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The Beautiful Unwanted: Down Syndrome in Myth, Memoir, and Bioethics
Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term. Some have predicted that as a result of parents’ choices, people with Down syndrome will disappear from our communities in the near future. Chris Kaposy, a bioethicist who has a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance.
Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. Layered throughout this history are elements of Kaposy’s personal experience with his son and family. Transcending monograph and memoir, The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. This account encompasses the changeling myths of Newfoundland, the “discovery” of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization, as well as recent advances in reproductive technology.
We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.
Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. Layered throughout this history are elements of Kaposy’s personal experience with his son and family. Transcending monograph and memoir, The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. This account encompasses the changeling myths of Newfoundland, the “discovery” of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization, as well as recent advances in reproductive technology.
We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.
199 pages, Kindle Edition
Published October 15, 2023
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About the author
Chris Kaposy
5 books1 followerChris Kaposy is Associate Professor of Bioethics in the Faculty of Medicine at Memorial University, Newfoundland.
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February 19, 2025
This is a really interesting book that pulls no punches. Chris Kaposy is very direct in his thoughts and discussion of Down syndrome and society's perception and tolerance (or lack of) to it. At times it made me very uncomfortable (I have a son with Down syndrome), and very sad. Bioethics is such a black and white field, with supposed answers to questions, and solutions to problems that are not black and white. Kaposy gives the reader much to confront and think about. But it also gave me hope for a humane future, and through anecdotes about his own family and son, gave a positive, yet realistic picture of life with a loved one who has Down syndrome.
Displaying 1 of 1 review