Document Type

Article

Publication Date

2017

Abstract

In the forty years since Quinlan, disability has been present in the conversation within medicine, bioethics, and law about the acceptability of death-hastening medical decisions, but it has at times been viewed as an interloper, an uninvited guest to the party, or perhaps the guest whom the host was obliged to invite, but whose presence was not entirely welcomed. Notwithstanding some short-term reversals and counter-currents, the steady arc of end-of-life law during the past four decades has been towards liberalization of ending-life choices by and for patients who are severely compromised or near the end of their lives. During that time, many leading thinkers and activists in the disability community have questioned that liberalization. My sense is that physicians, bioethicists, and lawyers have sometimes viewed disability advocates’ questioning as marginal, if not bordering on the paranoid, or as the product of manipulation by other interest groups. Disability concerns may be perceived as distracting attention from broadly-held values and interfering with progress. As a result, discussions about ending-life decisions within the bioethics, medicine, and law communities and those within the disability community too often proceed along parallel tracks, rather than directly engaging with each other. I contend that, because most ending-life decisions are made by or for disabled persons, persons with disabilities must be included at the center of conversations about the meaning of and limits on those decisions. This essay does two things. First, it briefly describes the nature of and basis for disability concerns about the liberalization of ending-life decisions. This account is largely descriptive and explanatory, summarizing the reasons for the apprehension that many in the disability community experience surrounding treatment termination and physician-aided dying. I offer this account recognizing both that I am not a person with a disability and that people with disabilities have diverse views on these issues. Second, this essay considers how recent conversations about racial justice issues in policing and criminal justice, promoted by the Black Lives Matter movement, among others, might offer parallels to the concerns of disability advocates. To my mind, these parallels help explicate the concerns of disability activists and reveal them as deeply imbued with social justice commitments.

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