Crafting and Retelling Everyday Lives—: Disabled People’s Contribution to Bioethical Concerns
Abstract

Abstract:

This commentary draws out themes from the narrative symposium on “living with the label “disability”” from the perspective of auto/biography and critical disability studies in the humanities. It notes the disconnect between the experiences discussed in the stories and the preoccupations of bioethicists. Referencing Rosemarie Garland-Thompson’s recent work, it suggests that life stories by people usually described as “disabled” offer narrative, epistemic and ethical resources for bioethics. The commentary suggests that the symposium offers valuable conceptual tools and critiques of taken-for-granted terms like “dependency”. It notes that these narrators do not un–problematically embrace the term “disability”, but emphasize the need to redefine, strategically deploy or reject this term. Some accounts are explicitly critical of medical practitioners while others redefine health and wellbeing, emphasizing the need for reciprocity and respect for the knowledge of people with disability, including knowledge from their experience of “the variant body” (Leach Scully, 2008).