If Not Now, Then When? Taking Disability Seriously in Bioethics
Debjani Mukherjee, Preya S. Tarsney, Kristi L. Kirschner
Abstract
The impression of bioethicists as "dangerous," as articulated in Mouth Magazine in 1994, has continued to be a theme in the disability movement. We respond to three common responses by bioethicists to this impression-namely, this is from the past, and bioethicists are different now; this is an angry and extremist position; and the Americans with Disabilities Act and other disability rights and justice efforts have solved historical inequities. We draw on the historical record and on our collective experiences as bioethicists engaged in clinical consultation and education and as the founding, former, and current directors of a program focused on disability and rehabilitation ethics to argue that ableism and unexamined assumptions about people with disabilities have persisted in bioethics despite decades of counternarratives, research, and divergent perspectives. Ableism and such assumptions can lead to health care decisions that are prone to bias, mistreatment, and a lack of consideration of viable options for living with disability. As the field of bioethics moves toward certification examinations and as new generations join the field's ranks, these problems need to be rectified with solutions at the individual, interpersonal, and structural levels. It is past time to take disability seriously.