- Editorial Note
"I say that the strongest principle of growth lies in human choice."—George Eliot, Daniel Deronda (2004)
Reduced to its most basic task, bioethics is about choices. What is the ethical or unethical decision at a particular biomedical moment? What is most just or unjust for a disabled or infirmed loved one? What feels like the morally right or wrong decision in a healthcare moment? "Should we or shouldn't we" at a medical impasse?
Understandably, the question of choice has found an especially prominent and ethically contentious place in disability discourses. Are disabled lives, disabled identities, and disabled bodies themselves best understood as "chosen"? As terminological variations on this theme, disability scholar Simi Linton has asked in the past whether one should "claim disability" (1998). Rosemarie Garland-Thomson, a contributor to this volume, has asked whether we should "conserve disability" (2012). By contrast, utilitarian bioethicists have asked whether disabled bodies should or should not be preserved in the arsenal of best human lives. From John Robertson's Children of Choice (1994) to Martha Nussbaum's Frontiers of Justice: Disability, Nationality, Species Membership (2006) to Robert Veatch's recent Defining Death: The Case for Choice (2016), influential philosophers with a vested interest in the bioethics of disability have appreciated "choice" as an inescapably important variable in this terrain.
This special issue of the Kennedy Institute of Ethics Journal on the theme of "Choosing Disability" addresses these ethically, morally, and methodologically complex questions attached to the union of disability and choice. The genesis of this special issue comes from a conference that was held in Fall 2015 at the University of Pennsylvania's Perelman School of Medicine, in which a cadre of leading scholars in bioethics, disability studies, philosophy, and medical humanities convened to share insights [End Page ix] and critiques on contemporary notions of "choice" in disability discourse. All of the papers in this volume are a result of those trans-methodological and trans-ideological debates.
The issue begins with Erik Parens's article "Choosing Flourishing: Toward a More 'Binocular' Way of Thinking about Disability." Outlining the canonical positions in disability bioethics debates that argue for and against disability as a choice (from Tom Shakespeare  to Julian Savulescu ), Parens offers an insightful and nuanced perspective on how we in bioethics might avoid simple dichotomies in thinking about disability, as exemplified by the medical vs. social model. He also examines the sense in which prospective parents might be said to "choose disability" and argues that disability will, in some contexts, be viewed as a kind of enhancement.
Stephen M. Campbell and Joseph A. Stramondo address the complex relationship between disability and well-being. They distinguish four different respects in which disability might be said to be "bad for" a person and argue that we cannot make any such generalizations about disability's badness. This serves to complicate decisions about whether to choose disability since it cannot be simply written off as a harm.
Like Campbell and Stramondo, long-standing philosopher, bioethicist, and disability scholar Eva Kittay also critiques the commonly held assumption that life with a disability is worse than one without it, though her argumentative strategy is slightly different. She challenges the view that disabled people fare worse on subjective criteria (e.g. happiness and life-satisfaction) or more objective criteria (e.g. accomplishments, personal relationships, self-determination). In addition, she eloquently argues against the possibility of defending such a view without thereby expressing harmful attitudes about disabled people's lives.
Philosopher and bioethicist David Wasserman provides the next article titled "Better Parenting through Biomedical Modification." Like Kittay, he examines the prenatal, neonatal, and postnatal choices parents (and potential parents) are forced to make in regards to best lives and best bodies for their children and future children, though Wasserman's contribution seeks to bring the existence and complexity of diverse parental roles and aims into view. If there is a troubling (perhaps unavoidable) dilemma when disability-bioethics meets parenting-ethics, Kittay and Wasserman force us to address these reproductive/eugenic tensions head-on.
Turning from philosophical questions on the ethics of "choosing disability," our next authors get...