Narrating genetic disabilities: social constructs, medical treatment, and public policy.
The article compares three memoirs of genetically based disability: Lisa Roney's sweet, invisible body, Georgina Kleege's Sight Unseen, and Alice Wexler's Mapping Fate. The essay explores the tension between the narrow and the broad construction of disability, as demonstrated by the 1999 Supreme Court rulings on the ADA and as experienced by these three memoirists. It concludes that the approach of narrative bioethics, as exemplified by such a study of disability and illness narratives, can offer the medical and public policy community a valuable alternative perspective on genetic disability not as an incapacity, but as a set of social relations and practices.
Squier
S M
SM
Pennsylvania State University, University Park, USA.
D000328:Adult; D000013:Congenital Abnormalities / Q000235:genetics* / Q000523:psychology / Q000534:rehabilitation; D006233:Persons with Disabilities / Q000523:psychology* / Q000534:rehabilitation; D005260:Female; D006801:Humans; D008297:Male; D010817:Physician-Patient Relations; D011640:Public Policy; D012803:Sick Role