BiblioVault - Books about Carey, Allison C.

Allies and Obstacles

Disability Activism and Parents of Children with Disabilities

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

Temple University Press, 2020

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.

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Family and Disability Activism

Beyond Allies and Obstacles

Edited by Pamela Block, Allison C. Carey, and Richard K. Scotch

Temple University Press, 2025

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

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On the Margins of Citizenship

Intellectual Disability and Civil Rights in Twentieth-Century America

Allison C. Carey

Temple University Press, 2010

On the Margins of Citizenship provides a comprehensive, sociological history of the fight for civil rights for people with intellectual disabilities. Allison Carey, who has been active in disability advocacy and politics her entire life, draws upon a broad range of historical and legal documents as well as the literature of citizenship studies to develop a “relational practice” approach to the issues of intellectual disability and civil rights. She examines how and why parents, self-advocates, and professionals have fought for different visions of rights for this population throughout the twentieth century and how things have changed over that time.

Carey addresses the segregation of people with intellectual disabilities in schools and institutions along with the controversies over forced sterilization, eugenics, marriage and procreation, and protection from the death penalty. She chronicles the rise of the parents’ movement and the influence of the Kennedy family, as well as current debates that were generated by the impact of the Americans with Disabilities Act passed in 1990.

Presenting the shifting constitutional and legal restrictions for this marginalized group, Carey argues that policies tend to sustain an ambiguity that simultaneously promises rights yet also allows their retraction.

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