The individualist model of autonomy and the challenge of disability

Journal of Bioethical Inquiry 5 (2/3):193-207 (2008)
Abstract
In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision.
Keywords Disability  Autonomy  Genetics  End-of-life care  Ableism
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Citations of this work BETA
Anita Ho (2011). Trusting Experts and Epistemic Humility in Disability. International Journal of Feminist Approaches to Bioethics 4 (2):102-123.
Wendy Rogers, Catriona Mackenzie & Susan Dodds (2012). Why Bioethics Needs a Concept of Vulnerability. International Journal of Feminist Approaches to Bioethics 5 (2):11-38.
Ignaas Devisch (2011). Progress in Medicine: Autonomy, Oughtonomy and Nudging. Journal of Evaluation in Clinical Practice 17 (5):857-861.
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