Context Matters: Disability, the End of Life, and Why the Conversation Is Still so Difficult

Abstract

This essay addresses the context that gives rise to conflicts between disability rights advocates and advocates for choice in dying. It argues that choice-in-dying advocates who want to diffuse the tension that marks interactions with disability-rights activists must begin to address the marginalizing, stigmatizing, and discriminatory aspects of the health care system sometimes experienced by people with disabilities. It then explores the experience of people with disabilities in the U.S. healthcare system, including disparities in care, and suggests that by better attending to systematic disparities faced by people with disabilities, advocates for choice in dying might begin to build trust and better communication with disability advocates.

Keywords: Disability, Bioethics, End of Life, Physician Aid in Dying, Discrimination, Health