Reviewed by Rachael A. Zubal-Ruggieri
There is a long history of parents and families advocating for their disabled children. Block, Carey, and Scotch previously shared a portion of this history, particularly the tensions between parents and families and disability activists, in their book, Allies and Obstacles: Disability Activism and Parents of Children with Disabilities,
This second, follow-up volume, Family and Disability Activism: Beyond Allies and Obstacles, is a logical shift from intensive studies within four specific disability communities to intersectional, cross-disability, first-person narratives, “elevating the voices of activists” (p. 1) by multiply marginalized individuals not previously featured or widely promoted in scholarly literature. The text is a response to “calls for greater representation of marginalized populations” in disability activist spaces and adds upon important conversations on the subject of families, disability, and activity. Focusing on new populations as well as intersectionality “expands contributions to scholarship of the family, rights, and social movements” (p. 3), contrary to narratives that have typically featured white, heterosexual upper-class families.
This volume provides additional perspectives that bolster how “family activism cannot be reduced to one side, or even both sides, of an ally/obstacle dichotomy” (p. 3); the complexity of BIPOC, LGBTQIA2S+ and other diverse identities are front and center. Notably, the contributors demonstrate how differently
…people of different backgrounds understand care and rights; confront systemic issues of segregation, institutionalization, and access to special education services depending on ethnic and racial identities; create narratives of rights versus justice; and experience tensions and connections between parents and disabled activists (p. 2).
Previously underexplored topics are important, including power struggles between families and disabled people, the unique tensions intersectional identities bring to disability activism, and examples of families who center disabled individuals within their advocacy in a positive way.
The contributors, many of whom are both activists and academics, underscore how support and care efforts often work together and/or against each other, depending on the multiplicity of situations. Contributors hail from various minority racial identities (including Asian American, Latina/x, Indigenous, Black, and mixed-race), disability identities (Autistic, Deaf, blind, Deafblind, and complex medical conditions), as well as cultures (often closely associated with race or ethnicity), gender and gender identities, and age (notably, “aging” out of care systems and the planning involved to support disabled children as they reach adulthood is addressed).
Chapter 1 is written by Grace Tsao, a disabled Asian American who is involved in social justice. They recount the forgotten activism and hidden histories within and from Asian cultures as well as the complicated and fraught attitudes toward disability in Asian communities. Compounding their circumstances, stereotypes and tropes are discussed, including Asians being perceived in mainstream contexts as members of the “model” minority or allegedly acting (or being expected to act or present) as silent and invisible. Tsao also reminds readers that minority communities are often in conflict with each other, warning, “we are all oppressed by the same agents” (p. 13). Tsao further asserts, “…marginalized communities need to unite and build coalitions to fight” (p. 13). Different minority and disability communities cannot make progress if they are too busy fighting each other, according to Tsao.
Lisette E. Torres, author of Chapter 2, is a disabled Latina scientist and scholar activist who discusses cross-generational factors (as her family has more than one disabled family member) and how disability is often perceived in Latinx culture. Such experiences and attitudes influenced her “to engage in activism with [other] disabled Latinx people” (p. 7).
Chapter 3 is written by Jaclyn Ellis, an Autistic indigenous Ph.D. candidate and transracial adoptee who uses visual art to explore their relationships with both their birth and adoptive families, particularly within a “Canadian colonial context” (p. 39).
Bridget Liang, author of Chapter 4, is a Ph.D candidate who identifies as a mixed race, trans, queer disabled person. They recount their personal history, primarily the complicated relationship with their parents who made decisions that went against their wishes, resulting in PTSD. Liang shares how they have found more acceptance and support in the LGBTQ community versus the autistic community (which Laing asserts is often “controlled” by the medical establishment and parents).
Author of Chapter 5, Jenelle Rouse, is a Black culturally Deaf dance artist and nontraditional researcher. As a child, she faced the decision whether or not to get cochlear implants and how her parents respected her autonomy to make her own choice, affecting the impact this choice and other decisions have had in her life and activism.
Cheryl Najarian Souza, author of Chapter 6, is a scholar and academic whose research explores the differences in how families of Deaf, blind, and Deafblind children interact; many parents of Deafblind children cannot find appropriate information and support and are often “stuck” between Deaf and blind communities.
Pamela Block, Chapter 7 author and the co-editor of Family and Disability Activism, is an academic whose work traces the historical contexts of how children with complex medical conditions (specifically, disabled polio survivors) were and continue to be “understood and discussed” (p. 7) during the 20th and 21st centuries. Block recounts that the U.S. had to deal with an influx of disabled people and how changes in practice (namely, the use of technology to extend lives) had not yet been reflected in policy changes, thereby endangering disabled people’s lives.
Chapter 8 is authored by several parents offering a follow up to Block’s chapter, as they discuss the story of Little Lobbyists, a “family-led non-profit organization that advocates for the needs of medically complex and disabled children” (p. 125). Little Lobbyists is unique, as the organization “reflects the values of disabled activists and acts in concert with them” (p. 7), understanding the necessity of control and choice as their medically complex children face adulthood.
The last chapter is by a parent-child duo. Erin Compton is a self-advocate who, along with her mother, Diane, discusses the importance of self-advocacy, self-determination, supported decision-making, and other issues important for individuals with intellectual disabilities. Together they caution against the blanket use of guardianship versus supporting children to make decisions/choices on their own as they become adults.
Factored within and throughout the narratives are other issues including “alternative systems of mutual aid” (p. 4) and interdependence, kinship (adoptive, “found family,” queer, cross-racial/cultural), the often gendered nature of care (most care work has traditionally been provided by mothers and women), the importance of Disability Justice, and much more. Also considered are family members other than parents (siblings, stepsiblings, foster parents, adoptive families), children taking care of disabled parents, and other less mainstream while important identities and family constellations.
These narratives are important, and such perspectives and experiences are rarely shared in larger disability communities. But a content warning is warranted here: not all of the contributors’ and their families’ experiences or findings came easily. Some authors have had to deal not only with cultural factors, they sometimes dealt with tensions and discord within disability organizations; many of these organizations are those that are well established, parent-led, or rooted in pathology. Not all family relationships are positive either. As a Neurodivergent parent to an Autistic son, I can attest that some stories were difficult to read. I also perceive these stories/narratives as manifestos of a sort that deserve a wider audience.
Parent engagement and involvement already have varying levels of exposure in scholarly literature, but children’s points of view, whether or not they are adults, are almost never shared in wider circles. Advocacy for parents and family members who are members of minority communities is far more nuanced. It is rare to learn what happens when disabled children “age out” of school and become citizens. Often referred to as the “disability cliff,” experiences and services for disabled adults are bereft of parent/family support; thus, services are harder to come by and utilize. Even when the subject of disability within families is studied or examined closely, it is often through the lens of able-bodied people.
The book is also composed of different narrative types and constructs. Some approaches combine anecdotes with studies, while others engage with alternative methodologies. For example, one chapter is an “‘autie’ ethnographic exploration.” In another, autoethnography is informed by “LatDisCit1 and intersectionality.” Still others feature authors in conversation with each other or their parents. Some chapters offer abbreviated segments of research studies, and others feature figures and charts.
Each of the book’s contributions build upon the literature concerning parents and families in ways that have not been previously explored. The introduction explains much of the book’s purpose and focus and is available to download on the publisher’s website. Also available is a reading guide offering discussion points and an alternative and accessible way to explore the book’s content.
The contributions in Family and Disability Activism emphasize the unique experiences that different social, racial, and ethnic identities have upon advocacy and activism. As the editors share, “There are still many more stories to tell about disability, kinship, and activism, and we are excited to contribute this volume to this vital, ongoing conversation” (p. 8). Block, Carey, and Scotch have more than adequately pointed everyone in the right direction as well as provided a roadmap for future stories of families and disability activism yet to be told.
Note
- LatDisCrit is “a mode of counterstorytelling about disability, race, and Latinx identities. It brings together the literatures of Latinx critical legal theory (LatCrit) and disability critical race theory (DisCrit), and its driving aims are emancipatory” (Padilla, 2023, p. 84).
Reference
Padilla, A. (2023). LatDisCrit and counterstories. In M. Mills & R. Sanchez (Eds.), Crip authorship: Disability as method (pp. 84-90). New York: NYU Press. https://www.jstor.org/stable/jj.13944206.11
Title: Family and Disability Activism: Beyond Allies and Obstacles
Editors: Pamela Block, Alison C. Carey, and Richard K. Scotch
Publisher: Temple University Press
Date: 2025
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About the Reviewer
Rachael A. Zubal-Ruggieri (she/her/hers, they/them/theirs) is a long-time employee at Syracuse University. She is Assistant Editor of Wordgathering: A Journal of Disability Poetry and Literature and Managing Editor for Nine Mile Arts & Literary Magazine. She co-created (with Diane R. Wiener) “Cripping” the Comic Con, the first of its kind interdisciplinary and international symposium on disability and popular culture, previously held at SU. At conferences and as a guest lecturer for many years, Rachael has presented on the X-Men comic books, popular culture, and disability rights and identities from her perspective as a Neurodivergent person and as a Mad Queer Crip. Entries in their “Micro Mutant Postcard Project (MMP),” as well as other prose, have been published in Wordgathering. Other MMP entries have been published in Stone of Madness, Sabr Tooth Tiger Magazine and the Coin-Operated Press Tea Zine. Their most recent publications include two articles (co-authored with Diane R. Wiener) in the Journal of Literary & Cultural Disability Studies‘ Special Issue, “Cripping Graphic Medicine I: Negotiating Empathy and the Lived Experiences of Disability in and through Comics” (Volume 17, Issue 3), and a forthcoming book chapter (co-authored with Diane R. Wiener) in the Palgrave Handbook of Disability in Comics and Graphic Narratives.