Professor's Book Unites Disability Rights Advocates, Bioethicists

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Albany Law School Professor Alicia Ouellette’s latest book, Bioethics and Disability: Toward a Disability-Conscious Bioethics, takes on the tension between disability rights scholars and bioethicists. According to some disability rights activists, bioethicists focus too broadly on the concept of patient rights at the expense of the practical challenges facing individuals with disabilities.

“The book explores why this tension exists, and it takes seriously the charge that medicine in general, and bioethics in particular, would better serve people of all abilities if it were more mindful of disability issues,” explained Professor Ouellette, who is also a professor of bioethics at the Union Graduate College/Mt. Sinai School of Medicine Program in Bioethics.

For example, Professor Ouellette continued, “A man who was rendered a ventilator-dependant quadriplegic via a motorcycle accident became despondent after being isolated for months in nursing homes and a hospital ICU. He petitioned a court for – and won – the right to turn off his ventilator. While bioethicists argued that the choice to end his life was his alone, disability experts intervened and found a way for him to live and work at home, which improved his life and ultimately contributed to his decision not to turn off the ventilator.”

“Working together, bioethicists, disability rights advocates, doctors and nurses can learn to look past disability to see the bigger picture, thereby developing appropriate, comprehensive treatments that ensure positive quality of life for everyone,” concluded Professor Ouellette.

A leading scholar in the field of bioethics, Professor Ouellette is co-editing the definitive Cambridge Dictionary of Bioethics (forthcoming) and contributed the article “Growth Attenuation, Parental Choice, and the Rights of Disabled Children: Lessons from the Ashley X Case” to the Houston Journal of Health Law. She has been published widely throughout her career in academic journals such as the American Journal of Law and Medicine, the Hastings Center Report, the American Journal of Bioethics, the Indiana Law Journal and Oregon Law Review.