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Deciding on Death: Conventions and Contestations in the Context of Disability

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Abstract

Conflicts between bioethicists and disability theorists often arise over the permissibility of euthanasia and physician assisted suicide. Where mainstream bioethicists propose universalist guidelines that will direct action across a range of effectively disembodied situations, and take for granted that moral agency requires autonomy, feminist bioethicists demand a contextualisation of the circumstances under which moral decision making is conducted, and stress a more relational view of autonomy that does not require strict standards of independent agency. Nonetheless, neither traditional nor feminist perspectives have fully engaged with the critique of disabled people that they are consistently subjected to discriminatory, even life-threatening, practice and policy in biomedical and health care. The paper revisits some of the issues that drive the often highly polarised debate between bioethicists and disability theorists around the question of end of life decisions involving disabled people. While many bioethicists have doubtless been indifferent to the difference that disability makes, I am also concerned that the very proper demand of disability activists and theorists to scrutinise all end of life decisions for signs of discrimination and even violence has segued into something damagingly restrictive that silences internal dissension and stifles external debate. Given that euthanasia and physician assisted suicide may be issues where conventional argument on either side will founder on deeply felt convictions, I make the radical move to speculate on an entirely different, quasi-Deleuzian, approach to the value of life in order to shake up entrenched positions, and begin to think differently.

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Notes

  1. Given the international differences in privileging either the term ‘people with disabilities’ or ‘disabled people’, each of which comes with justifications, I intend, as is my usual practice, to use them interchangeably.

  2. I shall not further discuss involuntary euthanasia as such as it has no legal standing in contemporary western jurisdictions. That is not to say that supposedly freely given consent always reflects a fully voluntary choice.

  3. In taking a more postmodernist perspective, I am not committed to that explanatory model and understand the distinction between disability and impairment that many social constructionists insist on to be unsustainable. In brief, disability is always embodied, and though clearly given specific meaning in the context of social attitudes and values, is not produced solely by them. In any case, the body itself, and therefore any impairment, is not simply a biological given, but the outcome of multiple material and immaterial intersections [12].

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Acknowledgement

My thanks to Nancy Halifax, Rod Michalko, Janet Price, Tanya Titchkosky and others for ongoing conversation around the topic of this article. My views, of course, remain my own.

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  1. SSSPSW, Queen’s University Belfast, Belfast, BT7 1NN, Northern Ireland

    Margrit Shildrick

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Correspondence to Margrit Shildrick.

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Shildrick, M. Deciding on Death: Conventions and Contestations in the Context of Disability. Bioethical Inquiry 5, 209–219 (2008). https://doi.org/10.1007/s11673-007-9074-1

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  • DOI: https://doi.org/10.1007/s11673-007-9074-1

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