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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.
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