Unexpected. Alison Piepmeier

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      NEW YORK UNIVERSITY PRESS

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      NEW YORK UNIVERSITY PRESS

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      References to internet websites (URLs) were accurate at the time of writing. Neither the author 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

      1. “I Wouldn’t Change You If I Could”: Disability as a Form of Human Diversity

      2. The Inadequacy of “Choice”: Disability, Feminism, and Reproduction

      3. The Welcome Table

      4. Saints, Sages, and Victims: Down Syndrome and Parental Narrative

      5. Accessible Words: Alison Piepmeier and the Boundaries of Disability

      George Estreich

      6. Six Questions on the Special, the Inclusive, and the Universal

      Rachel Adams

      Acknowledgments

      Notes

      Bibliography

      Index

      About Alison Piepmeier

      Brian McGee

      About George Estreich and Rachel Adams

      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 ambitious 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 incomplete 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 syndrome; 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—an assembly 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.

      * * *

      In a blog post published shortly after Alison died, her husband Brian McGee wrote, “To share a life with Alison Piepmeier was to be constantly aware of her uneasy relationship with time.” He spoke of “Alison’s unaffected brilliance” and added that “wit and erudition weren’t sufficient 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 imperfectly, the most likely dates of her demise. . . . Focus was never Alison’s problem, but nothing was quite so focusing as her physician’s СКАЧАТЬ