The Rock Ethics Institute

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Vulnerable Subjects: Ethics and Disability Life Writing

When Apr 04, 2005 3:00 PM to
Aug 04, 2005 4:00 PM
Where Foster Auditorium, 101 Pattee Library
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Professor of English and Director of Disability Studies, Hofstra University

G. Thomas Couser is Professor of English at Hofstra University, where he also directs the Disability Studies Program, which he inaugurated. He has a doctorate in American Civilization from Brown University (1977). His most recent books are Recovering Bodies: Illness, Disability and Life Writing (Wisconsin, 1997) and Vulnerable Subjects: Ethics and Life Writing (Cornell, 2004).

Vulnerable Subjects: Ethics and Disability Life Writing

Narrative demands difference: it is the anomalous case that warrants telling. And both in high and popular culture, very often the human difference that propels narrative is disability. Thus, among stigmatized minorities, disabled people are distinctive in not having been under-represented; if anything, they are prone to over-representation in fiction, drama, and film.

It is increasingly common for disabled people to be the subjects of non-fictional life narratives, yet in some cases their disabilities preclude or interfere with their controlling these narratives. This poses an obvious ethical dilemma. On the one hand, it is desirable for disability to be represented as it is actually experienced by particular human beings, rather than deployed as a metaphor, as is often the case in fiction and feature film. On the other hand, portraying people who may not be able to speak for themselves (and, in some cases, not able to grant meaningful consent) risks misrepresenting them. Disabled people, then, may be doubly vulnerable: prone to stereotyping and to having their narratives fashioned by others.

In my lecture, I will offer an approach to this ethical dilemma that draws on principles of biomedical ethics and ethnography. As a scholar whose work is rooted in literary studies, I am especially concerned with the implications of the various media and genres used to represent disability. I will therefore demonstrate my approach with reference to examples of different kinds of texts, such as the work of Oliver Sacks, Lauren Slater, Michael Dorris, and Rachel Simon.