Review by Amy Heider, University of Illinois-Chicago, Email: aheide3@uic.edu
Keywords: activism, physical disabilities, mental illness, philosophy, autism, education, philosophy
Allies and Obstacles features a collection of case studies that focus on the interaction between parent-led disability organizations and disabled activist organizations in the United States. The four case studies are divided into intellectual disability, mental illness, autism, and physical disabilities. Each case study is packed with information covering multiple organizations over several decades. Despite being packed with details, the writing remains approachable and engaging. Each chapter begins with the story of a parent navigating their own path to large or small-scale activism as they seek support and make decisions impacting their child’s education and lifestyle.
The stories of families gathered from interviews, memoirs, and social media posts, are used to illustrate the larger trends in parent movements and disability-led movements. The family narratives show the influence of teachers, medical professionals, and other authorities on the decisions of parents. For example, Peter Earley is encouraged to falsely claim to police that his young adult son threatened him in order to get him admitted to a psychiatric hospital instead of jail (p.61). These glimpses into the lives of families reveal the often competing interests of the parents, the disabled child, and the state. The influence of authoritative figures is portrayed with skillful balance as an important part of the context and development of parent movements without fully removing parental agency. Several examples are included of parents defying these forces to make what they believe is the right choice for their children with disabilities, and children with disabilities in general. Such as when parents of children with intellectual disabilities resisted institutionalization against doctor recommendations and social trends, advising other parents that doctors do not know what to do with their children and that it was “a waste of time to consult them,” (p.42). This balanced portrayal of the external factors that may influence parent activism gives a full picture of the conditions that contribute to divisions between parents and activists with disabilities.
Allies and Obstacles builds on case studies to craft an analysis that cuts across disability groups, and proposes conditions that lead to different parent organizations emerging at different times in the last century. Key tenants of disability-led movements are compared to parent-led organizations as a part of the cross-disability analysis, ultimately finding the parent-led organizations to have a “strategic mix” of positions and ideologies, often in service of specific goals rather than a single philosophy. This has resulted in mistrust, with disability-led organizations expressing some skepticism about alliance with parent-led organizations with whom they share only part of their organizational frame. Allies and Obstacles acknowledges some intractable conflicts that look unlikely to be resolved, such as disability-led movements conflicting in philosophy with some large professional organizations. In the end, the book leans to a slightly optimistic tone, pointing out opportunities for potential collaboration, with a call to action to navigate differences through ongoing conversations, to “look earnestly for ways to provide uplift for people across disabilities, races, sexualities, and socioeconomic classes” (p. 257).
The moments of potential collaboration noted above are pragmatic points of relevance for organizers and activists who are doing the work to build moments of potential into real lasting change. This book offers researchers a methodological structure for macro analysis supported by case studies. Scholars from sociology, anthropology, history, and related fields may benefit from this text as a model of how to understand large complex organizations and movements as they come to be and interact with other movements.
While some macro-analyses of social movements acknowledge but ultimately set aside differences in economic status, race, strategic preferences, and priorities among individuals and movement factions, Allies and Obstacles holds on to the subtle but important differences and braids them into the larger arguments about national organizations. In doing so, Allies and Obstacles expands the simple binary suggested in the title, and explores the ways that parents of children with disabilities have been allies, obstacles, both simultaneously, and something else entirely.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.