Thursday, July 12, 2012

Francis on Ouelette on Bioethics and Disability

It's apparently bioethics day here at the blog.  Leslie Francis has a book review just out in the Journal of Legal Medicine on Alicia Ouelette's book, Bioethics and Disability: Toward a Disability-Conscious Bioethics.  The review appears at 33 J. Legal Med. 285 (2012).  The review begins:
Alicia Ouellette's Bioethics and Disability: Toward a Disability-Conscious Bioethics is an informative account of legal and ethical tensions between the field of bioethics and some aspects of disability advocacy. At the book's core are case studies to illustrate how paradigms of analysis in bioethics may lie at cross-purposes with disability rights and to suggest theoretical and practical means to reconciliation. Ouellette's admirable goal in the volume is to build detente and trust between the two perspectives. Her practical suggestions about how this might be accomplished are helpful contributions to this difficult task, especially her views about the implementation of procedural protections. I am less convinced by her strategies for reconciliation at the theoretical level, for reasons detailed at the conclusion of this review. 
Ouellette contends that people with disabilities have been medicalized and marginalized by bioethics practice. Although perhaps overstating the connection between bioethics and clinical medicine, she provides powerful descriptions of how some bioethics commentary and consultation have been infected by misinformation and disability bias. She explains the importance to bioethics of listening to the voices of people with disabilities, unearthing prejudice, and pursuing inclusive justice. To put the call of the book in Ouellette's own words: “A disability-conscious bioethics will incorporate important but overlooked knowledge, evince sensitivity to the values, concerns, and interests of members of the disability community, acknowledge the biases and alliances that affect various parties' perspectives, and focus on principles of importance to disability work that are sometimes overlooked in bioethics -- nondiscrimination, full and effective participation and inclusion of people with disabilities, respect for difference, and accessibility.” [345] So far, so very good. 
My concerns about her proposals for theoretical reconciliation between bioethics and disability advocacy rest in Ouellette's characterization of the two approaches. “Bioethics,” she writes, “promotes informed individual choice in medical care, even when the choice leads to the death of a patient.” “Disability experts,” in contrast, “promote the protection of people with disabilities as a group, even when the community interest might conflict with the choice of an individual member.” [13] I have doubts both about the somewhat simplistic individualism attributed to bioethics and about the group-rights consciousness and approach attributed to disability advocacy. Moreover, a deep methodological divide is implicitly if not explicitly revealed in the book: between what might be characterized as philosophical analysis and an approach that takes emotional responses and relational commitments as equally important not only to respect for others but also to judgments about the appropriateness of arguments. It is not quite right to characterize this as the difference between philosophy and advocacy. Nor is it quite right to see this only in epistemological terms, as about the role of non-cognitive forms of knowing. Instead, it seems to me to be a normative commitment, to the view that certain forms of argumentation must yield in light of the pain they may cause or their risks for being used in discriminatory ways.

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