Allies and Obstacles: Disability Activism and Parents of Children with Disabilities

348 Pages·2020·2.734 MB·English

by  Allison C. Carey, Pamela Block, Richard Scotch

Allies and Obstacles

Allison C. Carey, pamela Block,
and richard K. scotch
Allies and Obstacles
Disability Activism and Parents
of Children with Disabilities
temple university press
Philadelphia  •   Rome  •  Tokyo
temple university press
philadelphia, pennsylvania 19122
tupress.temple.edu
Copyright © 2020 by temple university—Of The Commonwealth system
of Higher education
All rights reserved
published 2020
library of Congress Cataloging-in-publication Data
names: Carey, Allison C., author. | Block, pamela, author. |
scotch, richard K., 1951– author.
title: Allies and obstacles : disability activism and parents of children with disabilities /
Allison C. Carey, pamela Block, and richard K. scotch.
Description: philadelphia : temple university press, 2020. | includes bibliographical
references and index. | summary: “This book explores the tensions between the
disability rights groups advocating on behalf of people with intellectual, cognitive, and
psychiatric disorders including autism and allied advocacy groups representing parents
with children in those communities. These groups diverge over issues like independence
and recovery, and in their cultural and political capital”—provided by publisher.
identifiers: lCCn 2019042677 (print) | lCCn 2019042678 (ebook) | isBn 9781439916322
(cloth) | isBn 9781439916339 (paperback) | isBn 9781439916346 (pdf)
subjects: lCsH: parents of children with mental disabilities. | parents of children with
disabilities. | Children with mental disabilities—Civil rights. | Children with mental
disabilities—social conditions. | pressure groups.
Classification: lCC HQ759.913 .C365 2020 (print) | lCC HQ759.913 (ebook) |
DDC 649/.15—dc23
lC record available at https:// lccn .loc .gov/ 2019042677
lC ebook record available at https:// lccn .loc .gov/ 2019042678
The paper used in this publication meets the requirements of the American national
standard for information sciences—permanence of paper for printed library materials,
Ansi Z39.48-1992
printed in the united states of America
9 8 7 6 5 4 3 2 1
Contents
Acknowledgments vii
introduction 1
Part I DIsabIlIty actIvIst communItIes
1 intellectual Disability and parent Activism 31
2 psychiatric Diagnosis, Disability, and parent Activism 60
3 Autistic identity and parent Activism 84
4 physical Disabilities and parent Activism 108
Part II cross-DIsabIlIty analysIs
5 timing: Factors Affecting the emergence of parent-led
Organizations 133
6 Frames and positions within the Field of Disability Activism 151
7 social movement strategies and public policy 183
8 narratives of rights 199
9 parents, Children, and Advocacy across life transitions 227
Conclusion 245
Appendix: A note on methods 259
notes 261
Bibliography 301
index 329

Acknowledgments
In many ways, this book is the product of decades of conversations and
scholarship on disability activism as it emerges from, intersects with, and
sometimes resists other forms of disability activism. Over this time, many
people have contributed to the formulation of our ideas. We first acknowledge
ryan mulligan, our editor at temple university press, the temple university
press team, the peer reviewers, and colleagues who provided direct commen-
tary on portions of the manuscript, especially Brian Grossman, Cheryl nar-
jarian sousa, and Blyden potts. A version of Chapter 6 was previously pub-
lished as Allison C. Carey, pamela Block, and richard K. scotch, “sometimes
Allies: parent-led Disability Organizations and social movements,” Disabil-
ity Studies Quarterly 39, no. 1 (2019), http://d sq- sds. org/a rticle/v iew/6 281/5 183.
We thank the DSQ editors and peer reviewers. We are deeply grateful for the
time and perspectives given to us by the activists we interviewed and for all
of the work they have contributed to transform the world and open opportu-
nities for people with disabilities. We owe a debt of gratitude broadly to all the
activists and scholars who push the boundaries of justice—in the streets, in
classrooms, on the stage, at kitchen tables, online, and anywhere else. each of
us also has personal thanks to offer.
allison
i am deeply thankful to my family and the Arc for giving me opportunities
to engage with disability communities from an early age. my current
viii / acknowledgments
interests were nurtured by my parents’ ardent work to support all of their
children in living fulfilling lives. While i was in graduate school and new to
disability rights activism, the intrepid sociologist steve taylor was the first
to explain to me the tensions that sometimes exist between parent activists
and disabled activists and to challenge my assumptions of justice. After the
release of my first book, richard proposed collaborating on a book focusing
on parent activism, and we are so fortunate that pam joined us as well. it has
been a joy to work with them. Friends and colleagues at shippensburg uni-
versity, the society for Disability studies, and the American sociological
Association supported and challenged this work through its many iterations
in presentations. nick macy, a former student of shippensburg university,
assisted with interview transcription. i am indebted to the scholars and
activists involved in various online collections, including the Disability
rights and independent living movements collection at the university of
California, Berkeley; temple university’s visionary voices; and nicki pom-
bier Berger’s collection nothing About us Without us. Finally, i am deeply
grateful to my husband and daughter for their continued love and support.
Pamela
i reiterate Allison’s thanks to the society for Disability studies and the
American sociological Association and thank the society for Applied An-
thropology as well, for providing the opportunity for presentation, peer
discussions, and review of early versions of most of the chapters in the book.
The wonderful colleagues in these organizations provided thoughtful feed-
back, which i sincerely appreciate. i thank my stony Brook university dis-
ability studies students and student volunteers who also listened to and read
earlier versions of this book. special thanks go to elaine Cheung for
assistance with formatting the references and other forms of research as-
sistance with this project. my gratitude goes to the Anthropology Depart-
ment at the university of Western Ontario. The department chair, A. Kim
Clark; the faculty; and the students have welcomed me to my new academic
home with open arms. i thank the people who agreed to be interviewed for
the autism chapter and who shared their stories, especially Jeremy and lisa.
i am grateful to my family—my husband, matthew lebo, and children,
shoshana, isaac, and Harrison lebo—for their love and support. i am for-
ever grateful to my mother, Barbara Kilcup, and my sister Hope Block, who
are the reasons i undertook this project. i am thankful to my sister Karen,
stepmother Dale, Aunt marty, mother-in-law Fern, and the rest of the cous-
ins, aunts, uncles, stepfamily, and in-laws who have provided so much lov-
ing care for Hope, Karen, and me since our mother and father passed away.
acknowledgments / ix
richard
i thank my colleagues Allison Carey and pam Block for their helpful and
thoughtful encouragement and support throughout the creation of this
book. i appreciate the assistance of my graduate and undergraduate stu-
dents at the university of texas at Dallas, who provided background re-
search and help with editing, particularly Jingnan Bi, Brett Cease, Carla
ramazan, rajadhar reddy, Kara sutton, and yingyuan Zhang. As always,
i am grateful to Jenny Keller and Grace Keller scotch for all that they have
given me and continue to share.