Unexpected: Parenting, Prenatal Testing, and Down Syndrome

Alison Piepmeier

Published by New York University Press 2021

Unexpected

Parenting, Prenatal Testing, and Down Syndrome

Alison Piepmeier
In collaboration with: George Estreich and Rachel Adams

https://doi.org/10.18574/nyu/9781479865468.001.0001

Overview
Contents

About this book

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.

Author / Editor information

Piepmeier Alison :

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.Estreich George :

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.Adams Rachel :

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.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.

Reviews

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

A thought-provoking book at the value of all human life … This book should reassure parents who choose to skip genetic testing or decide not to terminate pregnancies after learning their fetus may not be 'normal.' Like Piepmeier and her coauthors, they may well find unexpected joys in happy, loving kids.

Asks questions such as, what is the line between illness and disability, and how can a parent deal with uncertainties? … Shares rarely heard stories from parents and prospective parents who have confronted challenging decisions about a fetus with Down syndrome … provides insight into a segment of the population rarely explored.

Topics

Frontmatter Publicly Available Download PDF	i
Contents Publicly Available Download PDF	vii
Preface George Estreich and Rachel Adams Publicly Available Download PDF	ix
1. “I Wouldn’t Change You If I Could”: Disability as a Form of Human Diversity Requires Authentication Unlicensed Licensed Download PDF	1
2. The Inadequacy of “Choice”: Disability, Feminism, and Reproduction Requires Authentication Unlicensed Licensed Download PDF	31
3. The Welcome Table Requires Authentication Unlicensed Licensed Download PDF	67
4. Saints, Sages, and Victims: Down Syndrome and Parental Narrative Requires Authentication Unlicensed Licensed Download PDF	79
5. Accessible Words: Alison Piepmeier and the Boundaries of Disability George Estreich Requires Authentication Unlicensed Licensed Download PDF	103
6 Six Questions on the Special, the Inclusive, and the Universal Rachel Adams Requires Authentication Unlicensed Licensed Download PDF	123
Acknowledgments Requires Authentication Unlicensed Licensed Download PDF	139
Notes Requires Authentication Unlicensed Licensed Download PDF	143
Bibliography Requires Authentication Unlicensed Licensed Download PDF	157
Index Requires Authentication Unlicensed Licensed Download PDF	159
About Alison Piepmeier Brian McGee Requires Authentication Unlicensed Licensed Download PDF	169
About George Estreich and Rachel Adams Requires Authentication Unlicensed Licensed Download PDF	171

Language: English
Publisher: New York University Press
Audience: Professional and scholarly;
Illustrations
- Other: 2 b/w illustrations

eBook

Published: February 23, 2021
ISBN: 9781479865468