Jan Nisbet and Nancy WeissDec 2, 2021
Pain and Shock in America
Politics, Advocacy, and the Controversial Treatment of People with Disabilities
Brandeis University Press 2021
Amid a string of fall 2021 news reports about past-due exonerations and (white) self-defense that document the limits of racial justice within the U.S. legal system, Pain and Shock in America: Politics, Advocacy, and the Controversial Treatment of People with Disabilities (Brandeis University Press, 2021) becomes an even more relevant and timely book. Dr. Jan Nisbet, who authored the book with contributions from Nancy Weiss, introduces it succinctly: “The story is long, complicated, and filled with questions about society and its ability to care about, protect, and support the most vulnerable citizens. It is a story that calls into question the degree to which people who do not have disabilities can separate themselves from those who do, allowing painful interventions that they themselves would not likely tolerate” (2021, p. 8). If justice is central to evaluations of the social policies and public institutions charged with administering it, disability–as core issue theorized in philosophies of justice–must be centered as well (Putnam et al., 2019).
To this end, Pain and Shock in America “intentionally highlights the hard-fought battles of disabled survivors like Jennifer Msumba and disabled-led advocacy organizations like the Autistic Self-Advocacy Network,” as “disabled self-advocates (who also happen to be lawyers)” (Nisbet 2021, p. vii-viii) Shain M. Neumeier and Lydia X.Z. Brown write in the Foreword––themselves appearing in the book as leaders with critical roles. The volume chronicles a nearly half-century saga involving the law, education, psychology, and medical fields as they converge in methods and culture of The Judge Rotenberg Center, a privately-run facility in Massachusetts which, despite six student deaths and consistent frequent citations for abuse and neglect, has been funded by taxpayers from about a dozen states and our nation’s capital as a placement for students with disabilities. Though its use of a self-made electric shock device makes the Judge Rotenberg Center unique in the country and perhaps the world, its institutional history provides a broader if extreme “lens through which we can understand the societal issues facing people with disabilities and their families” (Nisbet 2021, p. 10).
Pain and Shock in America will appeal to readers interested in understanding the current and historical institutionalized sanctioning of interlocking systems of oppression (for further reference on this phrase, consult the work of Dr. Patricia Hill Collins, the foundational scholar and practitioner in education and sociology (and an alumnus of Brandeis University)). The book archives how certain (abled white male) individuals, privileged through their education and credentials amongst other forms of social capital, are consistently upheld as agential authorities over others–most crucially, those identified as disabled children–who are objectified within the legal, educational, and medical systems according to their intersectionality (Professor Kimberlé Crenshaw’s cornerstone concept from the legal studies literature in 1991).
While the book is of clear relevance to people interested in disability studies, inclusive education, critical special education, clinical psychology, and Applied Behavior Analysis (ABA), it also offers an important resource for DisCrit scholars and those folks looking for some historical background and intersectional theorizations of race, ability, and gender in these often a-historical, under-theorized applied fields (for further reference, consult the extensive and original work of Dr. Subini Annamma). Nisbet and Weiss cite multiple sources showing that today, the majority of the population enrolled at The Judge Rotenberg Center (JRC) are multiply-marginalized youth and adults, meaning they are people of color with backgrounds in the foster care, penal, mental health systems, who also have been found eligible for “special education” under the law. They may have come to JRC through its various recruitment strategies, which have ranged from playing radio ads on the hiphop station, Hot 97 FM, to transferring youth directly from the defunct-yet-operational Rikers Island jail/penitentiary system. In addition to other draconian methods legitimized in federally-mandated Individualized Education Plans at JRC, the use of a four-point restraint board to subject residents to physical blows and forced nudity is, in my opinion, nothing less than an indicator patriarchal rape culture.
The plot captured in Nisbet’s historical case study is thick. It begins in 1970, when a failed commune leader and Harvard-educated psychologist ran a federally-funded program in Rhode Island, in a state orphanage rife with emotional, physical, and sexual abuse perpetrated by the staff all the way through to high-level administrators. In this interview, we compare the rising political influence of disabled self-advocates to the “ruling professionals” (Lou Brown on the disability advocacy organization TASH in the 1990s, as quoted in Nisbet, 2021, p. 24) of the last few decades whose use of “the medical metaphor” (E.M. Opton in 1975, as quoted in Nisebet 2021, p. 25) shaped public perception and educational discourse on disability; we’ll discuss how civil rights for children with disabilities unfolded alongside a lack of inclusive educational options for them; and how parental advocacy, the legal system, and the executive branches at the state and federal levels have legitimized practices based in archaic and outlawed research that the United Nations has condemned as torture.
Jan Nisbet is professor emeritus at the University of New Hampshire, where she served for ten years as the senior vice provost for research. Before assuming that position, she was the founding director of the Institute on Disability and professor in the Department of Education. She has been principal investigator on many state- and nationally-funded projects related to children and adults with disabilities.
Nancy R. Weiss is a faculty member and the Director of the National Leadership Consortium on Developmental Disabilities at the University of Delaware. She is the former Executive Director of TASH, an international advocacy association committed to the full inclusion of people with disabilities. She has more than forty years of experience in the field of intellectual and developmental disabilities and has worked extensively providing community living and positive behavioral supports.
Christina A. Bosch is an assistant professor of special education in the Literacy, Early, Bilingual and Special Education Department of the Kremen School of Education and Human Development at California State University Fresno; on Twitter as @DocCABosch