Table Of ContentUnexpected
Unexpected
Parenting, Prenatal Testing, and Down Syndrome
Alison Piepmeier
with George Estreich and Rachel Adams
NEW YORK UNIVERSITY PRESS
New York
NEW YORK UNIVERSITY PRESS
New York
www.nyupress.org
© 2021 by New York University
All rights reserved
References to internet websites (URLs) were accurate at the time of writing. Neither the au-
thor nor New York University Press is responsible for URLs that may have expired or changed
since the manuscript was prepared.
Library of Congress Cataloging- in- Publication Data
Names: Piepmeier, Alison, author. | Estreich, George, editor. | Adams, Rachel, 1968– editor.
Title: Unexpected : parenting, prenatal testing, and Down syndrome /
Alison Piepmeier, with George Estreich and Rachel Adams.
Description: New York : New York University Press, [2021] |
Includes bibliographical references and index.
Identifiers: LCCN 2020016531 (print) | LCCN 2020016532 (ebook) | ISBN 9781479816637
(cloth) | ISBN 9781479879953 (paperback) | ISBN 9781479865468 (ebook) | ISBN
9781479827183 (ebook)
Subjects: LCSH: Mothers of children with Down syndrome. | Motherhood. |
Prenatal diagnosis. | Children with Down syndrome. | Family planning—
Decision making. | Sociology of disability.
Classification: LCC RJ506.D68 P53 2021 (print) | LCC RJ506.D68 (ebook) |
DDC 618.92/858842— dc23
LC record available at https://lccn.loc.gov/2020016531
LC ebook record available at https://lccn.loc.gov/2020016532
New York University Press books are printed on acid- free paper, and their binding materials
are chosen for strength and durability. We strive to use environmentally responsible suppliers
and materials to the greatest extent possible in publishing our books.
Manufactured in the United States of America
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Also available as an ebook
Frontispiece: Alison Piepmeier, October 2013. Source: Staff, The College of Charleston.
for Maybelle
Contents
Preface
George Estreich and Rachel Adams ix
1. “I Wouldn’t Change You If I Could”: Disability as a Form of
Human Diversity 1
2. The Inadequacy of “Choice”: Disability, Feminism,
and Reproduction 31
3. The Welcome Table 67
4. Saints, Sages, and Victims: Down Syndrome and
Parental Narrative 79
5. Accessible Words: Alison Piepmeier and the Boundaries
of Disability
George Estreich 103
6. Six Questions on the Special, the Inclusive, and
the Universal
Rachel Adams 123
Acknowledgments 139
Notes 143
Bibliography 157
Index 159
About Alison Piepmeier
Brian McGee 169
About George Estreich and Rachel Adams 171
Preface
Alison Piepmeier was a scholar of literature, feminism, and disability
studies; a prolific columnist and blogger; an activist; a beloved professor
and mentor; and a parent. For Alison, these roles and categories were
interconnected, so it is unsurprising that in her last and most ambi-
tious work, she tried to draw these strands together: to write a book that
included personal witness and analytical rigor, that fused an activist’s
fire, a poet’s eye, and a scholar’s care. The manuscript was left incom-
plete when Alison died of brain cancer, at the age of forty- three, in
August 2016.
Before she died, Alison and George communicated by email, then
by Skype, about the possibility of his completing the project. Realizing
the dimensions of the project and the expertise required, George told
Alison that he wanted to bring on their mutual friend Rachel as a co-
editor. Rachel, Alison, and George had known each other for years.
Like Alison, Rachel and George each have a child with Down syn-
drome; like Alison, they have written publicly about the experience
of parenting, linking it to questions of disability. Rachel’s training in
disability studies, feminism, and literature was a perfect complement
to the expertise George could contribute to this project. Alison gave
her enthusiastic approval to the idea, and Rachel accepted, with equal
enthusiasm.
This book is our attempt to complete the manuscript in accordance
with Alison’s wishes. It’s mainly composed of Alison’s writing—a n as-
sembly that highlights the best of her work, in line with the structure she
had set out. Each of us has also contributed a chapter about an aspect
of Alison’s work, offering context and appreciation for her achievement.
ix
x | Preface
* * *
In a blog post published shortly after Alison died, her husband Brian
McGee wrote, “To share a life with Alison Piepmeier was to be con-
stantly aware of her uneasy relationship with time.” He spoke of “Alison’s
unaffected brilliance” and added that “wit and erudition weren’t suf-
ficient to make her the enthusiastic presence, the cheerful dynamo so
many of us came to adore. Often, it was Alison’s anxious awareness of the
passage of time that provided the abundance of energy she channeled so
effectively to teach, to serve her community, to mentor students— and
always, always, to write. It was Alison’s anxious awareness of time that
frequently had her finishing tasks and moving on to the next challenge
hours or days before deadlines.”1
Alison was diagnosed with a brain tumor in early 2010. She died in
August 2016. As Brian wrote, her illness “changed her relationship with
time”— not only in symptoms, side effects, and radical shifts in her daily
routines, but also in facing the shock of medical prediction. “She had to
live with the ability of medical professionals to predict, however imper-
fectly, the most likely dates of her demise. . . . Focus was never Alison’s
problem, but nothing was quite so focusing as her physician’s affidavit
stating that she had 6– 12 months to live.”
Brian put his finger on the distinctive temporalities of illness and dis-
ability that writers like Alison Kafer, Ellen Samuels, and Robert McRuer
call “crip time.”2 Borrowing from queer theory, these scholars observe
that illness and disability can make time slow down or speed up, move
backward or sideways, or repeat itself, confounding traditional no-
tions of progress, development, and uniformity. Alison worked with the
queer-c rip understanding that she might not have the gradual, elongated
unfolding of a conventional life span. She lived with the patient’s sense
that time is not her own, given how much of it is spent waiting in the
shadow cast by the uncertain pronouncements of medical profession-
als. She also lived with an awareness of how unpredictable a body can
