SYMPOSIUM EXPLORING THE RIGHT TO DIE IN THE U.S.: ENDING-LIFE DECISIONS: SOME DISABILITY PERSPECTIVES

INTRODUCTION My contribution to this symposium on " Quinlan at 40: Exploring the Right to Die in the U.S." considers the challenges to end-of-life decision-making that disability poses. I am perhaps an odd choice to offer the disability perspective on this or any topic, as I am able bodied and of sound mind, at least for the moment. For the past thirty years, however, I have puzzled over how people with disabilities experience the health care system in this country and how the health care system experiences people with disabilities. 1 Either I am not very good at puzzles of this sort, or it is a really tough puzzle, or perhaps both. In any event, I am still struggling with it. The topic continues to engage me, because, to my mind, understanding what it means to be disabled is an inextricable part of understanding what it means to be human. In offering these perspectives, I do not speak for people with disabilities. Instead, this essay simply offers my understanding of views commonly expressed by members of the disability community. My starting premise is that disability lies at the heart of questions about making ending-life decisions 2 simply because most people whose lives end as the result of a decision to withhold or terminate medical treatment or to seek active medical assistance in dying are disabled. 3 Many persons whose lives end through such a conscious choice may have become disabled only near the end of their life, ...