Disability Bioethics

[lightreads]

Disability Bioethics: Moral Bodies, Moral Difference by Jackie Leach Scully


My rating: 4 of 5 stars
Argues that bioethics to this point has approached issues relevant to disability – genetic screening of embryos, refusing cochlear implants, etc. – without adequately addressing how the normative project of ethics can be squared with non-normative experiences of disability. That bioethics has been approaching disability from the perspective of the able-bodied frame of reference, which in my experience is completely true. She advocates for greater empirical and experiential work on ethics and disability, and suggests some fascinating ways that atypical somatic experiences can inform a person's subjective moral understandings, and thus a person's ethical beliefs about medical care.

Short but dense. I wouldn't recommend it for a newcomer to disability theory, certainly, as it's much richer with a contextual background. I was particularly interested in the chapter deconstructing narratives of disability in memoir and literature, and the brief but penetrating discussion of the enormously negative mainstream responses to chosen disability (disabled parents who choose not to prevent the birth of a disabled child, etc.). Smart and disturbing, and very helpful in my current thinking.

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