ABOUT THIS BOOK

In 2020, Pamela Block, Allison C. Carey, and Richard K. Scotch published Allies and Obstacles, which examined the tensions and connections between disability activism and parents of children with disabilities. In Family and Disability Activism, they continue to examine these issues with a focus on the path-breaking advocacy by marginalized activists with intersectional lived experiences.

Family and Disability Activism reveals how families and disabled people who identify as BIPOC and/or LGBTQIA2S+ understand issues of rights versus justice. Contributions by Deaf and disabled activists emphasize the frequent need for either care or independence. Other chapters show how members of the disabled community and their families must navigate systemic issues of segregation, institutionalization, and access to special education services differently depending on their ethnic and racial identities.

Expanding the conversation about disability, kinship, biological and chosen families, and activism, this volume amplifies important voices in the fight for disability rights.

Contributors: Erin Compton, Diane Compton, Jaclyn Ellis, Laura LeBrun Hatcher, Elena Hung, Bridget Liang, Jenelle Rouse, Cheryl Najarian Souza, Jeneva Stone, Roger A. Stone, Lisette E. Torres, Grace Tsao, and the editors

AUTHOR BIOGRAPHY

Pamela Block is a Professor of Anthropology at Western University. She is coeditor of Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability and coauthor of Allies and Obstacles: Disability Activism and Parents of Children with Disabilities (Temple).

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 Disability and the Sociological Imagination, and co-author of Allies and Obstacles: Disability Activism and Parents of Children with Disabilities (Temple).

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 Allies and Obstacles: Disability Activism and Parents of Children with Disabilities (Temple) and Disability Protests: Contentious Politics, 1970–1999; and the coeditor of Disability and Community.

REVIEWS

"Themes of parent-activism and amplifying children’s voices play out in every chapter. The stories bring intersectionality to life as living, breathing, and informing Equity, Diversity and Inclusion, Disability Studies and other fields of research. The book deserves to reach far beyond the disability community.... The book’s poignant final stanza is a rallying call made by disabled young person Erin Compton: ‘In a limitless world, we cannot limit ourselves to one way to speak, read or lead. We just can’t.’ This argues that action can take many forms, and needs to take different forms if it is going to be culturally ‘fitting’ to all communities.... The book hints at a future where future assistance and allyships, as well as obstacles in the path ahead, are unknown. With the various recommended solutions to demolish barriers, there is hope for a future truly beyond obstacles."—Disability & Society

“[T]his slim collection articulates the tensions that sometimes arise because of differing visions and priorities of BIPOC and LGBTQ+ persons with disabilities in relation to their families.... Family and Disability Activism takes an intersectional approach to case materials and narratives.... The authors recognize that for ethnic and racialized minority groups, parenting a child with a disability may come with punitive surveillance and start from a less-resourced socioeconomic position. Summing Up: Recommended.”—Choice

“One of the strengths of this collection is the diversity of insights and perspectives it offers on disability activism.... Concisely and compellingly, Family and Disability Activism demonstrates how culture and racial and ethnic identity affect disability activism.... [S]cholars and students of disability studies will appreciate the nuanced framing and engaging narratives that permeate this volume.”—History: Reviews of New Books

“The contributions in Family and Disability Activism emphasize the unique experiences that different social, racial, and ethnic identities have upon advocacy and activism.... Block, Carey, and Scotch have more than adequately pointed everyone in the right direction as well as provided a roadmap for future stories of families and disability activism yet to be told.”—Wordgathering

“In an introduction and nine chapters, diverse disabled activists, sometimes in conversation with family members, analyze the complexities of intersectionality. The editors and contributors write about hidden histories of racial-ethnic disability activism; the benefits and limits of cross-ethnic and cross-disability alliances; and the pressures that parents and siblings of disabled people face as they both support their loved ones and strive to normalize or resist the discrimination of medicolegal, educational, and service institutions. Authors, families, and strategies are as diverse as disability itself; Family and Disability Activism is an exciting foray into disability activism’s history, present, and future.”—Faye Ginsburg and Rayna Rapp, authors of Disability Worlds

TABLE OF CONTENTS

Contents

Acknowledgments

Introduction | Pamela Block, Allison C. Carey, and Richard K. Scotch

1. Familial Relationships in Asian American Disability Advocacy and Activism | Grace Tsao

2. Learnings from My Mother’s Couch Corner: Becoming a Latina Disability Activist | Lisette E. Torres

3. Tàcharan: An “Autie”-Ethnographic Examination of the Biopolitics of Changelings and Cyborgs | Jaclyn Ellis

4. Empathy Deficits among Neurotypicals | Bridget Liang

5. Black Deaf Ordinary Who Deliberately Signs | Jenelle Rouse

6. Intersections of Deafness, Blindness, Deafblindness, and Gender: The Deaf Community, Blindness, and Deafblind Activism in Families | Cheryl Najarian Souza

7. Aging Out of Children’s Hospitals: People with Complex Medical Conditions and Their Families in the Twentieth and Twenty-First Centuries | Pamela Block

8. Survive and Thrive: How Little Lobbyists Empowers Families to Fight for Disability Justice | Jeneva Stone, Elena Hung, Laura LeBrun Hatcher, and Roger A. Stone

9. How to Do Limitless Lifelong Self-Determination | Erin Compton and Diane Compton

Contributors

Index

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