Sandy Sufian delivered one of the keynotes at the 2016 Chicago meeting of the International Standing Conference for the History of Education (ISCHE), where the theme, the Education of the Body, encouraged presenters to consider how a focus on the body offered new perspectives on the development of educational patterns and institutions, how difference has historically been created between different bodies, and how different bodies have moved and have been shaped to move in the history of education.
Disability was a prominent theme of the conference, following on the 2012 ISCHE conference in Geneva that was co-sponsored by the Disability History Association. (At the 2016 Chicago conference, Kristen Chmielewski's paper on the persecution of early twentieth-century New York City teachers who were identified as disabled was later awarded the ISCHE Early Career Conference Paper Award.) Sufian's final keynote centered on the role of disability in adoption practices.
I was thus eager to read a book of hers expanding on that talk. Sufian, a professor of health humanities and history in the Department of Medical Education at the University of Illinois Chicago (UIC) School of Medicine and of disability studies at the UIC Department of Disability and Human Development, holds a doctoral degree in history and a master of public health in epidemiology and biostatistics. She writes and teaches in the fields of history of medicine, global health, and disability history, and is past president of the Disability History Association. Sufian is in many ways an exemplar of the relatively new field of disability history in that she focuses on both the medical and the social, and applies a critical disability lens through which she, as Jason Ellis and I wrote in our special August 2020 issue of HEQ on new approaches to disability history examines “how historical currents have shaped and formed different meanings for disabilities in different periods.”Footnote 1
Sufian's book is an expansive study of disability and American adoption policies and practices since the mid-twentieth century. The work is of interest to historians of education in part because of the way that Sufian shows that dominant concepts of disability in the adoption context map onto educational policy and practice. Adoption policies, like education policies, are influenced by dominant cultural conceptions of normality, family, and health, and sit at the intersection of different professional networks of social work and education, relying on psychologically based assessment strategies. And adoption policies, like education policies, are intertwined with state and federal regulations. While tracking the developing dynamics of modern American adoption policy, Sufian, like all good critical social historians of disability, asks readers to think deeply about social and emotional expressions of “normality” in conceptions of the American family.
The general chronological narrative of the book begins with the exclusionary practices of eugenics-influenced child welfare policies in the first half of the twentieth century, when a disabled child was considered a significant risk to prospective adoptive families. The post-World War II era saw some limited advancements, as social worker and adoption professionals gradually enlarged their conception of adoptable children by encouraging prospective adoptive families to accept a reasonable risk in the experience. What Sufian calls the narrative of “risk equivalence” (p. 70) led into what she and other disability scholars call the “overcoming narrative”—the popular inspirational narrative about people with disabilities of love and acceptance, resilience, resourcefulness, and courage. As with the overcoming narratives about President Franklin Roosevelt's polio, disabled adoptive children were positioned as a problem that could be overcome by loving and inspirational families. Reinforcing this narrative was the rise of a therapeutic ethic in social work and the concept in various educational policies of the remediation of problems. The concept of “special needs” flourished under this narrative, as did, in adoption services, the distinction between children with “severe” disabilities and those whose disabilities could be mediated or “cured.” The 1980s marked another turning point, in part owing to the decline of federal supports for family services and the rise in the numbers of children in need because of increasing cases of drug addiction, HIV/AIDS, and incarceration rates of women. In addition, we see a parallel story of foster care, which itself becomes a player in the developing “at risk” status of children with disabilities, owing to a ballooning foster care system and declining resources. Also at play is what Sufian calls “an overlay of consumerist discourses about children” (p. 193), in which medical technology informed decisions about the birth and treatment of children with identified disabilities.
In all cases, even as adoption policies and practices became more inclusive in the late twentieth century, they maintained what disability scholars call the “medical model” of disability, in which disabled children are seen as being a burden or a tragedy, and an individual problem to be solved or rejected. Children with disabilities remained a “risk” for normative concepts of families.
In a powerful epilogue, Sufian draws on the late (and often considered founding) disability historian Paul Longmore's concept of disability history offering a “usable past to create accessible futures for people with disabilities” (p. 226). Sufian applies her historical findings to contemporary practices and conceptions of disability and adoption. Here she highlights the continued dominance of ableist notions of family and the need to extend discussions about disability and adoption beyond the personal sphere to broader social and political responsibility, as well as to combat ongoing social stigmas against both adoption and disability. Also central to Sufian's call is the role of personal stories, drawing on the term “disability analytic” (p. 22), which always considers the multiple interests of, and impacts upon, people with disabilities. Sufian draws on personal narratives in the forms of memoirs and testimonies as much as possible in her research, and she stresses the important role of such practices in changing the conversation so we learn about the experiences of children with disabilities and adoptive families directly from those individuals. Families’ and adoptees’ lived experiences and their self-representation add core meanings to policy debates (p. 234).
Sufian's book about adoption and disability teaches the reader about how disability operates as a fundamental category in the making of the American family, and in dominant concepts of health, wellness, and normality—topics that educational historians have long analyzed with the markers of gender, race, and class. As Sufian shows that definitions of health and disability have played a central role in determining the extent to which a child could live in a family, so too should educational historians reflect on the significance of those identities, and social discourses around those identities, in the shaping and maintenance of schools. Who is eligible for schooling and what is the scope of that eligibility? Who is considered to be “at risk,” and what practices and policies are attached to that designation? Why do some differences trigger the “at risk” label and others don't? And why, ultimately, does a designated “problem” belong to the child and not to the society in which the child lives?
