front cover of Allies and Obstacles
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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front cover of On the Margins of Citizenship
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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