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).

 

#BADD2016 – On Pain (of course) and the Personal

This post is for Blogging Against Disablism Day 2016. You should go read the rest of the blogs and check the hashtag #BADD2016 on Twitter. Massive thanks, as always, to Goldfish for organising this.

When I tell people about the subject of my PhD, they frequently look at me like I’ve gone round the proverbial bend for a few seconds. I can understand that – chronic pain isn’t exactly the cheeriest of subjects, and it doesn’t sound like there’s a lot of space for much to be done. Then, a lot of the time, something else happens: they assume I am looking to cure chronic pain or they look at my walking stick and ask “so, this is for personal reasons?”

I can, on some level, understand why. But whenever I talk to other PhD researchers, what quickly becomes apparent is that their research is always personal to them – but it is only “minorities” (i.e. disabled people, people of colour, LGBTQ+ people, or women) who are assumed to be doing their research about something personal, something integral to them. And there is a part of my research that is personal – I started to look at disability because I was settling into being comfortable with being disabled, but I found people like me weren’t reflected in what I was studying at the time (which happened to be gender and sexuality). I wanted to go and find a part of academia where I was included.

At the same time, my research wasn’t chosen because I live with chronic pain; it was chosen because when I was interviewing participants about their queer identity and acquired disability, BDSM and kink came up in two of the three interviews – and while that was probably just luck, it came just after I’d had a job working for a BDSM-friendly cafe, Coffee, Cake and Kink – now Coffee, Cake and Kisses, because finding somewhere willing to lease a store to them with the word kink in the title was impossible – where one of my responsibilities was helping to develop the company’s disability/accessibility policy as an employer and a venue, with the aim of making it an accessible space. This was (obviously) a few years ago, and it was very much at the “ideas first, practicalities later” stage – but it was interesting to note how many of my colleagues and our customers and people on the BDSM scene were interested in disability rights, were disabled, or had friends who were. Endless conversations were had, and then when kink came up in those interviews – it seemed to me like this was something that was not being talked about.

Pain is assumed to be a major part of BDSM (for those of you not familiar with the acronym, it stands for Bondage and Discipline, Domination and Submission, Sadism and Masochism – and no, I haven’t read 50 Shades, because I like my porn well-written, thank you) – and while it can be involved in some practices, it isn’t necessarily a foregone conclusion, and you can do kinky things without feeling pain – or causing another to. That said, there are lots of activities that can include playing with sensation – such as flogging, spanking, or needle play – or that might cause pain as a side-effect, such as some positions in bondage; others might include what could be thought of as emotional pain. There isn’t always a great deal of discussion of pain in BDSM – I think because pain has such a negative connotation, particularly with violence and suffering, that it is a difficult thing to really put centre-stage, especially when many people on the scene want to “normalise” BDSM, to remove the stigma of being kinky. So I was interested in what pain meant in that context, as well as in the context of disability. I admit, I went with pain because I have chronic pain – although I was also considering bondage in the context of reduced mobility – because it seemed like such a juxtaposition, but I’d spoken to enough people to know that there were people out there who liked playing with pain, who also lived with chronic pain. It might not have been what I was into, but it didn’t seem unreasonable.

So it was personal, but it also wasn’t. I don’t know if I’d have discovered the gap in academic writing if I hadn’t become disabled, but it isn’t a foregone conclusion. Not everyone who studies disability is disabled (although plenty seem to be – or have disabled family or friends), but not everyone who studies French literature is French – that it is assumed to be correlated is what annoys me. I’m not the first person to get annoyed by this – lots of feminist academics have written about the same issue with their work – but it is something I’m struggling with, separating myself from my writing when I also want to pull out my own experiences, when I have written about how my work affects my pain (simply put – it makes it worse, but also different) and centralised reflexive practices (a.k.a. navel-gazing) in my research methods. It is … difficult.

Which doesn’t mean I don’t wonder if people would stop assuming it’s personal if I wasn’t using a walking stick.

Tortoise Containment

I’ve been working on an outside pen for Lady Thortoise since I got her at the end of last summer. The temperatures are nowhere near warm enough for her to go out – it’s definitely spring here, but it still gets nippy overnight – and the plan is that she’ll go out in the day and come back in at night for the moment, during nice days. That’ll hopefully give the plants time to get growing.Once it gets properly warm overnight (as in, mid-teens) and I’m more confident she’ll be safe in there, she’ll stay out overnight. Lady Thortoise is a 3-toed Box Turtle, and so southern England is just about ok for her in the summer – apparently they do quite well outside. And this will give her a bigger space than her indoor cage to stomp about in, as well as natural light. And an endless supply of slugs and snails and worms to snack on.

The pen itself is an 8ft by 4ft raised bed, lined with weed barrier fabric and paving slabs at the base (in case she goes digging), then with about 6-8″ of topsoil back on top. We have really heavy clay soil here – which has limited the type of plants I could put in, but I was aiming for something similar to her native environment (even though she’s probably captive bred and therefore wouldn’t know the Ozarks from a hole in the ground). So a few shrubs, lots of ground cover, and some grasses. There’s dogwood and various carex species, NZ flax, hosta and ferns, geraniums, ragged robin, violets, pansies, and some hardy succulents – and heuchera and hopefully mallow and fuschia. The idea is that there’s nothing in there that’ll hurt if she takes a bite out of it, some plants she can snack on, and plenty of places to hide. And at the same time, something attractive to look at for us humans – so probably more flowering shrubs and pretty leafy groundcover than she’d get in a properly recreated natural environment.

There’s a small, and shallow, pool at one end – with two sloping edges so she can climb in and out easily. When it’s full, there’s about 5″ of water at the deepest point. I’ve planted it up and hopefully the edges will be covered in greenery;
I might need to pick up a few more bits for this (especially as some of the plants didn’t take here)

Below is a picture of the pond – complete with flag iris in a planter. There’s lots of gravel at the edges, and some big stones to keep it all in shape. I have never dug a pond before, and I was pretty rubbish at it. You can also see a cold frame, and the slate for feeding – and the stump which will hopefully encourage creepy crawlies, give her something to scratch against, and maybe even get climbed on.

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The little cold frame recommended for tortoise pens here, in case it gets chilly; these are more traditionally used like mini greenhouses, so they’re quite warm inside. I’ve put softer soil in there – so she can dig in easily. It’s not the biggest space inside the frame, but hopefully it’ll be more of a temporary hide for chilly moments. That end of the pen gets the sun for the longest time – from sunrise through to about 4-5pm in the summer.

Here’s the cold frame – and the terracotta pot, which will be filled with sphagnum. The cold frame is raised on bricks, with a little tunnel to get in.

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Two more views below. The paving slabs on the left are both for access, and an attempt to restrain the iris monstrosity that you can just see. Steeve is in the background.

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And, to keep the dogs, and the local fox (Janice – she don’t give a fuck) out – and her ladyship in – the pen topper. This is a wire rabbit run, slightly smaller (by about 5cm all around) than the raised bed – I couldn’t find one that met the dimensions exactly – and it is pegged into the ground. I’m going to have a fiddle and see if I can’t make it extra-safe. I might also run some of that flowerbed edging around the sides if Lady Thortoise objects to the space she can’t get at.

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And here’s her ladyship herself:

Devotees and Disability

Last week, BBC3 showed a documentary, Meet the Devotees (on youtube for non-UK types). I, of course, got excited, but I’ve held off watching it because I’ve been: a) on thesis-writing deadline lockdown; b) enjoying a fibro-flare and thus trying to rest. I’m really bad at resting, resting is boring, and so is being too tired to function. So I watched it. I’m going to talk about the programme itself shortly, but first, for those of you wondering what the bloody hell I’m on about, a brief guide:

What is a devotee?

Devotees are people who have a sexual fetish for disability, usually in that they desire a visibly disabled body, and they get turned on by the scenario of having sex (or some other form of erotic/eroticised contact) with a disabled person. Devotees can be of any gender, any sexuality, and they can have very specific fetishes, or more general ones. Some devotees are turned on by the accoutrements of disability, particularly the medical aspect – devoteeism sometimes overlaps with medical play.

What is a fetish?

In this context, a fetish is a sexual desire “in which gratification is linked to an abnormal degree to a particular object” (OED, 2016) – in other words, the object or act is needed for the person to achieve erotic pleasure. The other meaning of fetish is a superstitious object (so a voodoo doll might be more properly called a fetish doll). But to unpick fetishes for a moment – fetishes are only identified when either the object/act in particular is “abnormal” (e.g. shoes, restraint, catheters), or the degree of desire is “abnormal” – so, to be a little simplistic: Person thinks red high heels are sexy: normal; Person can only reach orgasm while wearing red high heels: abnormal. We categorise certain things as fetishes, but not others – Person can only reach orgasm when their genitals are touched: normal; Person can only reach orgasm when they’re tied down: abnormal.

This rather obviously leaves a bit of room for interpretation, but in general, fetishes are only identified as such if they involve objects (aside from sex toys) or particular bodies that are already identified as abnormal. When I say bodies that are already identified as abnormal, I mean fat people or disabled people – or, arguably, children, but I want to put paedophilia in it’s own little box marked “no” for this blog, along with bestiality and zoophilia, because non-consensual sex is a whole other thing in so very many ways. The abnormal bodies I’m talking about are ones that people are not “supposed” to find sexy, or are supposed to be asexual.

So, back to devotees

In case you were wondering – this doesn’t mean that anyone who has a sexual relationship with a disabled person is a devotee. Devotees tend to be seen as “weird,” for a variety of reasons. First: they are sexually attracted to “abnormal bodies”. Second: they have assigned a sexual meaning to something that “most people” would see as asexual – a body part, object, need, or behaviour that is associated with disability, which is seen as asexual. If the devotee’s fetish is associated with caring, needs, or struggle – then this quite often comes into a third area; they are sexually attracted to bodies that are seen as infantile – bodies that need care, bodies that need other bodies to help them, or bodies that can’t do certain things. Then, finally, we have the fact that devotees are tarred with the label of “kinky” – they’re in the area of non-normative sexualities..

From the point of view of disabled people (although: not all disabled people), devotees are problematic for other reasons; firstly, because they are objectifying a person, and that can be uncomfortable for lots of reasons. Ableism already objectifies disabled people, turning them into objects of pity or care; on top of that, most fetishes are associated with objects (e.g. shoes) – and nobody wants to be a thing. This objectification can lead to the second reason: some devotees not being overly concerned about consent – in that if they haven’t declared they’re getting off on a body part, or a behaviour, and asked if you’re ok with that – and that’s not ok. This is obviously exacerbated by rape culture (which situates all objects of desire as being willing because they are desirable), and by ableism, which says that disabled people are either objects (and therefore incapable of consenting anyway), or unattractive and therefore so desperate for sexual attention that they’ll take whatever. Then, of course, there is the issue where a person is turned on by something that the disabled person doesn’t consider sexy at all – and may even find repulsive. There may be some internalised ableism here, or it it might be because they don’t find that body part or activity sexy. And finally – they don’t want to be associated with kink, because eww.

What this all boils down to is a complicated situation with multiple conflicting views. Which is an excellent point for an half-hour documentary!

Meet the Devotees

I liked it, overall. It was balanced, and nuanced, especially considering it was half an hour long. It didn’t go into some of the issues I wanted it to, but it tried to show both sides. I scribbled notes as I watched, so the following thoughts are (sort of) in order.

Porn: I’ve run across Leah Caprice (aka Paraprincess) before – she’s a disabled porn performer and sex worker. In previous research I did (unpublished; for my masters – into acquired disability and queer identity), some of her videos were mentioned by a participant because they liked seeing a disabled person being sexy, and they felt seeing her doing something sexual/erotic normalised disabled people as sexual people. While she quite clearly thinks those who buy videos and images of her doing everyday things are a bit weird, she’s also happy enough to make these videos. That said, the discussion about porn performance and “non-sexual” acts – particularly “watching the struggle,” “floppy feet,” and so on – is a little uncomfortable. Because dropping stuff isn’t sexy, nor is falling over or going down the stairs on my bum – at least not to me, and I don’t think it’s particularly sexy for Leah either. A lot of people probably wouldn’t find it sexy, but we have culturally constructed notions of what sexy looks like, and just because it isn’t normally sexy, doesn’t mean it can’t be. We have yiffing and splosh and hundreds of other things that I don’t find sexy at all, but other people do. I think this is a case of YKINMKATO (Your Kink Is Not My Kink and That’s Okay) – to be honest, as long as everyone involved is ok with it, I’m not going to object. Leah has the right to choose what she does with her body, including using her body to make money through other people’s sexual gratification.

The definite dark side: this is where I get uncomfortable and a bit angry, but probably not entirely for the reasons you’d think. Charlotte Fielder’s non-sexual photo had been lifted off one website and uploaded onto a devotee porn site – and this is not ok, and her anger and upset is understandable. However, this was presented as though it is something that only happens to visibly disabled people, and is particularly disturbing when it happens to disabled people. But it isn’t. Charlotte is understandably angry over people covertly taking her picture – and those of other disabled people – but this isn’t just something that happens for other people’s sexual jollies. We regularly see clickbait articles about non-disabled people doing kind things for disabled people, and the pictures or videos are often taken and shared without the consent of the disabled person involved (but often involving a quote from the non-disabled “hero”). What Charlotte’s experience shows is a mixture of objectification and a lack of consent – the objectification of disabled people, and a denial of our right to give consent. The focus, however, was on the sexual objectification, but not the lack of consent. The lack of consent is everything here.

Being objectified without your consent is of course going to result in emotional damage. But the culture that condones this behaviour – taking images of people without their consent, for an audience’s gratification – is rooted in ableism and misogyny, in a culture that treats women and disabled people as less that capable, and less than deserving. In some ways, because the people being hurt/objectified/preyed on are disabled we see it as worse – because ableist culture says we need protection (for our own good!), and are also not sexual beings (unlike non-disabled women, who are of course there as decorative scaffolding for their genitals). Charlotte compares it to paedophillia, and in this case, she’s not wrong – it’s predatory behaviour, and despicable and horrible. But this also means disabled people are childlike, and I’m uncomfortable with that – it’s like saying all porn encourages rape, or all kink encourages abuse. Devoteeism is not that simple – and I’d like to have seen this highlighted, or Charlotte’s simplistic portrayal of it challenged.

Negative experiences of devoteeism: the cause of these experiences are creepy devotees being creepy and horrible. That’s undeniable. However, their devoteeism itself is not the cause of them being creepy – their behaviour would still be awful no matter who they were creeping on. And their behaviour may stem from a lack of discussion in wider culture about consent, good relationships, and treating other people like human beings worthy of respect (it may not, and they might just be dickheads) – as well as from a culture with fairly narrow rules about what is and isn’t sexual. The problem of creepy devotees is twisted and arguably confused by the issue of disability – which is not to say it isn’t awful and bad, but that it is a deeper and wider problem. This is behaviour we see elsewhere – catfishing, revenge porn, fake online dating profiles, ghosting, fuckboys on tinder … the list goes on. “I want to suck on your residual limb” is a variant on the unsolicited dickpic, the upskirt photo, or the tube groper.

This is my issue with Michael First, a professor of clinical psychiatry, who also happens to be Editor of the DSM-IV Text Revision (the DSM is the standard classification of mental illnesses) – one which classed fetishes or an interest in BDSM as a mental disorder, regardless of whether everyone involved was a consenting adult. He divides  interest in disability into an orientation or fetish, saying that a fetish has the potential t be harmful, and “can interfere with the ability to develop mutual caring relationships” – which is only true because we don’t talk about consent or sexuality beyond the very normative. Kink can occur within mutual caring relationships, and if kink includes fetishes – then surely devoteeism can be a part of a caring relationship, provided it is mutually consented to. Consent is the key part. And of course if professionals in positions of power situate fetishes outside of normal relationships, they will be pushed under the carpet, hidden away – and thus they will cause harm because of course people don’t want to consent to something they think is weird.

Emily’s Video: Emily Yates, going slightly gonzo here, makes a video aimed at devotee viewers as a part of the programme – however, one of the videos that depicts a visibly disabled person going about their everyday business, albeit doing something physically difficult or awkward. Not what would be more easily recognised as porn – Emily doesn’t get naked or do anything normatively erotic. Some of the proposals made by the devotee community she’s been talking to ask for upset Emily a little (perhaps a lot) – and understandably so. Because what they’re asking for is not her doing something she finds physically easy or straightforward – but something awkward. Essentially, they are asking her to degrade herself for their pleasure – which, if we take an approach from the wider kink community, is only ok if the person degrading themselves is okay with what they’re doing, and aware that what they’re doing is both degrading and getting someone else off. Consent is key.

The Devotees: Emily – and by extension, her audience – meet several self-identified devotees, some of whom are willing to talk online, and others who willingly meet face-to-face. The man’s identity is disguised, but he doesn’t strike me as particularly creepy. When he says “a leg brace or a wheelchair is like a party dress,” it’s a little odd at first – but that’s because I, like everyone else, is not culturally conditioned to think of mobility aids as sexy. I’ll admit, my bar for weird is probably quite high, but Emily doesn’t seem phased either. The woman, Ruth Madison, is a public devotee, and I find her Sims devotee porn weirder than anything – but YKINMKATO, and just like cultural constructions say mobility aids aren’t sexy, it also says porn should involve flesh-and-blood performers and not pixels. Ruth is no more awkward or creepy than your average person when asked to explain their sex lives – because  we don’t have the cultural scaffolding to talk about this stuff – and her talking about her earliest experiences sound a lot like kink practitioners talking about their kink. She admits she likes the accoutrements of disability – but she also wants her partner to be into her being turned on by her fetish. It’s ok for them not to be devotees themselves, but they have to be ok with (if not actually excited by) her devoteeism – consent is key.

Just like Emily making her video – if lipstick and a nice bra is getting you in the mood, and you being you in a wheelchair is getting them in the mood, and you both know what’s getting the other person in the mood, that’s ok. It’s also ok to take your clothes off for money, or take a bath in custard for money, knowing other people are going to get off on it. It’s ok to be into wheelchairs or naked people (in custard or not) provided everyone involved knows what’s going on.

Creepy and predatory devotees are a problem. Any and all creepy, predatory behaviour is a problem. Creepy, predatory behaviour doesn’t respect consent – doesn’t even consider it – regardless of whether the target is disabled or not.

Ultimately, the documentary didn’t make enough of two things: the need for communication and consent in our relationships, and the cultural construction of what constitutes “normal” sexual behaviour. Both of these underpin why devoteeism is seen as “bad” or “weird”, and why disabled people are often uncomfortable with devoteeism and devotees. It’s something that needs more discussion about, from all sides.

 

 

 

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.