Allies and Obstacles

Disability Activism and Parents of Children with Disabilities

Allison C. Carey, Pamela Block, and Richard K. Scotch
Scholarly Achievement Award for a Book, North Central Sociological Association, 2021
Allison Carey, recipient of the 2021 Outstanding Career in the Sociology of Disability from the Disability and Society section of the American Sociological Association
Book Cover

PB: $34.95
EAN: 978-1-4399-1633-9
Publication: Jun 20

HC: $109.50
EAN: 978-1-4399-1632-2
Publication: Jun 20

Ebook: $34.95
EAN: 978-1-4399-1634-6
Publication: Jun 20

348 pages
6 x 9
2 tables

Addresses the nature and history of activism by parents of people with disabilities, and its complex relationship to activism by disabled leaders

Read an excerpt of Chapter 8 (pdf.)

Description

Parents of children with disabilities often situate their activism as a means of improving the world for their child. However, some disabled activists perceive parental activism as working against the independence and dignity of people with disabilities. This thorny relationship is at the heart of the groundbreaking Allies and Obstacles.

The authors chronicle parents’ path-breaking advocacy in arenas such as the right to education and to liberty via deinstitutionalization as well as how they engaged in legal and political advocacy. Allies and Obstacles provides a macro analysis of parent activism using a social movement perspective to reveal and analyze the complex—and often tense—relationship of parents to disability rights organizations and activism.

The authors look at organizational and individual narratives using four case studies that focus on intellectual disability, psychiatric diagnoses, autism, and a broad range of physical disabilities including cerebral palsy and muscular dystrophy. These cases explore the specific ways in which activism developed among parents and people with disabilities, as well as the points of alliance and the key points of contestation. Ultimately, Allies and Obstacles develops new insights into disability activism, policy, and the family.

Reviews

Through an insightful historical account, Carey, Block, and Scotch trace the goals, issue frames, tactics, strategies, and organizational forms associated with disability-based parental activism…. This book provides a careful and much-needed analysis of the interplay between parent activists and the disability rights movement…. Allies and Obstacles is a must-read not only for disability scholars in sociology and in disability studies but for scholars of social movements and political sociology.
American Journal of Sociology

" (A) thought-provoking book filled with new information about a phenomenon that has received little scholarly attention and raises questions about social movement fluidity, messiness, and complexity which should be of general interest to social movement scholars."
Mobilization

"Allies and Obstacles is a welcome addition to the academic literature on disability rights advocacy.... (A) comprehensive historical study of parent-led activism.... A key strength of the book is its intersectional lens, which acknowledges the numerous ways in which parental activist movements have centred the narratives and needs of privileged white communities."
Law and History Review

"(H)ighly informative....Besides raising interesting and difficult philosophical issues, Allies and Obstacles helps us tell the American story of parental activism. Like other stories, it is one of politicization and limited self-advocacy, and it also forces scholars to consider the effects of the background conditions of neoliberalism and inequity on parental advocacy and self-advocacy. It also lets us see similarities and differences between different forms of disability advocacy, not least the reasons why some organizations came into being long before others. Allies and Obstacles is an essential read that challenges facile categorizations, easy binaries, and any quick reliance on rights talk."
H-Disability

"(A)n in-depth historical and critical analysis of the documented and largely organized advocacy efforts of parents of children with disabilities.... This book is recommended for disability scholars interested in a unique appraisal of parent-led advocacy. The framing of strategy related to a rights narrative is of interest to policy advocates. Disability organizational leaders are also advised to read this book to consider the historical context of parent-led advocacy, power imbalances, and the ongoing volleying of responsibility for greater equity."
Review of Disability Studies

Table of Contents

Acknowledgments
Introduction

Part I Disability Activist Communities
1. Intellectual Disability and Parent Activism
2. Psychiatric Diagnosis, Disability, and Parent Activism
3. Autistic Identity and Parent Activism
4. Physical Disabilities and Parent Activism

Part II Cross-Disability Analysis
5. Timing: Factors Affecting the Emergence of Parent-Led Organizations
6. Frames and Positions within the Field of Disability Activism
7. Social Movement Strategies and Public Policy
8. Narratives of Rights
9. Parents, Children, and Advocacy across Life Transitions
Conclusion

Appendix: A Note on Methods
Notes
Bibliography
Index

About the Author(s)

Allison C. Carey is a Professor in the Department of Sociology and Anthropology at Shippensburg University. She is the author of On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America (Temple) and coeditor of Disability Incarcerated: Disability and Imprisonment in the United States and Canada and Disability and Community.

Pamela Block is a Professor of Anthropology at Western University. She is coeditor of Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability.

Richard K. Scotch is Professor of Sociology and Public Policy at the University of Texas, Dallas. He is the author of From Good Will to Civil Rights: Transforming Federal Disability Policy (Temple), coauthor of Disability Protests: Contentious Politics, 1970–1999, and coeditor of Disability and Community.


Subjects