Adjustment to dis/ableism, affect and agency in clinical settings: a provocation?

Laura Sanmiquel-Molinero is a Juan de la Cierva post-doctoral research fellow at the Department of Social Psychology of Universitat Autònoma de Barcelona (Spain). Her research focuses on the dialogue between Critical Disability Studies and traditional approaches to disability in Psychology, Sociology and Anthropology from an intersectional perspective. She has also participated in a research project on disability and sexual and reproductive rights funded by the Spanish Ministry of Science. She has authored several journal articles regarding dis/ableism and its intersections.

As a disabled woman and a psychologist, I had always been obsessed with the mantra: “you have to adjust to your disability”, repeated both within psychology and in my everyday environment. What did it actually mean? How was a subject supposed to speak, act and feel in order to be considered well-adjusted to their disability? Since discovering Critical Disability Studies, I was able to give a new meaning to the question: what role did ableism and disablism play in this “good adjustment”? Could it be that a well-adjusted disabled person was in fact a person well-adjusted to dis/ableism? In what ways did this process of adjustment take place through affect? What affects did ableism and disablism prescribe and proscribe for disabled (and non-disabled) body-subjects?

In order to try to answer some of these questions, some years ago I decided to carry out a narrative-ethnographic study (Sanmiquel-Molinero, 2023) in what struck me as a production line of “well-adjusted disabled people”: a neurorehabilitation hospital. To take on this task, I found invaluable support in the work of academics such as Dan Goodley, Kirsty Liddiard, Katherine Runswick-Cole, Rebecca Lawthom, Donna Reeve and Carol Thomas. Over the past twenty-five years, all of them have worked to reclaim affect as an indispensable analytical (and political) category for Critical Disability Studies.

I will now outline how their concepts of ‘affective disablism, emotional labour and ‘agency as affect’ have influenced my work. The notion of ‘affective disablism’ helps us account for all those emotional impacts that disabled people experience on a daily basis, insofar as we are constantly told that ‘we are out of place in the world’. This can take multiple forms: a supposedly ‘well-meaning’ comment on how inspiring we are for not having committed suicide despite ‘our situation’, or the architectural barrier at the train station that, according to the authorities, there are ‘still no resources to remove’… What was expected of a body newly inducted into the disability club in the face of such situations? Early on in my ethnography it became clear that the answer was none other than emotional work.

The concept of emotional work allows us to name all those emotional performances that the ‘demanding non-disabled public’, as Goodley (2017) would put it, requires us to enact in response to affective disablism. Forget about telling off lovers of inspiration porn, forget about proclaiming that we have a right to travel on public transport without constantly putting ourselves at risk. As became clear in the hospital’s psychology sessions I participated in, the best response to such grievances seemed to be to ‘look the other way’. There began to emerge what it meant to be well-adjusted to a disability in affective terms: nothing other than appearing unaffected by dis/ableism. But it was not enough simply to declare, chest out, ‘that kind of thing doesn’t affect me’. The true good adjustment lay in claiming ‘those things don’t affect you’ while allowing them to affect you in ways that reproduce dis/ableism.

And this brings us to the third concept from Critical Disability Studies that has most influenced my work: thinking of affect not as mere emotion, but in relation to agency. From the Spinozist conception proposed by Goodley et al. (2017), agency is the ability to affect and be affected by one’s human and non-human environment. If being well-adjusted to disability means appearing unaffected by dis/ableism while acting according to its normative demands, then good adjustment to disability leaves us ill-equipped to affect these systems of oppression.

When I first communicated these results to the neurorehabilitation hospital some years ago, the response was not what I expected: while some psychologists there supported me, others were negatively affected by my explanations, which they considered biased — surely the product of my own traumas with disability — and hurtful, insofar as they implied an attack on their daily practice. At the same time as my work as a researcher had affected them, my own ability to affect ‘the field’ was also altered. As Liddiard (2013) explains, I was forced to undertake significant emotional work to keep myself afloat during fieldwork: I had been hurtful, but I was also hurt. The doors of the observation spaces I had worked so hard to open began to close, literally or symbolically. Fortunately, I was supported by colleagues such as Andrea García-Santesmases, who helped me navigate the situation, and my virtual research stay at iHuman with Kirsty Liddiard and Dan Goodley also helped me 

All of this led me to connect two concepts often understood as opposites: agency — as the ability to affect and be affected — and vulnerability — as the susceptibility to be wounded by the environment. In what ways could the lens provided by Critical Disability Studies, which had been so healing for me as a disabled woman, also leave deep wounds in professional spaces? Had that wounding been counterproductive, insofar as it not only affected me emotionally but also prevented me from significantly affecting the hospital’s dynamics in ways that counter dis/ableism?

A few months after completing my doctoral research, one of the professionals at that hospital put me in contact with Javier Monforte, who is the one who invited me to be here today, as he felt that ‘we spoke a similar language’. Together, we are beginning to reflect on these questions, since we are concerned with the challenge of bringing Critical Disability Studies into clinical settings, which are increasingly keen to incorporate a social perspective but still reluctant to address dis/ableism and affect. We do not yet have definitive answers. We are confident, however, that sharing this presentation with you today will stimulate us in building one.

References:

Goodley, D. (2017). Disability studies: An interdisciplinary introduction. SAGE.

Goodley, D., Liddiard, K., & Runswick-Cole, K. (2017). Feeling disability: Theories of affect and critical disability studies. Disability & Society, 33(2), 197–217. https://doi.org/10.1080/09687599.2017.1402752

Liddiard, K. (2013). Reflections on the Process of Researching Disabled People’s Sexual Lives. Sociological Research Online, 18(3), 10.

Sanmiquel Molinero, L. (2023). El ajuste a la discapacidad como espacio-tiempo liminal: Un análisis desde los estudios críticos de la discapacidad [PhD Thesis, Universidad Autònoma de Barcelona]. Department of Social Psychology.