Diagnosed in 1985 with myalgic encephalomyelitis/chronic fatigue syndrome, Susan Wendell's reflections address her struggle first with illness and then with the lasting "social and psycho-ethical" conflicts illness and disability generate in contemporary Western culture. Her specific focus on feminist theory comes from her increasing awareness that "knowledge people with disabilities have about living with bodily suffering and limitation and how their cultures treat rejected aspects of bodily life . . . did not inform theorizing about the body by non-disabled feminists and that feminist theory was consequently both incomplete and skewed toward healthy, non-disabled experience"(p.5).

A chapter on "Who is Disabled?" engages current definitions of disability, who produces them, for what purposes, and to what effect. This chapter addresses the cases of illness and aging and explores the political and other values of the category, "people with disabilities." Other chapters discuss the social construction of disability, disability and illness as stigmatized states that might be re-envisioned as "difference," the enculturation of myths about bodily control and independence, medical authority's inflection of embodiment, the importance of disability perspectives to feminist ethics, and perspectives on transcending the body.


The personal narrative that frames this book clarifies Wendell's arguments effectively and helps make them accessible to all audiences. One memorable insight is Western culture's difficulty imagining that people can live well while chronically ill or disabled; that people can be both ill and happy, both ill and productive. Another is the disabling aspect of modern performance expectations, which mark and exclude anyone who moves or thinks more slowly than expected.

In the process of making her arguments, Wendell offers a particularly readable and thorough survey of some of the most central questions engaged by disability studies scholars, including the definition of disability (and illness's complex status within such definitions). A significant feature of this book is its conceptualization of incurable, non-fatal illness within the theoretical realm of disability studies rather than that of medical humanities. Broadly speaking, this shift moves Wendell's analysis of illness as a cultural product into the political realms that are the extension of the interpersonal ones (doctor and patient, patient and family, patient and community) in which illness has often been analyzed.



Place Published

New York



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