Lorraine Cuddeback-Gedeon offers a theological reflection on her ethnographic work with persons with intellectual and developmental disabilities (IDD) in a sheltered workshop in Indiana, to which she refers by the pseudonym Payton Workshop. Noting that there is a rich and growing body of theological work on disability by persons with various forms of disability other than IDD, and by caregivers, family, and friends of persons with IDD, the author strives with this book to bring the voices of persons with IDD themselves into the theological conversation more directly. Cuddeback-Gedeon defines her task as a liberationist one and throughout the book distinguishes her approach from postliberal theological treatments of IDD and their indictments of the disability rights movement as too focused on personal autonomy and little concerned with relationship and community. While Cuddeback-Gedeon appreciates the focus on friendship and community in this literature, she argues that her ethnographic work with persons within the IDD community surfaces understandings of autonomy that can coexist with dependence and interdependence, relationship, community, and friendship. Further, she worries this postliberal disdain for rights language obscures the essential work of addressing social and economic injustices affecting persons with disabilities and their caregivers.
Chapter 1, “We Speak for Them: Payton and the Parent Movement,” offers an enlightening history of social attitudes and practices toward persons with IDD, beginning with the era of eugenics through the emergence in the mid-twentieth century of the Parent Movement, which advocated for deinstitutionalization, inclusion, and education/training. Chapter 2, “We Speak for Ourselves: Self-Advocacy, Autonomy, and Flourishing,” continues delineating the context of her ethnography with a historical overview of the self-advocacy movement and argues, contra her postliberal interlocutors, that concepts such as autonomy, subjectivity, and agency are relevant and important for persons with even severe forms of IDD. Chapter 3, “Speaking to Each Other: Dependency, Care Work, and Grace,” delves more deeply into questions of autonomy and the fundamental role of dependency for all human beings. The author argues strongly for solidarity with caregivers, noting the economic precarity of their lives and lack of resources devoted to formation and ongoing professional development for this work. She argues that theologies which call (nondisabled) Christians into personal friendship and (nonpaid) relationships of care with persons with IDD run the risk of downplaying the essential role of paid caregivers, the deep emotional connections they often form with their clients, and the duty to attend to social and economic justice for caregivers and persons with disabilities alike. This concern leads to Chapter 4, “Difficult Conversations,” which hones in on the subject of sin, the social, structural sin that affects the lives of persons with IDD and their caregivers, as well as the importance of avoiding a sentimental or paternalistic disregard for the agency of persons with IDD that would elide their own personal sins and responsibility for them. Finally, the book ends with a conclusion calling for a much more proactive approach to full inclusion of persons with IDD on the part of Christian churches.
Cuddeback-Gedeon’s use of her ethnographic data to elucidate what agency, autonomy, community, and flourishing can look like in the lives of persons with IDD is effective and illuminating. I appreciate her strong and consistent attention to the social, economic, and political injustices that constrain this flourishing and her call to solidarity with persons with IDD and their caregivers in the pursuit of better public policy. The author is less clear in her treatment of grace. Basing her understanding on Elizabeth Dreyer’s description of grace, Cuddeback-Gedeon at times emphasizes that grace comes from God and that we can notice and name its presence in the flourishing of persons with IDD and in the realization of greater justice for them and their caregivers. At other times, however, she seems to strictly identify grace with human flourishing and justice and speaks of “struggling for grace” (130) or the call to “pursue grace” (153), as if grace were something we could achieve.
This book would be a valuable pick for upper-level undergraduate and graduate courses on theology of disability. Chapters could be assigned in more general liberation theology and theological anthropology courses, and it is suitable for general audiences interested in disability studies.
