Category Archives: academic

Crip(pl)ing Pain – Poster Presentation at Encountering Pain

At the end of last week, I went to the Encountering Pain conference at UCL. The conference was really good – it was very much an interdisciplinary conference, so there were people from a range of academic disciplines, as well as artists and medics. One of the starting points of the conference was the work of Deborah Padfield – particularly the pain cards she co-created alongside people living with chronic pain who were also undergoing medical care for their pain; I really recommend looking at Deborah’s work – and attendees also heard from project participants, which was really interesting.

I was asked to prepare a poster – not my strength at all, unless it involves felt tips – on the topic of crip and pain, hence the title. I probably spend too much time trying to be witty with titles. My poster was a very short account of how crip theory can be used to expose some of the problems with chronic pain. You can look at a pdf version of the poster (which was also the flyer version), and a word version if that’s more your thing (especially if you’d rather not deal with images and layout).

I’m going to try and explain what I mean by the problems with chronic pain. I am also going to try and not use complicated academic language like I did on the poster. Please tell me if I am not explaining my ideas very well.

So, to start with – crip theory puts forward this idea that modern society (at least society in the UK, but also in the US and other similarly set-up places) sees “normal” as the ideal – so everybody should want to be “normal” and society is set up so that “normal” people benefit from it. Some people are not normal because they are disabled, or gay, or not white, or old, but society also thinks those not-normal people should be trying to become normal, because being normal is the best way to be. In academic words, this is called “compulsory able-bodiedness”.

Pain means lots of things in modern society, and pain is both normal and not-normal (in the same way a white gay man is also normal and not-normal). I think there are five big ways that pain is related to the idea of normal.

One: it is normal to feel pain. There are some people who do not have certain genes, which means that they cannot feel physical pain. This is considered a serious disability, and it does make certain parts of those people’s lives very difficult. This is because pain is very useful to us when it tells us our bodies are doing something dangerous, like touching a hot cooking pan, or that we are sick.

Two: normal people are able to talk about their pain, and tell other people when they feel pain, and why they feel pain. If I bang my toe on a step, if I am a normal person, I need to be able to say “ow. I have just banged my toe on the step and so my toe hurts.” Sometimes we need the help of other people with special training to help us understand why we feel pain – these people are doctors.

Three: pain only has meaning in relation to other things. This is a little bit complicated, but: I banged my toe on the step and now my toe hurts. The pain itself is only important because I banged my toe and because I tripped. If I have a headache, the pain is only important because it can tell me or the doctor that there is a problem. Pain on its own does not have meaning. This is why chronic pain is such a big problem in this society that wants everyone to be normal – because it is not telling us or doctors anything, it does not tell me anything about the world, and it is not caused by anything. It is just pain.

Four: pain is bad, even when it is normal. Nobody is supposed to like having a headache, or falling over. Normal people should try to stop feeling pain, usually by stopping what they are doing, and sometimes by taking medicine. When people are in pain they are not good at being normal – and because we are supposed to want to be normal, we are supposed to want to stop pain.

Five: we do not try to feel pain. This is joined to number four – pain is bad, normal people want to stop their pain, and normal people also do not want to do anything that will make them be in pain. If we are doing something that makes us feel pain, the pain is still bad – and these things are only acceptable because the result is good: when we do a lot of exercise, and when people give birth to babies. People who like to feel pain, or who do things even though they will feel pain, are not normal people.

I think this is a really important thing to consider, because pain is very important in medicine and also in disability, because almost everybody feels pain at some point in their lives. Even people who do not feel pain in their bodies feel painful emotions (and sometimes it is hard to tell what is a painful emotion and what is a painful sensation – it is not always helpful to split them into two things).

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So, back to the conference. It was really interesting to hear so many perspectives on pain, and about all the ways people interact with pain. Rita Charon’s talk on narrative medicine was really good, particularly when she talked about the need to practice social justice with medicine (although I got the feeling this made some people in the audience uncomfortable – possibly because we think of medicine as this very neutral thing). One of the things I did notice was that people didn’t really mention disability much – and there was no suggestion that chronic pain could be considered alongside disability, or as a part of disability. I think this is partly because disability rights and disability theory hasn’t always been comfortable about including people living with chronic pain, or talking about pain more generally – but more so because a lot of the thinking about chronic pain was very based in medical diagnosis, so people were separated out based on what diagnosis they had. So while we could talk about trigeminal neuralgia and M.E./C.F.S at the same time, as both are chronic pain diagnoses, there wasn’t space to talk about M.E./C.F.S. and autism, or fibromyalgia and Downs Syndrome in the same space. For me, this was really disappointing, as I thought that a lot of the ideas people were explaining, particularly when it came to problems with doctors and patients, could really have benefitted from some disability theory reading.

There was also division between medics and people living with chronic pain – even though there was some acknowledgement that people living with chronic pain could be experts, they were never expert medics. Expert art therapists, or artists, or writers, or even expert patients – but not medics. There was some discussion of empathy, and of doctors’ hero complex (where doctors don’t like to lose and don’t like to be wrong), and even of the problem of this word normal creating artificial divisions. I really, really think some consideration of the ideas of compulsory able-bodiedness, of medicine as a system of knowledge and power, and of ontological intolerability would really have helped. I know these aren’t necessarily considered suitable topics for events that want to be engaged with the public, and they are definitely uncomfortable topics in medical spaces, but my one disappointment was that there was so little space to speak back to medicine, to challenge it directly.

Otherwise it was a fabulous event, really interesting and engaging – and with some great dance from Anusha Subramanyam. I really recommend looking back through the tweets at #encounteringpain and exploring the various images and texts linked to there. Sue Main’s work at Exhibiting Pain is definitely worth a look (and a comment) – as is this essay from GP Jonathon Tomlinson (which contains some great links at the end). Huge thanks to Deborah and her team for organising (and Deborah more personally, for the encouragement and talking me in to doing it when I panic-quit).

 

The Politics of Performing Self-Care

Self-care has become something of a fashionable topic recently; I see posts and tweets about the importance of self-care on academic twitter weekly, if not daily. A quote from Audre Lorde’s Burst of Light (1988) is often punted around; “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

It is a beautiful quote. Burst of Light is a beautiful book, an important one. Sara Ahmed’s blog post on Selfcare as Warfare is one you should read before going any further, because she makes clear how self-care is an important political project, particularly for women of colour. I am not disagreeing with that. Self-care is important. Self-care is an important political act. But at the same time, self-care is being used as a panacea. Feeling a bit down this January? Self-care! Got a cold? Self-care! Working 80+ hours a week? Self-care! Precarious employment? Self-care! And in all of these situations, self-care remains important. Self-care enables us – or at least that is the intent – to get back up and carry on, to reestablish our buffers against neoliberalism, racism, sexism, ableism, our own weaknesses and losses. To fight back and say that we are important.

However, in reminding us to care for ourselves – to put on our own oxygen mask before helping others – the critical details are lost.

Self-care, like all care, is work. Sometimes it is hard work, costly emotional labour. It might not seem particularly like work, especially from the outside – because self-care quite often takes the form of not doing more “proper” forms of work, or at least that is the perception of what it should be. Sometimes self-care really does take the form of sitting on the sofa with a cup of tea and a romance novel (or your mental screensaver of choice). But focusing on self-care as obvious relaxation ignores other ways self-care can occur; it might involve cooking from scratch (consuming time, energy, and money), walking (requiring energy, time, and access to pleasant outdoor spaces), or hundreds of other activities positioned as beneficial to our health, all of which require us to have the time and energy to carry them out, and the relative privilege to access them.

Frequently, self-care is positioned as a break from routine. If your days are sedentary and indoors, then self-care should be active and outdoors – but this ignores the nuances of access to physical space, to the energy to go out and use that space in socially appropriate ways. And for your self-care to be recognised as such – rather than condemned as laziness or inadequacy – it should be recognisable as self-care to others. Sometimes this involves signposting, the literal telling of an audience; “I am going to take a walk in the park, this is my morning self-care!” Sometimes it is more subtle – taking a picture of the view and sharing it online, or performing your self-care in the trappings of serious leisure, wearing trainers or walking shoes.

This is not to say we should stop doing such things; it remains important to talk about self-care because in doing so, we draw attention to the need for self-care itself. We just need to be a little more critically understanding in what we count as self-care, in including those acts of care that are not clearly acts of leisure or relaxation – acts that are more obviously self-care work. A morning spent checking all the bills have been paid, and balancing your budget for the coming months is not particularly relaxing – but it is important self-care, especially for those of us who work in precarious or underpaid employment, or who rely on state benefits. A trip to the chemist to fill a prescription is self-care, as is doing the grocery shopping or putting the bins out. If self-care is survival, then we must include care work as a part of it – because those invisible acts enable us to survive.

In the same way, it is important to remember that there is privilege in self-care, even though the necessity of self-care work is forced upon us by a lack of privilege. The forms of acceptable self-care, the ones easily recognised as self-care, need privilege not just to take place (due to their need for resources and performance of conspicuous leisure/relaxation), but also to be recognised as self-care. Sitting on the sofa, watching tv, needs to be contrasted with “proper” work – it must be performed by someone who is able-bodied/minded, properly employed, and “healthy”. Self-care might be performed by all, but is only recognised as such when certain people perform it. In talking of self-care, and performing conspicuous self-care, we must be aware that we are privileged, not just in having leisure time and money, but also to have our self-care recognised as leisure, not laziness.

In some ways, performing conspicuous self-care has become a part of the project of the self, a part of the discourses of risk and health. We have become required to include self-care – particularly the care of our mental health, but also our physical health and fitness – as a part of mitigating the risk of illness through performing acts of healthfulness. We must demonstrate our not because we lack privilege and are debilitated by socioeconomic processes – but to demonstrate that we are not the rejected Other; to demonstrate that we are able-bodied/minded, employed, and capable of taking care of ourself in the appropriate way (and flexible enough to do so in terms of what is emphasised at the time, whether it is colouring in for mindfulness or running for charity). Self-care is a way of demonstrating ourselves as “proper” humans, capable of conspicuously resisting debilitation. It is not so much a political act of resistance, as an act of demonstrating our humanness.

Discourses of self-care are double-edged. Resistance to power, but also a part of demonstrating our powerful position. Thus, in talking about self-care, while we might care for ourselves, we might be positioning ourselves as properly worthy of that care – and ignoring the self-care of others.

Chronic pain is not like other pain: or, a paper wot I gave last week.

Last week I went down to Brighton University for the Understanding Conflict and Critical Research Studies Groups’ conference, Re-engaging Elaine Scarry’s The Body in Pain, a 30th anniversary retrospective. I’d been really looking forward to it, as the programme looked awesome, with two keynotes speakers – Elaine Scarry and Joanna Bourke – whose writing has had a huge impact on my work.

I presented a paper called The Problem of Chronic Pain, in which I spoke about the early themes appearing in my research, from the interviews I have done so far with my participants. The paper started with a very short explanation of my research, including a brief summary of who my participants were, as a group – so I mentioned how they did and didn’t fit the picture of a “typical” BDSM practitioner (if there is such a thing!), and how there was a lot of difference between them all, in terms of impairments and practices. Then I picked out a few of the big themes that were starting to appear.

Firstly, I looked at language. In Elaine Scarry’s book, The Body in Pain, she writes about how pain is outside of language, and our expressions of pain (such as “ow”) are not words. For me, this means that being in pain is dehumanising – that, a person in pain is understood as not being fully human – while at the same time, we can see that rationalising and describing pain is understood as making us human – to be human, we have to be able to move past the animal expressions of pain in order to use metaphors like “burning” and “stinging” to describe what we feel. This is, of course, rooted in an ableist, normative understanding of what it is to be in pain when a person is able-bodied and able-minded.

At the same time, pain is something that is normally thought of as unwanted; we do not like being in pain, and people who are in pain are expected to seek help – because pain is assumed to result in suffering. This ableist idea of what suffering is means that pain becomes ontologically impossible, to borrow a phrase from Fiona Kumari Campbell (2009). At the same time, non-disabled people, and people who are not in pain, do not like seeing or hearing about people in pain. It can even be difficult for me – someone living with chronic pain – to hear about other people’s pain; I struggle to watch films with gory or realistic surgery scenes, for example.

This situation is difficult for people in chronic pain – in order to establish themselves as “proper” humans (and get help), they have to be able to talk about their pain, but they are pressured to remain silent because people don’t like hearing about pain. This quite often means people in chronic pain are not believed – especially women and people of colour. This was a conflict for a lot of my participants, and made them feel both dehumanised and dismissed. At the same time, they did find support in communities of other people with chronic pain, friends, and family members – although this could be difficult to establish.

The next big theme, again influenced by Scarry’s writing, is the problem of pain being understood in lots of academic writing as an attack on the phenomenological self (to put it more simply, pain affects how we experience the world and our sense of self), and experiences of pain result in the world being “broken” – and then remade through recovery, once the pain stops. However, Elaine Scarry was writing about acute pain, specifically pain in torture – and this is not the same thing as chronic pain. From talking to my participants, I think that chronic pain does not result in a permanently broken world – because my participants continue to have lives and experiences beyond their pain.

Chronic pain does not lead, precisely, to a constant cycle of unmaking and remaking of the world and our sense of self – because people who live with chronic pain are people, and not simply bodies, and they are people living with pain, rather than bodies in pain. This distinction seems a little trivial at first, but I think it might be rather more important – not just because it challenges how chronic pain is understood, but challenges normative conceptions of pain. This does not mean, however, that people who live with chronic pain do not have their identities changed, that their sense of self is not different to who they might have been without pain – but that they have worlds and selves that include but go beyond pain. I used the metaphor of a mug that has been broken and glued back together – it can be very hard to see the cracks (the pain), but the person who glued the mug back together knows the cracks are there, and sometimes those cracks might be really important, but sometimes it isn’t – and sometimes the mug is becomes a penholder after it is glued back together.

I might be taking this metaphor a bit far.

Several people said nice things about my paper, and made lots of helpful comments that will help me with the rest of this – including some films to watch and some more books to read. I have copies of the properly-referenced version of the paper, as well as an audio recording – if you would like either, please get in touch (while I work out how to put audio on here – I am having a fibromyalgia flare this week and my brain is soup).

Panorama, painkillers, and pain.

I’m watching the Hooked on Painkillers episode of Panorama from the 2nd. I’m quite often leery of this sort of programme, as I think it can feed into the perception of people with a need for painkillers as drug-seeking, and further limit the access of people with chronic pain to longterm pain relief. People like me, really.

I’m not exactly reassured by the opening blurb, that informs me – over the dramatic synth OMG NEWS theme music – that there are people in the UK who are prescribed pain relief medications which are “in the same category as heroin.” Oh do fuck off, Declan Lawn. That’s opiate painkillers – morphine (check), codeine (check), tramadol (check), fentanyl, and oxycodone, and some others. I’ve taken opiates, as have other family members and friends. Scaremongering bullshit like that isn’t helping anyone. “I’ve got really nice boots on, I can’t possibly be [an addict], ” announces a middle-aged woman in a “nice” living room. Dear god. This is going to be awful.

8 million people with chronic pain in the UK (according to the National Pain Audit). We are introduced to a woman with spinal problems, osteoarthritis, and fibromyalgia, who takes a myriad of painkillers, and other medications. When she explains what she takes, we aren’t told what is and isn’t a painkiller – but she’s taking various antidepressants and others that aren’t primarily used for pain relief alongside painkillers.

“Once, [opioid painkillers] were reserved for cancer patients. But not any more.” Possibly because doctors have realised that chronic pain isn’t bullshit and does in fact require long-term pain relief? Lawn tells us that it is due to a culture shift, but doesn’t really explain what underlies that shift – whether there is a change in licensing, in diagnosis of chronic pain, or of how doctors are trained to deal with medicating chronic pain.

We’re a third of the way before we start to explore what the culture shift might be – after watching the lady with fibro and the middle-class addict with nice boots have described their experiences. But Martin Johnson from the Royal College of GPs only gets a few seconds to explain a little bit (he mentions the role of an ageing population, and that pain relief is a basic need), before back to Lawn starts in with the doom-mongering. Cue sad harmonicas. Cue big pharma. Cut to a few seconds of a film showing young black men on a street, leaning against a graffiti-covered wall, and a grainy news clip in which a panicked-sounding woman tells us of armed robbers in pharmacies. I’m not saying that oxycontin and other opioids aren’t addictive, and that there isn’t (wasn’t?) a thriving illegal trade – but this seems to be over-egging the pudding a little bit.

Lawn takes us to rural Kentucky, the “Ground Zero for the epidemic of prescription opioid abuse,” to talk to men in rehab, as well as a doctor whose son overdosed on oxycontin. Lawn doesn’t mention that it’s entirely possible that the two men who turned to illegal oxycontin also struggled to afford perfectly regular prescriptions, because America’s healthcare system is fucked up.

Oh good, back to Martin Johnson, who seems to be our voice of reason. He points out that while we can learn from America, the differences between the NHS and the US system are different enough (at least for now) to mean that there are also very different factors at play. Johnson seems to be leaning towards saying that there isn’t enough guidance for GPs – which is fair enough. My GP knows very little about fibromyalgia, and it’s been several years (and several house moves, and therefore several GPs) since I saw a GP who did. But we aren’t allowed to dwell on what that guidance would look like, because it’s time to find another middle-aged, respectable man to tell us about what it’s like to be in constant pain a drug addict. His family helps him manage his pain, and his medication – he is going to a pain clinic, because he wants to take less painkillers. Like every other person in chronic pain, he seems to be balancing the need for pain relief with the risks and reality of being dependant on prescriptions. I’m dependant on my prescriptions – not just my painkillers, but on my antidepressants too.

24 minutes into the programme and Lawn mentions that the lady with fibromyalgia isn’t just getting help with her painkillers, but also with her pain management. Perhaps this is the problem – that it takes months, if not a couple of years, to get to a pain clinic, where medication is integrated with other forms of therapeutic pain relief? Maybe that’s why there’s also a problem – we don’t have any other choice but to take painkillers, because we need some relief while we sit and wait for referrals, assuming we live where there is a pain clinic, and we have a GP who can refer us. Cathy Stannard, a Consultant in Pain Medicine tells us that coming off opioid painkillers is better even if there is no alternative – that opioid painkillers are best in the short-term.

The problem being that there is nothing else to offer. Some people probably are prescribed too many painkillers, for too long, and too frequently – and some GPs probably do jump straight to heavy-duty opioids before trying some of the others. But there is frequently no alternative – and being in pain is not acceptable, both to individuals in pain, and to society at large.

We have a crappy relationship with pain, in our society. Pain is cast as very, very negative – being in pain is constructed as unsustainable, as impossible to live with. A person in pain is not a person – they’re less than human, an animal. Doctors see pain as a personal affront – just as any other symptom needs to be cured quickly; pain is suffering, and suffering must be stopped as quickly as possible. People who live with chronic pain challenge this ideological standpoint, and there is a huge temptation to shove them under the rug, treat them quickly with what should work, rather than taking the long route. That is the real problem – not the people in chronic pain, and not the people in chronic pain who are dependant on painkillers.

 

 

 

 

Debility and disability, or, let’s crip disability (rather than queer it)

It’s been a few days but it’s taken me a while to get my thoughts together (and deal with a few other bits that needed doing). Last week I was able – after a few abortive attempts – to see one of Jasbir Puar’s public lectures, titled Debilities: Sensing Bodies and Worlds.

The debilities Puar refers to are, and she did stress this, not the same as disability, but rather an overlapping category, where debility is based on a lack of affective capacity, or a a state where an individual is – and this is, unfortunately, rather hard to explain without a lot of specialist language – limited in what they can do by the conditions and demands placed on them by social, cultural, and capitalist structures (whether explicit or not); on the surface, it sounds a lot like disability. Debility is rooted in situations where human frailties are pitted against wider systems, and in terms of thinking about the damages done to people through systems of labour, heteronormativity, and so on, it’s pretty useful. I’m not entirely convinced it’s useful when it comes to thinking about disability as a distinct category (which, if I understood her correctly, Puar did not want to do, talking about the priviledging of disability as an identity category), because, while trying to deconstruct the line between disabled and able-bodied and able-minded, McRuer’s concept of compulsory able-bodiedness works a little better (although I side with Alison Kafer, who points out it is both compulsory able-bodiednes and able-mindedness, because disability isn’t just about physical impairment).

I think part of it is that Puar’s debility-centred approach is rooted in disability as an individually-experienced aspect of life – which is undoubtedly influenced by the role of the Americans with Disabilities Act (ADA) – and a sociocultural understanding of disability that is focused on the individual, rather than that more commonly found in the UK, where the Social Model is more prevalent (where disability is something done to people on a social level, and then experienced by individuals with various impairments). On the surface, a debility approach is more in line with the Social Model – it is about how social structures affect people, and I think they could work quite well together – Kafer’s Feminist, Queer, Crip illustrated an approach that uses both (although she doesn’t use the term debility). However – and this was my main problem – Puar seemed almost to use the two interchangeably, or to discuss debility as though the bodies who experience it are all equal – when I would argue that debility is experienced by disabled people as additional, and exacerbated by disability/impairment.And, as mentioned above, Puar talked about the privileging of disability as a category – and I’m not entirely sure if she intended it as how I understood it, but I understood it as, in labelling some individuals as disabled, their various frailties and situational debilities were taken more seriously. For me, this is a problematic way of looking at it – it denies that a collective sense of identity for disabled people (a collective self-identifying identity) can be a useful way of challenging the selfsame capitalist structures Puar identified as problematic.

In effect, because debility is situational, and varies over time, it is not always a way of being in the same way disability is – in that debility is not also an identity (or perhaps experiential filter would be a better term, in it is a way of being in the world that colours how both the world and the self is experienced and imagined). Debility does not account for impairment, and it is not enough to account for disability – for myself, while I may not feel or be debilitated by a particular situation, I still experience that sitation as a disabled person. Focusing on situational debility, and excluding disability/impairment denies my experience and identity as a disabled person.

I don’t think Puar is trying to make them equal, or to replace disability with debility, but I think there is a danger that the body becomes ignored in a focus on debility, especially where queer deconstructivist approaches tend to hold sway. However, I think – and this is influenced by a point another audience member raised right at the end – the movement of queer theory, as a product of the neoliberal academy, into disability, is perhaps appropriating and doing violence to the histories behind the terms and identities. In that, I think I like the use of crip studies, or crip disability studies, rather than queer disability studies – crip is a seperate school of critical thought, and while it draws heavily on queer theory, it places disability and crip at the centre, rather than queer. If nothing else, there is more room for the body in crip thought – more room to acknowledge that there is an embodied experience of being crip, one that moves beyond identity into the frailties of the body – and those frailties are central to how we are in the world.