African Studies Association Annual Meeting 2019
November 21-23, 2019, Boston, MA, USA.
Panel: Disability Rights in Kenya: Activism and Engagement with Communities
Date: November 22, 8:30
Presentation Title: Prenatal Genetic Testing and Congenital Disability: A Call for East African Perspectives
Abstract: While there is a proliferation of interdisciplinary scholarship on Western experiences of prenatal genetic testing and the social construction of congenital disability, this paper argues crucial insight could be gleaned from considering genetic testing and disability from an East African perspective. Biomedical technologies like genetic testing contribute to producing a medicalized framework for disability, which understands it as a biological characteristic detectable, preventable, or curable through medical intervention. This framework confers authority and credibility to medical experts, delegitimizes the experiential and embodied expertise of individuals with disabilities, their family, and informal carers, and demands personal responsibility from prospective parents to act as “good” citizens by managing and eliminating the social and political burden of disability where possible (Rapp 1999; Paul 1998). In East Africa, where neither access to safe abortion nor adequate supports for a child with disabilities are guaranteed, prospective parents are faced with a double bind in the pursuit of good parenthood and good citizenship. Further, the colonial history of Western technoscience, in which East Africans were cast as “living laboratories” in pursuit of Western medicine, provides a relevant backdrop to examine the “funneling of social concerns into a genetic prism” exemplified in genetic testing (Graboyes 2015; Bumiller 2009).