Live and Let Die? Disability in Bioethics

Abstract

One concept that has been vigorously contested since bioethics emerged is that of health. A related concept that has been less discussed is that of disability. Not that disability has been ignored, rather that it has come to occupy a sub-field of its own, ‘disability studies,’ whose assumptions tend to be at some distance from mainstream bioethics. Instead of viewing disability as an unfortunate natural fact, to be prevented or if this fails, compensated for, disability studies has tended to emphasise how disabilities are relative to social contexts, and the dangers of normalising ideas such as ‘health’ or ‘able-bodied.’ In this paper, Vehmas criticises the ways in which bioethics has tended to think of disability in individual terms, and attempts to bring together the insights of disability studies with the truths contained in bioethics’ most prevalent assumptions. In doing so, he emphasises a recurring theme of this volume. Since its conception bioethics has scrutinised the dilemmas and issues faced by individuals in health care contexts with admirable thoroughness. It has, however, had rather less to say about how individuals’ contexts of action are framed – what institutions are important, how they should be structured, how ethical dilemmas may reflect unacknowledged power imbalances and hidden injustices. Likewise, the cumulative effects of individuals’ choices, perhaps quite reasonable given their contexts of action, might have unexpected and undesirable consequences, that fall out of the picture when we focus on the rights and wrongs of individual decisions. The conclusions Vehmas draws regarding disability will be found controversial by many committed to bioethics. But what cannot be denied, we would like to suggest, is the importance of this broader line