What prenatal tests and down syndrome reveal about our reproductive choices.
When Alison Piepmeier—scholar of feminism and disability studies, and mother of Maybelle, an eight-year-old girl with Down syndrome—died of cancer in August 2016, she left behind an important unfinished manuscript about motherhood, prenatal testing, and disability. In Unexpected, George Estreich and Rachel Adams pick up where she left off, honoring the important research of their friend and colleague, as well as adding new perspectives to her work.
Based on interviews with parents of children with Down syndrome, as well as women who terminated their pregnancies because their fetus was identified as having the condition, Unexpected paints an intimate, nuanced picture of reproductive choice in today’s world. Piepmeier takes us inside her own daughter’s life, showing how Down syndrome is misunderstood, stigmatized, and condemned, particularly in the context of prenatal testing. At a time when medical technology is rapidly advancing, Unexpected provides a much-needed perspective on our complex, and frequently troubling, understanding of Down syndrome.
Use code UNEXPECTED30-FM for 30% off when purchasing the book through NYU Press.
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Alison Piepmeier directed the Women’s and Gender Studies Program at the College of Charleston in Charleston, South Carolina, where she was associate professor of English. She was the author of Girl Zines: Making Media, Doing Feminism, among other books.
George Estreich is the author of Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves and The Shape of the Eye: A Memoir. He teaches writing at Oregon State University.
Rachel Adams is Professor of English and Comparative Literature at Columbia University. She is the author of many books, including Raising Henry: A Memoir of Motherhood, Disability, and Discovery, and co-editor of Keywords for Disability Studies.
Alondra Nelson is president of the Social Science Research Council and Harold F. Linder Professor at the Institute for Advanced Study. A scholar of science, technology, and social inequality, she is author, most recently, of The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome, as well as Body and Soul: The Black Panther Party and the Fight against Medical Discrimination; Genetics and the Unsettled Past: The Collision of DNA, Race, and History; Technicolor: Race, Technology, and Everyday Life; and “Afrofuturism.”
Sayantani DasGupta is a faculty member in the Master's Program in Narrative Medicine, the Center for the Study of Ethnicity and Race and the Institute for Comparative Literature and Society, all at Columbia University. Originally trained in pediatrics and public health, her work has appeared in journals including The Lancet, JAMA, Pediatrics, The Hastings Center Report, Literature and Medicine, Teaching and Learning in Medicine, and The Journal of Medical Humanities. She is also a bestselling author of children’s literature.
Arden Hegele is Medical Humanities Fellow at the Society of Fellows and Heyman Center for the Humanities and Lecturer in English and Comparative Literature at Columbia University. She is co-director of the Motherhood and Technology Working Group and co-editor of Synapsis: A Health Humanities Journal.
Co-sponsored by Explorations in the Medical Humanities; and the Motherhood and Technology Working Group at CSSD