American Action Fund for Blind Children and Adults
Future Reflections Special Issue: COVID and Beyond REVIEWS
by Allison C. Carey, Pamela Block, and Richard K. Scotch
Reviewed by Carlton Anne Cook Walker
Allies and Obstacles: Disability Activism and Parents of Children with Disabilities
by Allison C. Carey, Pamela Block, and Richard K. Scotch
Temple University Press, 2020
348 pages
ISBN: 978-1439916322
Available in hardcover, paperback, and Kindle editions
Available from Amazon at
https://www.amazon.com/aLLIES-oBSTACLES-dISABILITY-aCTIVISM-dISABILITIES/DP/1439916322
Available from www.bookshare.org
Allison C. Carey, Pamela Block, and Richard K. Scotch explore an often-overlooked facet of advocacy in the disability field: the role of parents of individuals with disabilities. On the individual level, a parent's inclination to engage in advocacy varies greatly, as does the manner, if any, in which that parent pursues advocacy. Allies and Obstacles examines how parental involvement in their own children's lives and in disability-wide advocacy has impacted and continues to impact disability rights advocacy in the United States.
Allies and Obstacles takes a three-part approach to this examination. Through a thirty-page introduction, case studies in Part One, and a thorough analysis of parental advocacy across disabilities in Part Two, the authors provide an excellent resource for parents and adult disability activists to help each understand more about the other.
First, the authors provide an extensive introduction to their work. The introduction guides us through a brief history of the rise of organized parental activism with regard to their children with disabilities. It recounts the early parental advocacy that secured educational and civil rights for children and adults with disabilities, but it also acknowledges that "Parent activists have a complicated relationship with disability activism and disabled activists." The authors illustrate how overwhelmed parents sometimes have sought support by describing the burdens of raising a child with disabilities. Such pleas are offensive to disabled activists, who take umbrage at being described as burdens. In these cases both sides want change, but neither side feels honored or respected by the other. The introduction provides a foundation for understanding the medical and social models of disability as well as language preferences (person-first versus disability-first or identity-first). It also addresses the ways that systemic biases related to race, gender, and socioeconomic status have affected the disability-rights movement, especially in the parental sphere.
In Part One, the authors take a deep dive into parent activism in each of four areas: intellectual disability, psychiatric diagnosis and disability, autistic identity, and physical disabilities (excluding blindness, deafness, and chronic illness, as noted by the authors in the introduction). In these case studies, the authors document the history of the treatment of individuals with each disability in the United States, the rise of self-advocacy and parent activism in each disability, and the impact of nondisabled professionals and institutions on individuals and their families.
In Part Two, the authors provide insight into the significant differences in the roles of parent activists in different disability areas, and they explore possible reasons for these differences. Throughout their analysis, they note the degree to which parental activism aligns with the positions of self-advocates in each disability area. While blindness was not part of the case studies in Part One, the authors highlight the National Organization of Parents of Blind Children (NOPBC) as "an organization that primarily uses a social model and demedicalized frame." They point out that, as an integrated division of the National Federation of the Blind (NFB), the NOPBC is rooted in a social movement led by blind adults. This movement focuses on fighting low expectations and discrimination and providing blind people of all ages with knowledge about and access to blindness skills and tools.
Should parents of blind/low vision children read Allies and Obstacles? My answer is an emphatic "Yes." While the book's case studies focus on intellectual disability, psychiatric-related disability, and autism disability activist communities, understanding the history of the interaction between self-advocacy and parental activism can be very instructive for parents of blind children. As a preliminary matter, disabilities are not mutually exclusive. Many blind children have additional disabilities, and many of their parents look toward these disability activist communities for information and support. Furthermore, we parents can learn a great deal from the experiences of other parents and from adults with disabilities. I have been a parent advocate for more than fifteen years, primarily in the blindness field, and I found this book to be an excellent resource on parental disability activism in general.
If I have one complaint about Allies and Obstacles, it is that I want more. I want case studies and in-depth analysis on disability activism in blindness, deafness, and deafblindness, particularly with regard to the manner in which institutions and nondisabled professionals influence parental views of disability as well as the growth of self-advocacy in each disability area. I also want to expand the authors' rigorous review of historical and current data into a broad-based inquiry of disability activism and the extent to which it does (or does not) include individuals with concurrent disabilities. I know many individuals with more than one disability, and I have observed the adverse effects of "siloing" each disability—providing instruction and accommodations based on each disability in isolation instead of supporting the whole individual. Disability activists cannot be experts in all areas, but we can and should be welcoming and supportive to each member of our community without regard to additional disability, race, gender, age, sexual orientation, socioeconomic status, or any other characteristic.
In addition to Allies and Obstacles, I urge parents to read Building the Lives We Want. This ebook, available online at: https://nfb.org/about-us/history-and-governance/building-lives-we-want, is an engaging tome that guides its readers through the history of blindness activism, including the establishment of the NFB in 1940 and the NOPBC in 1983. Building the Lives We Want continues our journey through 2015, the seventy-fifth anniversary of the NFB's founding.