I would add the following to this list: Institute on Disability at Temple University, Rock Ethics Institute at Penn State, and Disability Studies at the University of California at Berkeley.
Just like any institution of higher education, all of the colleges and universities listed above have their strengths and weaknesses. Virtually all the programs mentioned fit within what is called “diversity studies” and as such are analogous to Women’s Studies and African American Studies. All disability studies programs place disability within a social and political context and challenge stereotypical norms associated with disability. The results of disability scholars is as diverse as the people with disabilities studied.
Among the scholars I admire and the books they have written that I consider exceptional include:
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• Michael Bérubé (Life as We Know It)
• James I. Charlton (Nothing About Us Without Us)
• Gelya Frank (Venus on Wheels)
• Lennard Davis (Bending over Backwards)
• Paul Longmore (Why I Burned My Book and other Essays on Disability)
• Simi Linton (Still Me)
• and Kim Nielson (Radical Lives of Helen Keller).
This list is by no means comprehensive. What the authors and texts share in common is a passion, wit, outstanding scholarship, and a commitment to disability studies and the rights of people with disabilities. Their works represent what valuable contributions scholars can make to this burgeoning field.
A Critique
If disability studies has so much to offer, why do I dislike the field? To be blunt, disability studies has lost its soul. Studies produced are intellectually challenging and their authors are undoubtedly gifted academics. But in my estimation they have done nothing to alleviate the fact that people with disabilities remain the most overlooked, disenfranchised, and stigmatized minority group in American society.
The ADA, a law designed to protect the civil rights of people with disabilities, has been gutted by the courts. One need not be a lawyer to observe that there is an overwhelming bias against disability even before a plaintiff enters the court. The result is lip service paid to disability rights; as a rule, people with disabilities are perceived to be isolated narcissists rather than an oppressed minority. The implications are clear: people with disabilities place unnecessary and selfish demands on society.
This cultural narrative is ideal fodder for disability studies scholarship. The problem is the field is distanced from the disability rights movement from which it came. This disconnect is unfortunate, for I am convinced disability studies is not merely an intellectual endeavor but a field that demands action of those who enter it-action that can enhance the quality of life for people with disabilities and the society in which they interact.
William J. Peace has a PhD in Anthropology from Columbia University. He is the author of Leslie A. White: Evolution and Revolution in Anthropology.
