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 a blog entry by the authors

Read an excerpt of Chapter 8 (pdf.)


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.


"Allies and Obstacles examines how parental involvement in their own children's lives and in disability-wide advocacy has impacted and continues to impact disability rights advocacy in the United States.... (T)he authors provide an excellent resource for parents and adult disability activists to help each understand more about the other."
Future Reflections

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."

"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

"This new book on disability and parent activism is a welcome addition to scholarly work around this important area of study.... This book demonstrates the necessity and critical importance of acknowledging and addressing the historical and contemporary tensions that exist between parents of disabled people and disabled activists.​... (T)he information covered in this volume is more than worthy of scholarly study (while being of great practical relevance and use); its true value is how adept it is for consumption by non-academic, 'typical' families, and for disabled people."

"(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."

"Allies and Obstacles is a highly recommended addition to the disability studies literature. The authors bring an impressive depth of knowledge and insight to this compelling and readable book. They weave together how advocacy movements of parents of children with disabilities formed and connected—and at times disconnected—with the disability rights movement. Setting these advocacy efforts within the wider context of American society, public policy, and social activism, this book further explores how these disability advocacy efforts have helped determine what life is like for people with disabilities in the United States today.”—Professor Nora Ellen Groce, Director of the International Disability Research Centre, University College London

"(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

“Allies and Obstacles is an important, timely, and balanced analysis of the persistent tensions that have long existed between parents and self-advocates in the disability rights movement. The authors provide an insightful historical analysis of parental activism and then build on that foundation with an exploration of how individual family members come to participate in advocacy activities. The case studies are impressive, and the combination of archival research and qualitative interviews allows a personal perspective to ground the theoretical concepts. Parents, family members, disabled adults, and anyone with an interest in disability rights and advocacy should find this book of interest.”—Philip Ferguson, Emeritus Professor of Education at Chapman University

" The authors give historical background on the evolution of disability activism and the difficulties that parents and children face. Organizations like the Arc and the National Alliance on Mental Illness are discussed along with the effects of life transitions, timing, and public policy. Understanding how to navigate the system when a child is disabled is a challenge for all involved, and this study gives context to the conversation. VERDICT An extensively researched resource that provides a look into the world of disability advocacy. This scholarly book is ideal for academic libraries, though public libraries should also consider this for health collections."
— Library Journal

Table of Contents


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

Appendix: A Note on Methods

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.