Allies and Obstacles: Disability Activism and Parents of Children with Disabilities PDF
Preview Allies and Obstacles: Disability Activism and Parents of Children with Disabilities
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.
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