The Work of Inclusion

Disability theology, like many theologies that emerge from underrepresented contexts, raises challenging and ongoing questions about who is allowed to contribute and to what extent. What makes disability distinct from other identity lenses such as race, gender, or sexuality is how academic structures continue to widely marginalize—even delegitimize—disabled communities, particularly those with intellectual and developmental disabilities (IDD). In The Work of Inclusion: An Ethnography of Grace, Sin, and Intellectual Disabilities, Lorraine Cuddeback-Gedeon cites this as one of several obstacles that IDD communities face and swiftly guides us through the extensive historical and systemic reasons why these obstacles persist. Using ethnographic research, Cuddeback-Gedeon attempts to bridge the gap between disabled communities and the scholarship that aims to represent them. Cuddeback-Gedeon urges scholars to not merely discuss people with IDD from a distance but to, instead, generate and enhance disability discourse alongside IDD communities as prominent and essential conversation partners (2).

For Cuddeback-Gedeon, ethnography is a constructive methodology for those seeking solidarity and orthopraxis with disabled communities because it prioritizes embodied experience and invokes profound forms of accountability and reflexivity (12-13). Identifying as a nondisabled ally, she recognizes that this research is not merely an academic undertaking; it is an opportunity for individuals and churches alike to engage in theological and critical self-examination (9). After chronicling the history of the complex and evolving definition of IDD—including the common use of antiquated and offensive language—Cuddeback-Gedeon posits grace and sin as theological lenses through which to interpret the IDD community (16). The breadth of these concepts enables us to find them in religious and secular spaces, both of which, as Cuddeback-Gedeon’s research demonstrates, are fertile grounds for theological insight.

One of the major themes throughout Cuddeback-Gedeon’s work is the acute reminder that ideological and material differences exist between inclusion and integration (43). While inclusion for some is synonymous with full integration into a singular shared space (i.e. a seat at the table), viewing these two terms as congruous is often inadequate for many people with disabilities. Despite the arguments of many “postliberal” theologians, being invited to a table, classroom, or job—where certain language, behaviors, and lack of accommodations are still assumed—is not enough. Even within disabled communities there is a vast range of competing needs and wants, and as the merits of unique diagnoses, individual education plans, and personal caretakers become increasingly evident, the question of whether broad-based solidarity is even possible begins to surface (50).

Cuddeback-Gedeon responds to this concern with a resounding yes, asserting that the variation within disabled communities is a difference of degree and not a difference of kind (74). This difference of degree is not exclusive to people with IDD; it also applies to the families, guardians, staff, and institutions who have crucial roles in disabled communities (78). Though power differentials still exist, it is only through acknowledging these interdependent relationships that the goals of inclusion and agency can become realities among IDD communities and that disability justice can be enacted. Disability justice stretches beyond correcting the law and obtaining rights for people with disabilities; it is contingent not on independence or autonomy, but on pillars such as interdependence and collective liberation (73). Not only does this allow for more fluidity between fully integrative and disabled-only spaces, but it also focuses attention on preserving human dignity and promoting human flourishing for all (95).

Examples of such human flourishing are illustrated through ample moments of grace observed by Cuddeback-Gedeon at Payton, the institutional subject of her ethnographic findings. Payton serves many functions for members of the IDD community, namely a recreation center, a factory, and a home. Although Payton fosters familiarity and security, Cuddeback-Gedeon notes that moments of grace take place against a backdrop of structural sins, most notably the sin of normalcy (130). Normalcy comprises a structure of social power that disadvantages and harms people who deviate from what is deemed “normal.” Once again, Cuddeback-Gedeon rightly alludes to interdependence, stating that “normalcy shapes not only the clients’ lives and the projects they can pursue but also dictates the value of human labor that supports clients’ lives and projects” (141). Yet, even within the systemic layers of normalcy, people with IDD cannot be written off as inherently sinful or innocent, nor can they be excused from personal sin (125). As Cuddeback-Gedeon experiences firsthand, people with IDD have agency to create their own “hidden transcripts” where resistance and complicity are both palpable actions (135). This is the inevitable risk that accompanies liberation: it enables agency, which in turn makes sin and its profuse impact possible. By confronting these unpredictable realities, Cuddeback-Gedeon believes we can begin to resist both social and personal sin and choose alternative paths toward grace (151).

The conversations, anecdotes, and backstories from Cuddeback-Gedeon’s time at Payton capture the complex, intersecting realities of the day-to-day lives of IDD communities. As I read them, I was reminded of my own experiences as a caretaker, chaplain, and researcher in hospital rooms and group homes for disabled persons. I have worked with staff members and families who, despite being able and willing, are limited by wages, budgets, and turnover, and I can confirm the difficulties that come from being a woman of color in a job market that is heavily gendered and racialized. Still, my background does not exempt me from the feelings of discomfort and guilt that Cuddeback-Gedeon’s research provokes. The long unedited interview quotes, the history of cruel disability language, and Cuddeback-Gedeon’s own awkward confrontation with a client should give nondisabled readers pause to reflect on the pervasive nature of normalcy.

Moreover, I am left with more questions than answers, not because of what the book lacks, but because of my personal curiosity and hope for the Payton community: How have they managed through the pandemic? What has the state done to support them? Did Tim, one of the IDD clients at Payton, ever get another job interview? These questions arise because Cuddeback-Gedeon’s use of ethnography encourages us to develop genuine empathy and substantively invest in IDD communities, pushing churches and academics alike to take a proactive stance and, perhaps most importantly, name people with IDD as teachers and ministers themselves (161). Furthermore, this text cannot be yet another conversation about disabled people between nondisabled people. Rather, it is a starting point for disabled and nondisabled scholars to meaningfully elevate cultivations of grace in disability, allowing for deeper understanding and solidarity within and beyond disabled communities.

Maci Sepp is the associate director of recruitment at Princeton Theological Seminary.

Maci Sepp

Date Of Review:

February 24, 2024