Living With the Label “Disability”: Personal Narrative as a Resource for Responsive and Informed Practice in Biomedicine and Bioethics

What is it like to live with the label “Disability?” NIB editorial staff and narrative symposium editors, Jeffery Bishop and Naomi Sunderland developed a call for stories, which was sent to several list serves, shared with the 1000 Voices Project community and posted on Narrative Inquiry in Bioethics’ website. The request for personal stories from people who identify with the label “disabled” asked them to: consider how the label “disability” interacts with other aspects of their life in health care settings; does the term “disability” reflect their actual embodied experiences of impairment or does it fail to do justice to their particular experience of impairment; describe the kind of experiences that are possible because of the impairment(s); discuss how the label has affected their “authentic voice”; and many other concepts about what effects the label has on their lives. These authors share deeply personal experiences that will help readers understand their world, challenges, and joys. Thirteen stories are found in the print version of the journal and an additional five supplemental stories are published online only through Project MUSE. The stories are complemented by four commentary articles by Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl. These scholars come from the disciplines of law, social work, media studies, medicine, and bioethics from Australia and the United States. Together, the symposium’s storytellers and commentators offer striking and informative insights into the everydayness of living with disabilities.