Reviewed by Rachael A. Zubal-Ruggieri
This new book on disability and parent activism is a welcome addition to scholarly work around this important area of study. The authors are social scientists, scholars with backgrounds in sociology and anthropology, two of whom indicate they are siblings of individuals with disabilities; the third author is a long-time disability studies researcher. The authors acknowledge “the entire range of parent activism” is not covered (p. 25), and even those elements included in the text, as they note, could be examined in greater depth. While only touching the tip of the iceberg, metaphorically, then, they go on to explain that “for [their] purposes, [they] simply wish to show the breadth, variation, and vibrancy of disability activism” (p. 3)—particularly for parents.
The text focuses on four distinct disability communities: intellectual disability, psychiatric diagnoses, autism, and physical disabilities. The book has two main sections: “Disability Activist Communities” (the four distinct areas mentioned above) and “Cross-Disability Analysis” (focusing on emergent themes of the timing of parent-led organizations and movements, the framing and positioning of disability activism, public policy and social movement strategies, narratives of rights, and advocacy across the lifespan). The authors utilize case study methodology with a macro analysis (p. 6) and attempt a broad comparative approach. The text is framed by an introduction and a conclusion, and includes citations, an index, a brief appendix on the case study methodology utilized, as well as over 39 pages of endnotes.
This book demonstrates the necessity and critical importance of acknowledging and addressing the historical and contemporary tensions that exist between parents of disabled people and disabled activists. Beyond any concerns about tensions, there are often blurry boundaries about the role(s) of parents in disability activism. And, while “allies” is part of the title, there does not appear to be a discussion (in the text) of what an ally should be (or could be), regardless of whether or not the individuals involved are parents or family members—other than the thesis of the complicated dance between parents being helpful (allies) or hindrances (obstacles) in activist situations. The book’s title and the text as a whole in many ways refute the not simplistic “binary” between parents being solely allies or primarily obstacles (pp. 247-248). I must admit that I had hoped for a more overt discussion of allyship. Allyship is certainly complex—particularly the question of who might call oneself an ally (as a neurodivergent mother of an Autistic teenager, can I call myself an ally? Am I the one who is qualified to do so? Read, for example, Brown, 2012). However, even as I was finalizing this review, I can take comfort that there are other works on allyship currently emerging (for example, Carey, Ostrove, and Fannon, 2021).
It is rare for me to find a Disability Studies text that is such an effortless, comfortable read; this readability was especially important, as the book examines and analyzes a subject of great relevance to me personally—as a parent, long-time community activist, and scholar. Published by an academic press contributing to important Disability Studies work, the information covered in this volume is more than worthy of scholarly study (while being of great practical relevance and use); its true value is how adept it is for consumption by non-academic, “typical” families, and for disabled people. For example, without privileging often highly theoretical discussions of “crip time,” the authors discuss the timing in activism, particularly Kafer’s “imagined futures” (pp. 22-25), or how disabilities (and parent activism and movements) were “managed” during various moments throughout disability history.
The authors acknowledge how the use of language and terms can at times create divisions between parents and disability activists. We all must acknowledge the presence and efficacy of different terminology—even if we do not always agree with the terms being used. I have my own linguistic preferences, certainly, but I also respect how other parents might use their chosen words, as well as how disabled people might refer to themselves. I have done some rhetorical pondering of my own on how much I dislike certain words being used—particularly around autism. (I despise some of these words, in fact, so I appreciate how this topic was addressed thoughtfully in this text.)
The authors cite resources and research that I have discovered and utilize. The text also consistently affirmed my own knowledge of parent and disability activism, as I read along. So, yes, while I knew all of these “things,” it is important for everyone to know about the relationships between disability and parent activism. The text covers many subjects, such as: how, during the early years of parent activism, parents were (at times) “siloed” and separated; the inequalities that remain rampant in advocacy movements, the overwhelming lack of diversity among those who were activists in the past, and the success rates of advocacy campaigns; how parent activism has often been more successful and influential than the efforts of disabled people, themselves; the delicate nature of issues such as illusions of choice, a presumption of suffering, and proving the necessity of services and supports; the “disability cliff” (p. 7), as disabled people age out of services; how, despite activism and laws enacted, actual disabled lives might be less than ideal; the family burden of care; and parents and family members becoming de facto “experts” for their children (p. 8), all while being in turn dismissed, since they are not the “real experts.” And, of course, there is the infamous myth of the bad mother, and the issue of “parent blame”—the blaming of mothers (and parents), particularly with regard to autism. While the concept of freedom is built into our society, there is frequently not enough support present for the disabled to enjoy such freedom. There are many domains that parents have had to address, including institutions closing, appropriate health care, and educational inclusion.
The case study and chapter on “Autistic Identity and Parent Activism” interested me most, as a neurodivergent parent of an Autistic teenager, and as a long-term supporter of Autistic-led communities (Autreat, Autcom, and so forth). I am completely aware of the tensions, not only as a parent, but within my work with individuals with intellectual/developmental disabilities for over 30 years, while employed at the Center on Human Policy. I also have my own analyses, debunking the “autism mom” archetype (as alluded to, above). I can assert and confess that my professional and personal lives have been forever merged.
But, where does all of this (the case study and modern era autism parenting/activism) “land” in autism rhetoric, today? Of course, this text is not a rhetorical analysis of parent activism, but concerns such as the acknowledgement of Autism Speaks as a less than stellar organization, so contrary to authentic Autistic lives, is important. (Autism Speaks was founded by family members, but lacking in autistic representation on its board—among other concerns.) There are other aspects of autism’s history and parent activism that can be discussed, and that are complicated, such as the founding of the Autism Society of America (ASA) by a parent. Increasingly, activist-led organizations have emerged—particularly, the Autistic Self Advocacy Network (ASAN). While the concept of neurodiversity is discussed in the text, one might also acknowledge the necessity of parents learning about autistic culture, and how many Autistic advocates ask that they are not mourned for being who they are. Importantly, the chapter focuses on how much of parent activism on autism is couched in cure, biomedical discourse, and therapies and supports that autistic people (I would use “Autistic”—yes, with a capital A) have publicly decried.
Also of particular interest to me was the chapter, “Narratives of Rights.” Before I started reading, I wondered if perhaps it was about stories told from a Disability Rights standpoint. I found, instead, that this chapter examines the ways parent activists frame their activism and their own understandings of disability rights (p. 199). This issue circles back to the purpose of the text and the importance of these subjects: how activism/advocacy is often framed, and, how, due to “unmet needs,” waiting lists, lack of support services, fighting for institutional closure, and overwhelmed systems, inclusion and integration, and the discourse around rights, are frequently either understood or described as a “fight” or as necessary evils that need to be conquered. Moreover, these subjects are often at odds with disabled activists.
One of the only spaces within the text that may veer into terminology and ideology that might need a pause is “compulsory productivity”—the idea that parents and disabled activists alike need to constantly prove that disabled people are “productive” members of society. The text does indeed cover different situations, but its most important assertion is that the primary goal of parent activists is making their disabled children part of society, one that values them. However, the research has shown (and the authors share) how this orientation is yet another disability trap, and, even more so, a disability parent trap. Compulsory productivity places systems (and cultures) in a position to fight for (or, rather, to learn best) how to support disabled individuals (and, yes, their parents and families). Rather than invest time, effort, and any other resources on really understanding such individuals and making life better for them—by making queries, asking family members as well as disabled people themselves, what may or may not be best for them— there is a persistent path of resistance, from the state, from divergent parents’ movements, and from what disabled rights really might mean at any given time or in any particular space.
Nondisabled people need to face the fact that intellectually disabled, autistic, physically disabled, and mentally ill people (the foci of this text) live fluid lives. These are ever-changing identities that differ from person to person, and no amount of academic research, best efforts by the able-bodied, or other methods to make members of mainstream society more comfortable will change the fact of these nuances and differences exist among disabled people. Even now, U. S. society confounds what being disabled is—what is or is not “normal”—rather than fostering cultural pride and acceptance, despite inroads that have been made by disability activist communities. The authors note that the fraught relationships within parental activism (its “in between” status) can sometimes do more harm than good. The authors refer to how the work of parents, family members, and the disabled, themselves, is an ongoing battle to be fought: “It seems when one distorted representation is finally put to rest, another rises to take its place” (p. 106).
Thus, admitting that there is still work to be done—both necessitating disability activism and the research about it—is something significant that I recognize about the ongoing roles of parents and family members within disability activism (whether they are allies, obstacles, or both). These are indeed considerations with which I will continue to wrestle. This text is an appreciated tool, helping me to do so.
Brown, L. X. Z. (2012, March 21). Who gets to be an ally? Autistic Hoya [Blog]. Retrieved November 22, 2020 from: https://www.autistichoya.com/2012/03/who-gets-to-be-ally.html.
Carey, A., Ostrove, J. M., & Fannon, T. (Eds.). (2021). Disability alliances and allies: Opportunities and challenges [Research In Social Science and Disability (RSSD) VOL. 12]. Bingley, UK: Emerald Publishing Limited.
Title: Allies and Obstacles: Disability Activism and Parents of Children with Disabilities
Authors: Allison C. Carey, Pamela Block, and Richard K. Scotch
Publisher: Temple University Press
About the Reviewer
Rachael A. Zubal-Ruggieri is the Administrative Assistant of the Office of Interdisciplinary Programs and Outreach at the Burton Blatt Institute. Mother to an Autistic teenage son, Rachael writes and presents about neurodiversity and autism parenting, seeking to debunk and disrupt traditional representations of “the autism mom.” She is a non-traditional student in the Human Development & Family Science program at Falk College, with a Disability Studies Minor, at Syracuse University (SU). Her research interests include Creative and Design Thinking, Technical Documentation and Usability, Technology and Disability, and Parent and Family Involvement in Education. Rachael has dedicated her career to improving the lives of people with disabilities, including broad-based support to multiple disability rights initiatives on campus, in the CNY area, and nationally, through many grant-funded projects and opportunities and via long-term relationships with community agencies and programs. Rachael worked for over 30 years at the Center on Human Policy at SU. She is a founding member of the university’s undergraduate disability rights organization, the Disability Student Union (DSU). Rachael’s current activities include her roles as Co-Advisor of the Self-Advocacy Network (formerly Self-Advocates of CNY), and as a Board Member of Disabled in Action of Greater Syracuse, Inc. Rachael is also co-creator (with Diane R. Wiener) of “Cripping” the Comic Con, the first of its kind interdisciplinary and international symposium on disability and popular culture, held at SU. At conferences and as a guest lecturer, she has for many years presented on the X-Men comic books, popular culture, and disability rights and identities. She’s also a huge Batman and Deadpool fan.
Read selections from Rachael Zubal-Ruggieri’s The Micro Mutant Memoir Postcard Project and her interview in this issue of Wordgathering. Rachael was also previously interviewed in December 2013 issue of Wordgathering.