Disability and Human Flourishing: Re-imagining the Role of Bioethics in Promoting a High Quality of Life with Chronic Health Conditions

Abstract: Decades ago, disability bioethicist Anita Silvers criticized mainstream bioethics for having a “fatal attraction to normalizing.” Even though the work of Silvers and other disability bioethicists have contributed to more nuanced discussions in bioethics about the role medicine should play in the lives of individuals with chronic health conditions, our field is still grappling with what it means to have a flourishing life with a disability and how ethics and the health humanities can play a role in helping disability communities achieve the highest quality of life possible. This interdisciplinary panel will grapple with the dilemma of how bioethics in medicine should promote disability flourishing. The first panelist, a clinical ethicist with a background in theology and literature, will explore how reliance on medical technology for objective signs of illness marginalizes patients whose symptoms cannot be captured by available technology. The second panelist, a philosopher, will draw on their lived experience of disability to articulate the concept of “disability gain” and its potential to challenge the orientation of bioethics and medicine to normalize disabled bodies. The third panelist, a political scientist with cerebral palsy, will explore how families of children with rare or undiagnosed disabling conditions conceptualize how their loved ones can flourish despite significant physical, sensory, or intellectual impairments. Finally, the fourth panelist, a disability studies scholar who teaches in a medical school, will consider what it means to incorporate examples of disabled flourishing into medical education when the concept poses conflicts with some of medicine’s fundamental goals.