Unexpected: Parenting, Prenatal Testing, and Down Syndrome

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.

Alison Piepmeier was Director and Professor of the Women's and Gender Studies Program at the College of Charleston in Charleston, South Carolina. 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.