by Faye Ginsburg
about Faye Ginsburg
Faye Ginsburg is Founder and Codirector of the Council for the Study of Disability at New York University, where she is also David B. Kriser Professor of Anthropology and Director of the Center for Media, Culture and History. She is an award-winning author/editor of four books, all reflecting her long-standing interest in cultural activism. She is currently working with Rayna Rapp on research and writing on cultural innovation and cognitive difference.
Family
The word “family” is highly charged in disability studies. On the one hand, families are seen as the site of nurturance, narrative, and theory building for those with disabilities ([Bérubé 1996;](/disability-studies/works_cited/berube-michael-se-2/ "Bérubé, Michael.SE") [Davis 2000a;](/disability-studies/works_cited/davis-lennard-j-se-3/ "Davis, Lennard J.SE") [Grinker 2007;](/disability-studies/works_cited/grinker-roy-richard/ "Grinker, Roy Richard.") [Kittay 1999](/disability-studies/works_cited/kittay-eva-feder-se/ "Kittay, Eva Feder.SE")). On the other, families are recognized as potential sites of repression, rejection, and infantilization. Whether seen positively or negatively, the term “family” is often taken for granted as a preordained, self-sufficient unit in discussions of family life influenced by disability. In the American context, the ideal of family generally involves parent-child relations in a classic heterosexual, nuclear, able-bodied household despite the coexistence of many other forms of family organization that incorporate members with disabilities: single parents, same-sex unions, extended family formations, and “families we choose.” Some of the earliest and much ongoing work on disability and family life builds on this assumed heteronormative Euro-American nuclear form. This writing predominantly comes out of clinical and applied research in the “helping professions” addressing the inclusion of family members with disabilities. It also is evident in memoirs ranging from parental reflections on raising a child with a difference, to first-person chronicles of living with a...