Allies and Obstacles: Disability Activism and Parents of Children with Disabilities

Carey (sociology, anthropology, Shippensburg Univ.), Pamela Block (anthropology, Western Univ.), and Richard Scotch (sociology, public policy, Univ. of Texas, Dallas) explore parental activism “in order to reveal and analyze the complex historical and contemporary relationship of parents to disability activism.” The first section of the book considers the communities of intellectual disability, mental illness, autism, and physical disability. The second section focuses on cross-disability examination regarding rights and strategies. Language is also addressed, with explanations of person-first (person before diagnostic label) and disability-first (e.g., autistic person) terms. 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.