Disability + Borders (25th February, 2019)

In this session we read:

  • Emma Sheppard, ‘Using Pain, Living with Pain’, Feminist Review, 120 (2018), 54 – 69
  • Margaret Price, ‘The Bodymind Problem and the Possibilities of Pain’, Hypatia, 30.1 (2015), 268 – 284

Dr Emma Sheppard joined us for this session to talk about her paper, ‘Using Pain, Living with Pain’, and her idea of the ‘bodymind.’ Emma is a lecturer in Sociology, and her research is in critical disability studies, in particular the experience of pain and fatigue, the development of the concept of crip time, and the intersections of disability with sexuality and gender.  For this research project, Emma interviewed eight participants who identify as having a chronic illness and engage in BDSM (Bondage, discipline, sadomasochism) practices. Emma was interested in how those with chronic illnesses were using BDSM, and why. The project started with the question: What is pain? Biomedical explanations of pain as psychosomatic just weren’t working for her as a person living with chronic pain and they didn’t work for her participants either.

Emma uses Margaret Price’s concept of the ‘bodymind’, which articulates how our minds are as much a part of our bodies, and our bodies are as much a part of our minds. Bodymind became an important term for Emma because it expressed how she and her participants experience pain – it isn’t mental, it isn’t physical, it’s both. Emma developed the term ‘ablebodymindedness’, by combining Robert McRuer’s concept of ‘compulsory ablebodiedness’, the notion that all bodies should be or aspire to be able and whole, with Price’s ‘bodymind’, a term which counters the Cartesian divide of mind and body expresses instead their interrelation.

Containment was also central to Emma’s thinking behind this paper. In their paper ‘‘Like, pissing yourself is not a particularly attractive quality, let’s be honest’:, Jen Slater and Kirsty Liddiard (2018) discuss the ways in which leaking bodily fluids like urine and blood affect dating and sexual intimacy. They discuss how growing up is a process of learning how to contain both bodily fluids but also emotional outbursts. During an interview, one of Emma’s participants described how pain ‘is like a bodily fluid, you don’t want to get it all over anybody’. Pain is something that, in certain contexts, needs to be contained. For the participants in Emma’s study, BDSM provides a space in which pain does not need to be contained, and where they can think about and experience their bodies in ways that are painful but also desirable. 

As a group, we discussed the differences between the psychosomatic and the ‘bodymind’, describing the former as a medical term which has connotations of shaming people with the suggest that it’s ‘all in your head’, whilst the latter acknowledges the relation between the two of them. We discussed how ME activists have fought for a long time for the distinction between the mind and the body, to which Emma suggested that in her understanding, part of the reason why people with ME have fought so long to have their impairment recognised as physical is because of this idea that once something can be dismissed as psychiatric it can be shoved over to mental health team without being given proper treatment and support. The group discussed the biopsychosocial model, which was developed mostly by non-disabled people. Some members of the group argued that contemporary medicine is actually much closer to the idea of the ‘bodymind’ than we have acknowledged, though other participants made the point that there is a big difference between what medicine as a research body of knowledge understands and how it is experienced by non-medics, and pointed towards the ways that biopsychosocial model has been used – e.g. to justify benefit cuts.

Pain is seen as both something negative and to be avoided, but also as part of the normal human experience – an absence of pain is considered a disability. Pain is abject, but is also a constituted part of the human experience. Ways of discussing pain rely on being able to rationalize and articulate that pain. Deborah Padfield’s ‘Pain Cards’ are a series of laminated cards with images on them which aim to give form to pain, and to act as a means of conveying pain to those who aren’t experiencing it – for example, to a doctor. There was a desire in the group to move beyond the value judgement of pain, and towards more of a Levinasian approach – is pain a potential for an ethical encounter? Pain elicits a response from another person, which is what is so moving about Margaret Price’s paper – it offers other ways of responding to pain.

One of Emma’s participants described how they ‘experience pain’ but they ‘try not to suffer from it’, and we discussed the importance of distinguishing pain from suffering – it’s not just the physical pain that a person feels but suffering that ‘leaks’ out onto other people. There is a huge social pressure to disavow pain, and also pressure from disabled and non-disabled people that living with a disability is OK. There are also varying responses to perceptions of pain. Trawalter, Hoffman and Waytz (2016) amongst many others have discussed racial bias in response to perceptions of pain, and Hoffman and Tarzian (2008) have written about gendered bias in healthcare settings where doctors are less likely to prescribe analgesics to women because they are often assumed to have higher pain thresholds and to have the propensity to exaggerate their pain. Emma discussed her explicit decision not to go into specific details about the medical conditions of the participants in her paper because she wanted to emphasise the experience of pain and to move away from diagnosis/impairment categories was because it is not necessarily the most useful way of understanding pain. All of the participants in the study are people who experience chronic pain and who practise BDSM; chronic pain is a reductive category but it is also useful for pain that is not acute and is going to continue.

A recording and transcript of Emma’s talk is available. Please email disabilityintersectionality@gmail.com for access.

References:

Hoffmann, Diane E., and Anita J. Tarzian, ‘The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain’, The Journal of Law, Medicine & Ethics, 28 (2008), 13-27 <https://doi.org/10.1111/j.1748-720X.2001.tb00037.x>.

Liddiard, Kirsty, and Jen Slater, ‘Like, pissing yourself is not a particularly attractive quality, let’s be honest’: Learning to contain through youth, adulthood, disability and sexuality’ Sexualities 21.3 (2018), 319–333 <https://doi.org/10.1177/1363460716688674>.

Trawalter, Sophie, Kelly M. Hoffman, and Adam Waytz, ‘Racial Bias in Perceptions of Others’ Pain’ PLOS ONE 11.3 (2016), e0152334 <https://doi.org/10.1371/journal.pone.0048546>.

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