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.

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 co-editor of Disability Incarcerated: Disability and Imprisonment in the United States and Canada and of Disability and Community.
Pamela Block is a Professor of Anthropology at Western University. She is co-editor 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), co-author of Disability Protests: Contentious Politics, 1970–1999, and co-editor of Disability and Community.

TABLE OF CONTENTS

Acknowledgements 1

Chapter 1 Introduction 4

Part I: Disability Activist Communities 42

Chapter 2 Intellectual Disability and Parent Activism 43

Chapter 3 Psychiatric Diagnosis, Disability, and Parent Activism                                                                                     82

Chapter 4 Autistic Identity and Parent Activism 114

Chapter 5 Physical Disability and Parent Activism 147

Part II: Cross-Disability Analysis 179

Chapter 6 Timing: Factors Affecting the Emergence of Parent Led Organizations 180

Chapter 7 Frames and Positions within the Field of Disability Activism  203

Chapter 8 Social Movement Strategies and Public Policy 248

Chapter 9 Narratives of Rights 270

Chapter 10 Parents, Children, and Advocacy across Life Transitions                                                                                     316

Chapter 11 Conclusion 340

Appendix A: A Note on Methods 358

Endnotes 360

Bibliography 386