Ethnographical research in disability studies is growing in popularity. Ethnography allows researchers to immerse themselves in a particular culture in order to get to know people’s experiences. This method appeals to the turn to lived experience, and it gives a place to researchers who might otherwise be excluded from critical disability studies on the grounds of not being disabled and therefore not in a position to speak on behalf of the disabled. Moreover, for those who regard disability as a social construct, ethnography enables researchers to reflect on the asymmetries of the power relationships involved in social structures and agency. Cuddeback-Gedeon’s book and her adherence to liberation theology fit very much into this research context. Based on her doctoral research, The Work of Inclusion builds on fieldwork in the form of observation, and interviews with staff, clients, and family members. She conducted with the ‘Payton’ community, the author’s pseudonym for a sheltered factory workshop, part of a centre offering paid work and recreation opportunities for people with intellectual disabilities in the USA. Steeped in liberation theology, Cuddeback-Gedeon undertook her research by becoming embedded into the community as a volunteer, and by ‘listening’ with the aim of uncovering ‘patterns of grace and sin’ as seen and experienced by this specific disabled community. One of her goals is to fill the gap between theologies of disability written by caregivers and the ‘muted’ disabled voices of those with intellectual disabilities, and so she uses material from disability studies and ethnography to think theologically about Payton. Moreover, she regards this ‘posture of listening’ as a ‘necessary task for our churches to become spaces that represent every part of the multifaceted Body of Christ’.
Cuddeback-Gedeon takes an unapologetically liberation theology approach to disability. Although at times the book gives the impression that liberation theology is the only fruitful form of discourse in theologies of disability, Cuddeback-Gedeon engages reflectively with the strengths and weaknesses of her approach. She acknowledges that her participants are ‘high-functioning’, yet states that this can ‘open a space’ for people with profound intellectual disabilities. She hints that her observational research and interview techniques may not fully protect her from being an outsider. She is aware of the inherent difficulty of wanting to engage with participants and hear their experiences when how to hear people with intellectual disabilities is complex and inevitably influenced by the researcher’s own privilege and biases. To preserve her ethnographic research from becoming a ‘pornographic’ account or instrumentalizing people, Cuddeback-Gedeon reflects on her own presumption and bias, and on accountability to her participants as collaborators.
Still, there is a question over this collaboration. Moreover, her sense of accountability in telling the story of others where the nondisabled take a dominant role both in terms of the author as researcher and in terms of the staff, sits in tension with her interpretation of the ‘structural sin’ of ableism or normalcy, the belief that typical abilities are superior. Cuddeback-Gedeon is aware that liberation theologies ask for reflexivity and a raising of consciousness among people who are oppressed, and she appreciates the difficulty of this task with people with intellectual disabilities. To navigate this, Cuddeback-Gedeon reinterprets oppression, intentionality and agency. Linking oppression to the structural sin of normalcy, she identifies strategies to normalize activity as occasions of oppression. As an instance of normalcy she gives the example of ‘passing’, where ‘clients who are closest to passing as nondisabled’ have more leeway and privilege. In terms of intentionality and agency, Cuddeback-Gedeon interprets occasions where clients resist or cede to the structures that surround them as instances of resisting or being complicit in oppression. She finds implicit opposition to normalcy, but also complicity, through the manipulative strategies of some clients who take longer over breaks or take the long way round to their workstations to meet up with friends. She illustrates how the ‘powerless’ use the ‘public script’ against the powerful by, for instance, calling staff ‘friends’ or reminding staff to be nice to them.
For Cuddeback-Gedeon, agency for liberation also means agency that risks sin. Cuddeback-Gedeon points out that in some theologies people with intellectual disabilities are either blessed or damned: they are either likened to angels or their disability is connected to sin, though this is a rather dated polarization in disability studies. Nevertheless, for Cuddeback-Gedeon ‘the primary form of sin which theologies of disability engage is the structural sin of ableism….that shapes the sin of clients and staff alike’. Here the author dismisses Pope John Paul II’s understanding that social sin is also personal on the grounds that his understanding fails to account for ‘moral opacity’. In addition. she critiques instrumentalization of disabled people in the sense that ‘they’ teach nondisabled people how to be better people. This charge of instrumentalization, common in disability studies, seems to forget the theological point that it is everyone’s task to help others become better and more truly human.
A significant weakness in the book is the disconnect between the main body of the book’s reflection on the Payton community, and the concluding chapter which outlines discriminatory practices in the Catholic Church in the USA. Cuddeback-Gedeon states that one of her original goals was to improve the work of inclusion within faith communities. Specifically, she calls out the US Catholic Church’s perceived lack of attention to discrimination legislation and failures in practices and policies in spite of its statements on inclusion and justice. In Cuddeback-Gedeon’s view, due to a lack of training and education many faith community leaders are well-intentioned yet ‘blithely unaware’ of the way in which their churches and ministers fail to implement inclusion or to foster of a sense of belonging for people with intellectual disabilities. Moreover, they miss opportunities to understand inclusion better by failing to dialogue with social services. Church institutions may be willing to include, but Cuddeback-Gedeon claims that this is a reactive rather than a proactive stance. Barriers to inclusion range from physical access, to uncertain responses to the needs of people with intellectual disabilities, and attitudinal failures such as reluctance to engage with people or presumptions that people cannot connect in a meaningful way with the liturgy, coupled with a focus on deficits rather than gifts. Cuddeback-Gedeon further claims that ‘inclusion is not possible without attention to the structures that enable it’, specifically justice within relationships of dependency. Belonging, she argues, should not be ‘coloured by normalcy’, the assumption that ‘integration is superior simply because of the presence of the nondisabled’.
Cuddeback-Gedeon’s conclusion is a critique of practices in the Catholic Church plus warnings and possible remedies. Yet, this conclusion does not reflect her study in the rest of the text of the Payton community. Certainly, in her introduction, Cuddeback-Gedeon explains that by taking a theologically ‘liberationist’ approach to intellectual disability, she aims to change ‘concrete, exclusionary practices’ and to challenge ‘bad theologies’ that have perpetuated exclusion. Among these bad practices, the author lists ‘bad Thomisms’ and ‘pure ableism preventing disabled people from taking ministerial roles’. References here would rescue the author from unnuanced generalisztion. However, it appears to be up to the reader to make the connections and apply Cuddeback-Gedeon’s analysis of what happens in the Payton workplace to what happens in the ecclesial setting. Undoubtedly there are interesting connections to be made, which is possibly why Cuddeback-Gedeon speaks in theological language of moments of grace, personal and structural sin, and human flourishing in the Payton context. Nevertheless, one rationale behind ethnography developed from a standpoint of liberation theology is to speak from a position of situatedness, which is why Cuddeback-Gedeon engages in direct fieldwork research from within the Payton community. She also seeks to speak as a Catholic lay-minister in which case research explicitly from her church community would give weight to her method and conclusions. Situatedness does, however, give justification for the author’s sole focus on intellectual disability in the North American context from its history, schooling and advocacy to its social services and practices.
Even if at times she appears dismissive of theological understandings that are not coloured by liberation theology, The Work of Inclusion demonstrates Cuddeback-Gedeon’s passion for creating just relationships in all areas of life, notably where good intentions seem to mask ableism and normalcy.
