Allison C. Carey, Pamela Block, Richard K. Scotch. Allies and Obstacles: Disability Activism and Parents of Children with Disabilities. Philadelphia: Temple University Press, 2020. 350 pp. $34.95 (paper), ISBN 978-1-4399-1633-9.
Reviewed by Neil Dhingra (University of Maryland)
Published on H-Disability (March, 2021)
Commissioned by Iain C. Hutchison (University of Glasgow)
Looking specifically at postwar Greece, but generalizing to Europe and North America, Despo Kritsotaki has argued that the movements and organizations of parents of those with disabilities reframed disability from a private and family issue to one of public and social concern. Nevertheless, parents remained advocates and protectors of their so-called grown-up children.[1] David Kilgannon has pointed out that, in Ireland, parents’ organizations often turned to voluntary organizations rather than the state. Even this Irish context, though, is marked by both differences and similarities: self-advocacy was similarly attenuated by the image of persons with intellectual disabilities as duine le dia, or “people of God.”[2] This raises the question of whether the historical narrative of parental activism in the United States is likewise one of increased politicization and limited self-advocacy.[3] Further, we can ask if the American story is true for all forms of disability and not just intellectual disabilities. Allison C. Carey, Pamela Block, and Richard K. Scotch’s highly informative Allies and Obstacles: Disability Activism and Parents of Children with Disabilities presents four detailed historical case studies, based in part on twenty-seven interviews, and subsequent analysis that let us answer these questions.
Carey, Block, and Scotch note that the American public sphere is characterized by “neoliberalism”—a “punitive child welfare system and a meager disability system” that burdens parents who must navigate through the shoals of medicalized expertise and complicated bureaucracies (p. 9). While parents argue for a social model of disability, in which society holds responsibility for eliminating barriers, they attempt to retain autonomy from the risk of coercive public decision-making. Their attempts divide families with resources and cultural capital from those without. Further, parental autonomy also conflicts with self-advocacy, especially as it can be safeguarded by asserting the limited capabilities of those with disabilities.
The first historical case study notes that the first national organization for parents to advocate for those with intellectual disabilities, the Arc (founded in 1950), articulated its mission according to a social model of disability that focused on denied opportunities. It remained largely white and middle class and became the site of conflicts regarding the thorny issue of community integration—most clearly in the form of mandated closures of institutions, which could threaten parental authority and the right to choose from a continuum of services amid the neoliberal landscape. Carey, Block, and Scotch also note that some parents now draw on the 1990 Individuals with Disabilities Education Act (IDEA) (which has its origins in the Education for All Handicapped Children Act of 1975) to argue not for integrated education but for private disability-specific schools for their children. One parent stated that this choice led her into “a politics that I don’t feel clear on” (p. 54). The continuing tension with self-determination, as segregated settings “tend to use asymmetrical systems of power,” is obvious (p. 53).
The leading group for families with adults with diagnoses of mental illness is the National Alliance on Mental Illness (NAMI), founded in 1979, which advocates for a family role in medical policy and the ending of stigmas. NAMI’s support of consumer choice (the authors suggest “family-driven” rather than “consumer-driven” as the right descriptor) has been criticized as bound up with a neglect of class inequities. Further, the family’s role can conflict with self-determination if a family insists on involuntary treatment, an issue that came up quite recently in post-Sandy Hook legislation. The sharpest conflict, however, is within the autism community as recently founded organizations refer to a “global autism epidemic” (Autism Speaks), even as autistic activists challenge pathologizing language and practices and have formed a neurodiversity culture analogous to, if much newer than, Deaf culture. Here, Carey, Block, and Scotch recognize not only tensions but also fractures between the goals of some parents and activists.
Finally, the authors look at physical disabilities; they describe the postwar founding of the United Cerebral Palsy Association (UCP) that initially raised public awareness and funds through telethons. Like the Arc, the UCP moved toward the social model of disability and played important political and legal roles in expanding access during the 1970s. The Easterseals also sponsored telethons but similarly moved to eliminate barriers, lobbying for IDEA and the Americans with Disabilities Act (ADA) of 1990. Those telethons—perhaps most recognizably those of the Muscular Dystrophy Association and Jerry Lewis—were, and remain, controversial in their appeal to private charity motivated by the apparent tragedy and helplessness of children with disabilities. Even if raising money, even with telethons, for research and prevention is not necessarily opposed to raising community-based services, organizations inevitably prioritize one or the other. After all, we remain in an environment of scarcity.
Carey, Block, and Scotch argue that parent mobilization, such as with the Arc and UCP, began at mid-century when the expansion of resources and political opportunities combined with a sense of relative, not absolute, deprivation in the postwar economy. Parental activists could also draw on recent legal precedents, most important, the 1954 Brown v. Board of Education decision, as well as the prominent examples of public figures, such as Pearl Buck, to craft new social identities. But these organizations were based on childhood diagnoses that were family centered. Other organizations inevitably began later: autism was only listed as a medical diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980, and mental illness was not historically seen as a childhood condition. Further, even as organizations like the Arc and UCP grew and became major providers of services, other organizations started later out of frustration with the white, middle-class ethos of disability organizations. Still others were oppositional because of the aforementioned fault lines: the VOR (formerly Voice of the Retarded) was founded in 1983 to prevent deinstitutionalization. There are similar histories but not a single historical narrative.
Parents’ organizations appear to be caught up in tensions between the social model and medical model, integration and disability-specific settings, and empowerment and paternalism. But Carey, Block, and Scotch complexify the picture by suggesting no less than five configurations of the social and medical models: the Arc and UCP, for instance, emphasize the social model but also push for medical access to the health-care system. They, however, never adopt the language of Autism Speaks in seeing autism as a “thing” to be eliminated (p. 163). In yet another configuration, NAMI sees medical diagnoses as the road to social inclusion, especially as those with mental illness must combat such views as “you need to do yoga” or “pray away” mental illness (pp. 160-1). Multiple configurations also exist regarding integration as the national Arc and UCP push for integration while local branches may still run disability-specific programs. These groups also present complex positions toward self-advocacy—for instance, NAMI values self-advocacy but shies away from the psychiatric survivors’ movement.
A survey of parents’ activism notes that the “most consequential strategy” is litigation and that parents rarely engage in such protests as civil disobedience (p. 195). Like so many other things, though, the activist groups’ forms of activism resist categorization. Parents’ language tends to focus on the reality of unmet needs. One parent, Yvonne, said, “I feel that the services for people should supersede anybody’s philosophy that people should be in a certain kind of place” (pp. 201-2). The language of rights can be deployed as a tool against stigma and barriers to recognition, but, to parents, it can be double-edged if it challenges their parental authority. Yvonne mentioned that she has “believed in self-advocacy” but does not think her sons can “do that for themselves” and resents an “anti-guardian push” that “is just a way of pushing parents out of the way” (p. 211). Carey, Block, and Scotch worry about defining the necessary boundaries to paternalism: institutionalization? But the authors insightfully realize that an emphasis on negative liberty might also allow for a poorly funded “open, private, capitalist marketplace” in which everyone has the right not to be bothered by anyone else, everyone freely competes for whatever diminishing funds and services are left, and minoritized people are inevitably left out (p. 217).
A final section addresses other issues, ranging from sexuality to communication (including controversies over cochlear implants and non-ASL [American Sign Language] approaches) to the transition of children with disabilities to postsecondary education. To conclude, the authors reject binaries. Like the work of Kritsotaki and Kilgannon, Carey, Block, and Scotch note that parents suggest that disability is a public issue that demands state and government action, but they desire a privileged epistemic authority against experts and (at times) their children’s self-advocacy. Parents often use rights talk, if inconsistently, and pose them against an environment in which rights are only guaranteed for those with social and cultural capital and are often used against services as the “right” to disinvest in others. The authors suggest alternative justice-based approaches and counsel seeking alliances, so that parents and children, and families of all kinds, can work together in the strained environment.
Besides its provision of a huge amount of information, except for the suggestion that Franklin Delano Roosevelt “had a physical disability as a result of childhood polio,” this book obviously raises interesting philosophical issues (p. 40). As mentioned, the authors note that some parents claim their views should be prioritized. Is this view at all creditable? To be sure, the family cannot be considered a magical refuge from “internal power dynamics,” and we must not place a “romanticized faith in parent authority,” but when a parent says that he or she is “the only one person who sees and loves and believes in their child—their wholeness just the way they are right now”—or that he or she has been “freed into a deep acceptance for [their] daughter than felt bottomless,” does that ground an epistemic authority (pp. 16, 17, 19, 210)?
Parents are hardly infallible, can do very bad things, and need not be uniquely loving, but Raimond Gaita has argued that parental love, by virtue of customs and practice, is defined by the ideal of unconditionality. Therefore, parental love may disclose that its object is owed an unconditional respect beyond the recognition of (or even hope for) “normalcy” or human capital as a neoliberal subject.[4] One of this book’s interviewees acknowledged that his self-advocacy arose from his mother’s important role in accompanying him and appearing with him at events; we might expect that one’s self-respect may likewise arise from his or her value as first disclosed by unconditional parental love, especially in contrast to the stigmas of the status quo. These parents are presumably quite different from what Alasdair MacIntyre has called the all-too-familiar “Bad Father” and “Bad Mother” of history and literature, whose controlling familial patterns are meant to enforce “conformity to the established distribution of power” instead of foster independent practical reasoning within the familial and other networks.[5]
If self-determination entails privileging some sense of parental autonomy, Allies and Obstacles may also usefully suggest that integration and autonomy, even if generally preferable, should not serve as our final goals. Carey, Block, and Scotch note that most disability activists who support integration still acknowledge the value of Deaf education in Deaf-specific schools. Tellingly, parent organizations have a “complex and inconsistent stance toward integration versus segregation” and other such normative ideals (p. 154). In terms of evaluation, this perhaps raises questions about the desirability of overarching frameworks, such as anti-subordinationism and anti-eliminationism. For instance, the question of physician-assisted suicide would not merely be one of autonomy but would show whether “autonomous” decisions are heavily influenced by stigmas, and the question of prenatal genetic testing would query if such testing is overwhelmingly focused on disvaluing and eliminating those with certain conditions before any choice is made.[6] In other words, as one parent says in Allies and Obstacles, it may be possible for her son to “die with his rights on” (pp. 7, 219). This is to question not the importance of “rights” but their practical sufficiency.
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.[7]
Notes
[1]. Despo Kritsotaki, “Turning Private Concerns into Public Issues: Mental Retardation and the Parents’ Movement in Post-War Greece, c. 1950-80,” Journal of Social History 49, no. 4 (2016): 982-98.
[2]. David Kilgannon, “Public Attention for Private Concerns: Intellectual Disability Parents’ Organisations in the Republic of Ireland, 1955-1970,” Medical Humanities 46, no. 4 (2020): 483-91.
[3]. See James W. Trent, Inventing the Feeble Mind: A History of Mental Retardation in the United States (Berkeley: University of California Press, 2004), 242, for both the postwar increase in institutions and the parental “jaundiced eye” rightly watching over them. See also Harold C. Pollack, “Health Policy and the Community Safety Net for Individuals with Intellectual Disability,” Developmental Disabilities Research Reviews 17, no. 1 (2011): 44-51: “The immediate postwar period also marks the emergence of family caregivers as an organized constituency making specific claims on public policy” (p. 44).
[4]. Raimond Gaita, A Common Humanity: Thinking about Love and Truth and Justice (London: Routledge, 2013), 22.
[5]. Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues (Chicago: Open Court Publishing, 1999), 104-6. See also E. Frank Fitch, “Moral Philosophy, Disability, and Inclusive Education,” Philosophical Studies in Education 40 (2009): 167-77, esp. 175.
[6]. Katherine Moore, “Disabled Autonomy,” Journal of Health Care Law and Policy 22, no. 2 (2020): 245-79.
[7]. I would like to thank Joel Miller for conversation on many of these points.
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Citation:
Neil Dhingra. Review of Carey, Allison C.; Block, Pamela; Scotch, Richard K., Allies and Obstacles: Disability Activism and Parents of Children with Disabilities.
H-Disability, H-Net Reviews.
March, 2021.
URL: http://www.h-net.org/reviews/showrev.php?id=55706
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