Disability Activism and Parents of Children with DisabilitiesAllison C. Carey, Pamela Block, and Richard K. Scotch
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.
"(H)ighly informative....Besides raising interesting and difficult philosophical issues, Allies and Obstacles helps us tell the American story of parental activism. Like other stories, it is one of politicization and limited self-advocacy, and it also forces scholars to consider the effects of the background conditions of neoliberalism and inequity on parental advocacy and self-advocacy. It also lets us see similarities and differences between different forms of disability advocacy, not least the reasons why some organizations came into being long before others. Allies and Obstacles is an essential read that challenges facile categorizations, easy binaries, and any quick reliance on rights talk."
"(A)n in-depth historical and critical analysis of the documented and largely organized advocacy efforts of parents of children with disabilities.... This book is recommended for disability scholars interested in a unique appraisal of parent-led advocacy. The framing of strategy related to a rights narrative is of interest to policy advocates. Disability organizational leaders are also advised to read this book to consider the historical context of parent-led advocacy, power imbalances, and the ongoing volleying of responsibility for greater equity."
—Review of Disability Studies
“ Through an insightful historical account, Carey, Block, and Scotch trace the goals, issue frames, tactics, strategies, and organizational forms associated with disability-based parental activism…. This book provides a careful and much-needed analysis of the interplay between parent activists and the disability rights movement…. Allies and Obstacles is a must-read not only for disability scholars in sociology and in disability studies but for scholars of social movements and political sociology.”
—American Journal of Sociology
" (A) thought-provoking book filled with new information about a phenomenon that has received little scholarly attention and raises questions about social movement fluidity, messiness, and complexity which should be of general interest to social movement scholars."
"Allies and Obstacles is a welcome addition to the academic literature on disability rights advocacy.... (A) comprehensive historical study of parent-led activism.... A key strength of the book is its intersectional lens, which acknowledges the numerous ways in which parental activist movements have centred the narratives and needs of privileged white communities."
—Law and History Review