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Gareth M. Thomas (he/him), Cardiff University

Gareth M. Thomas is a Reader in the School of Social Sciences at Cardiff University, UK. He is a sociologist interested in disability, health/illness, medicine and reproduction.

For the video recording of this presentation, please see the online symposia page.

I am a sociologist by background, with a history of working within – and at the intersections of – medical sociology. Medical sociology, broadly conceived, applies the theories and methods of sociological thinking to the study of (among other things) the social organisation of medicine and health care, the social determinants of health, and the life-worlds of ill and/or disabled people.

My first substantive engagement with critical disability studies (CDS) began several years ago. I had previously dabbled fleetingly in its scholarship, specifically when carrying out a study on prenatal screening and testing. Yet, it was only later – during an interview-based study with parents of children with learning disabilities – that I delved deeper into scholarship which counted itself as being within the broad church of CDS.

Previous research on this topic was somewhat ample, focusing on, for example, how parents (and particularly mothers) were cast as heroic and selfless trailblazers, how parents were perceived as complicit in their child’s oppression (e.g. hindering development and/or promoting an impairment-focused understanding of disability), and how parents dismantled deficit narratives of parenting disabled children. Others used the concept of ‘stigma’, citing  book on this very topic, to understand parents’ experiences. This work, often drawing upon Goffman’s concept of ‘courtesy stigma’ (how stigma extends to close affiliations of people who are stigmatised), examined how public encounters can be tense and troublesome for parents (see: ; ; ).

In my own work, I intended to examine – among other things – if parents told alternative stories. I wanted, in turn, to see whether, and if so how, parents deviated from tragic and pitiful (and, yet, popular) representations of disability. During interviews, parents talked about their lives in positive terms. Their children were a source of both celebration and pride. Parents’ lives were valuable and, for some, ordinary. They lived with, not despite, disability. The principles and sentiments of CDS helped me to make (greater) sense of such experiences. With ‘stigma’ seeming to be an inadequate descriptor for their lives, CDS provided me with an appropriate language to understand parents’ reflections. Specifically, they said their children: are part of the wide diversity of the human condition; disrupted normative and ableist assumptions about what is ‘normal’, and; countered popular orthodoxies and discourses of deficit. In short, parents ‘cripped’ (; ) understandings of parenting disabled children; they disassembled normative scripts assuming a life of misery and misfortune.

Nonetheless, parents did not always tell such rosy stories. They told me, at length, about their experiences of navigating institutions, and the exhaustion and stress caused by constantly having to – in their words – ‘fight’ and ‘battle’ to secure resources for their children. Parents lamented the constant need to navigate, frequently with considerable difficulty, what they collectively referred to as ‘the system’. As shown elsewhere (e.g. ; ), parents competed for scarce resources ‘in fragmented systems that often do not seem to value their children as people’ ().

I made sense of such experiences with reference to two bodies of scholarship. First, I read recent contributions on rethinking the sociology of stigma, which recognises the need to reconsider stigma through a lens of power, structure, and inequality (e.g. ; ). Second, I engaged with CDS scholarship to analyse parents’ stories that located their troubles not in their children’s bodies, but in the societies in which they live. One mother crisply summarised this position to me during an interview: ‘[my son] doesn’t drive me nuts. It’s those things around him that drives you nuts’. The experiences of parents were a product of the conditions of ‘disablism’ (i.e. the social, political, and cultural exclusion of people with physical, sensory, and/or cognitive impairments) and ‘ableism’ (i.e. the ideologies upon which the able-bodied, individual, and productive citizen are based – see here). One concept from CDS that I found very helpful here was ‘neoliberal-ableism’ (), where disabled people and their parents (particularly mothers) see their rights eroded under neoliberal regimes and belt-tightening. It reminded me of Katherine Runswick-Cole and Sara Ryan’s (2019: 1129) claim:

Mothers are forced to meet these challenges as they try to weave, ease, negotiate or batter a path for their children to lead flourishing lives. At times it can feel like being in the trenches with strong binoculars, scanning the terrain ahead with fear and horror. Many mothers quickly learn that it is not their children who need fixing but the world around them.

In this and other research projects, CDS has substantially transformed my scholarship. I am always reminded of, and inspired by, the mantra that we should start with disability, but never end with it (). My enthusiasm for the tenets and sensibilities of CDS is unlikely, though, to surprise those likely reading this essay.

However, I simultaneously push for an open engagement with other disciplines. I recently published an , and co-edited a  in the journal , on the lack of dialogue between disability studies (broadly conceived) and medical sociology. My worry is that scholars will continue to buy into the worldview of a single discipline in ways that encourage insular scholarship (i.e. of preaching to the converted) and nourish silos. My research, included that outlined above, engages with concepts and ideas from CDS and from (medical) sociology, anthropology, and science and technology studies (STS). Similarly, in an  at iHuman, I consider the possibilities for convergence between CDS and the work of Erving Goffman, whose scholarship (and especially on stigma [see above]) has been subject to intense scrutiny within disability studies. Drawing on an ethnography of a café run with people with learning disabilities, and bringing together  notions of ‘deference’ and ‘demeanour’ with CDS-associated concepts (e.g. ‘’; ‘disablism’), I show how interactions between people with learning disabilities and members of the public are organised and imbued with acts of dis/respect.

My point, here, is that I want to consider how CDS can enter into meaningful conversations with other disciplines. CDS must be wary of erecting rigid boundaries that leaves little room for collaboration. Both engaging with ideas from divergent sources and taking ideas from CDS into new circles is crucial. We might ask, then, how CDS can also be transformed by an engagement with research, theory, and scholarship from elsewhere.

References

Blum, L.M. 2015. Raising Generation Rx: Mothering Kids with Invisible Disabilities in an Age of Inequality. New York: New York University Press.

Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. New York: Penguin.

Goodley, D. 2014. Dis/Ability Studies: Theorising Disablism and Ableism. London: Routledge.

Goffman, E. 1956. The nature of deference and demeanour. American Anthropologist 58(3): 473–502.

Goodley, D., Lawthom, R., Liddiard, K. and Runswick-Cole, K. 2019. Provocations for critical disability studies. Disability and Society 34(6): 972–997. 

Gray, D.E. 2002. ‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness 24(6): 734–749.

Green, S.E. 2003. “What do you mean ‘what's wrong with her?’”: stigma and the lives of families of children with disabilities. Social Science and Medicine 57(8): 1361–1374.

Green, S.E., Darling, R.B. and Wilbers, L. 2016. Struggles and joys: a review of research on the social experience of parenting disabled children. In: Sociology Looking at Disability: What Did We Know and When Did We Know It. Green, S.E. and Barnartt, S.N. eds. Bingley: Emerald Publishing, pp. 261–285.

Kafer, A. 2013. Feminist, Queer, Crip. Indiana: Indiana University Press.

Koro-Ljungberg, M. and Bussing, R. 2009. The management of courtesy stigma in the lives of families with teenagers with ADHD. Journal of Family Issues 30(9): 1175–1200.

McRuer, R. 2006. Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press.

Runswick-Cole, K. and Ryan, S. 2019. Liminal still? Unmothering disabled children. Disability and Society 34(7–8): 1125–1139.

Scambler, G. 2018. Heaping blame on shame: ‘weaponising stigma’ for neoliberal times. The Sociological Review 66(4): 766–782.

Thomas, G.M. 2022. A legacy of silence: the intersections of medical sociology and disability studies. Medical Humanities 48(1): 123–132.

Tyler, I. 2020. Stigma: The Machinery of Inequality. London: Zed Books.