Unexpected: Parenting, Prenatal Testing, and Down Syndrome

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.

"Unexpected is a beautiful, thoughtful, and challenging co-authored and deeply reflexive book. It engages the porous lessons of disability, debility, death and an enduring love that is at once familial and friendship-centered. Collectively, Alison Piepmeier recruits George Estreich and Rachel Adams into a profound conversation that narrates their experiences of raising children with Down Syndrome as an optic on injustice, advocacy, and social transformation through this most intimate of parent-child relations." 

Rayna Rapp, author of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America

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Alison Piepmeier was an extraordinary person-- and a wonderfully versatile and effective scholar, essayist, and activist. In Unexpected, George Estreich and Rachel Adams have done her justice: they have assembled her final work on disability justice and reproductive rights, together with her bracing analyses of disability memoir, capping it off with two powerful essays on the legacy Alison leaves behind. Unexpected is literally a labor of love, and the world is a brighter place for it. 

Michael Bérubé, author of Life as Jamie Knows It: An Exceptional Child Grows Up

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Alison Piepmeier's Unexpected: Parenting, Prenatal Testing, and Down Syndrome calls our attention to issues relating to reproductive rights and abortion and considers them in ways far more complex and nuanced than usually is the case in our current heated debates. Unequivocally pro-choice, Piepmeier creates a site of resistance to dominant and dehumanizing cultural stereotypes regarding the supposed tragedy of having a disabled child. She speaks not just to the community of people with Down syndrome and those living with intellectual and/or physical differences and their supporters, but to everyone who is concerned with reproductive justice. Offering universal insights that go beyond the special and the inclusive, she grapples with key questions such as what it means to be both a person and a citizen, and she presents a compelling vision of a just society for citizens of all abilities. 

Chris Gabbard, author of A Life Beyond Reason: A Father's Memoir

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