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UnexpectedParenting, Prenatal Testing, and Down Syndrome$
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Alison Piepmeier

Print publication date: 2021

Print ISBN-13: 9781479816637

Published to NYU Press Scholarship Online: September 2021

DOI: 10.18574/nyu/9781479816637.001.0001

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Six Questions on the Special, the Inclusive, and the Universal

Six Questions on the Special, the Inclusive, and the Universal

(p.123) 6 Six Questions on the Special, the Inclusive, and the Universal

Rachel Adams

NYU Press

Rachel Adams uses a question-and-answer format to extend the conversations she has had with her friend and colleague Alison Piepmeier and to imagine which issues Alison might have tackled, had her friend lived beyond 2016. Rachel believes that Alison would have been wary of such developments in genomics as the commercialization of prenatal genetic tests, direct-to-consumer genetic services, and the gene-editing technology CRISPR-Cas9. She discusses Alison’s likely concerns about how genetic technology can influence society’s perception of disability, identity, and social justice. Rachel considers Alison’s response to conservatives’ continued use of disability to curtail women’s reproductive freedom today. The chapter also describes Alison’s likely concern that the #MeToo movement has overlooked people with disabilities. Rachel assumes that as Maybelle, Alison’s daughter, grows older, Alison’s own experience with a teenager and then an adult would have propelled her toward further examining such issues as sexuality, employment, and independence for people with intellectual disabilities. Finally, Rachel asks whether Alison would have had more to say about the differences between disability and illness and how much Down syndrome can represent other disabilities and how much it is simply one unique characteristic of some people.

Keywords:   prenatal genetic tests, gene editing, reproductive freedom, CRISPR-Cas9, identity, sexuality, employment, social justice, Down syndrome, intellectual disabilities

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