by Rayna Rapp

about Rayna Rapp

Rayna Rapp is Professor and Associate Chair of the Department of Anthropology at New York University. She is the author of the award-winning book Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (1999) and coeditor, with Faye Ginsburg, of Conceiving the New World Order (1995), as well as numerous articles and reviews. Her current research with Faye Ginsberg focuses on cultural innovation in special education in New York City.

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...