Tag Archives: disability

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).

***

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.

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.

 

 

 

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).

A sweary reflection

It’s been a little over a year since I’ve started my PhD. It’s been, well, mostly good. The panicking, the crying, and the sense of despair have been balanced by the joy of good feedback, a sense of achievement, and above all, doing what I actually love, even when I bitch like hell about it. Because even doing things you love can seem like a pain the arse when you’d really like to be doing that other thing you love which doesn’t have a deadline.

Doing my PhD has already taught me a few things. It’s affected my fibromyalgia – and been affected in turn – in new and interesting ways. As well as some old and frankly boring ones. I’ve met some lovely people, online and at conferences and talks, including the awesome people who volunteered to let me into their lives and be participants (and answer some really weird, nosey questions). I’ve been introduced to some ideas that I’ve loved or hated or just made me think, that have changed how I’m approaching my research entirely, or confirmed some of my suspicions that while I may or may not be barking up the wrong tree, I am not the only one doing so. It’s been awesome.

And, in the grand tradition of avoiding doing some work, I’ve made a list of the things I’ve learnt.

1. Say no

Whether it’s because you don’t have the time, or because you straight up don’t want to, say no. I’ve got shit to be getting on with. Sometimes that shit is sitting on the sofa, eating crisps, and doing sweet fuck all, but still, I’ve got shit to do. I have finite energy – you do too, even if your reserves are decidely larger than mine – and I have learnt that I can’t do everything that everyone wants me to do. So I have to say no – whether it’s to going out with friends (it frequently is, and my friends are the best for understanding this) or reading a book or travelling to an event. Most people have been understanding.

This is why I’ve quit my job, at least for the rest of the year, to focus on my PhD. I do, mostly, like teaching. However, this particular teaching role was throwing up demands on my body and mind that were impacting my priorities in life – I have been bitchy and I haven’t had the energy to be the person I want to be, or to do the things I want to do – or even the things I need to do. I’m lucky; G is immensely supportive, hugely helpful, and he does the hoovering. I like the income. But I need to refocus and get on with my research and my writing, and teaching EFL to teenagers wasn’t helping. So I’ve quit and it feels great.

2. I don’t need that in my life

If you can’t acknowledge that I might know what I need or want, and that I do know what I’m doing – or, conversely, that I still have the right to go ahead and do it anyway – then I do not need you in my life. If you can’t get over my disability, I do not need you in my life. If my disability (or whatever) is such a barrier to our friendship, or you employing me, or you speaking to me politely – guess what? I don’t want to be your friend/employee/colleague/whatever. So long, farewell, fuck the fuck off.

Seriously though. One of the bits about radical self care is this: don’t feel you have to keep someone in your life if they’re sucking your soul. Which is not to say I’m going to dump friends just because they’re having a shitty day/week/year; we all do, and sometimes depression makes everything harder. But it is to say that I don’t need sources of hate in my life, and I can’t win everyone over to the dark side with the power of my personality and swear-filled arguments, so I will choose my battles and my friends.

3. Say yes

Having just said all that – I have learnt to say yes. Yes to the things I want to do, the things I need to do, and especially to the things that mean I’ll be utterly useless for days after but I hope it’ll be worth it. I don’t always say yes – but I try to, especially when it’s something that might be fun, or open my mind.

4. Down time is sacred

I have a rule: unless there’s something urgent that needs to be done by tomorrow (or worse, by yesterday), I always have a few hours to watch TV, knit, cook, walk the dogs – time to live, in a quiet, low-energy way. G and I have some tv programmes we watch together – I have several I watch alone. I like cooking dinner for us. We can talk and eat and bitch about the things that need bitching about, and it helps keep me from going batshit insane.

5. Own your weaknesses and limitations

They’re not something to be ashamed of. And in talking about it, I’ve found other people will also talk about it. I hope that, maybe, it’ll help someone else decide they can do a PhD and see that it’s not all stress and working yourself into the ground and crying. Sometimes it’s fun and the hard work is manageable, and you can do it while being chronically ill and constantly shattered. Or at least you can do the first year. Fuck knows what the rest is going to be like.

 

 

Participants needed

I’m looking for 8 – 12 disabled people who use kinky play in their personal lives, to take part in some interviews and keep a bimonthly diary for me over a few months. This will form the research for my PhD.

I am looking at experiences of pain for people who experience chronic pain, but who also receive (or have received) pain as a part of their sex life – from spanking to needle play to flogging, as long as you play with pain, then it counts. What I’m exploring is how we talk about pain, what we mean by pain, and how we understand pain from a social standing. I’m hoping that, in looking at pain from a disability/impairment viewpoint alongside pain that people seek out, I will learn something new about pain, and be able to develop a theory.

If you think talking to me is something you’d like to do, please read on – please pass this on to your friends and acquaintances as well – you never know who might be interested. If you don’t want to, or can’t, be interviewed, you can still help – by passing this on, tweeting about it, or even forwarding it on to someone.

If you would like to participate – or would like to ask me any questions, please email me at: emma.sheppard@go.edgehill.ac.uk .

 

About You:

  • You must be 18 or over at the time of interview;
  • You experience chronic pain – the exact type, or reason, is not important (though we will talk about it);
  • You currently, or in the past, have consented to receiving pain as a part of sexual or erotic play (but you don’t have to identify as kinky or a BDSMer), and this is something you enjoy;
  • You’re happy to talk about your experiences of pain, sex, and sexuality;
  • You live in the UK.

 

The Interviews:

Interviews can be held over Skype, by email, or face-to-face – it’s about how you’re comfortable talking to me, and meeting your accessibility needs (as well as my own). Face to face interviews will be conducted in a location of the your choosing. If you need assistance, please feel free to bring along someone to support you – and let me know if you need any other support, such as an interpreter, or large print copies; I’m disabled myself, so I know how important it is to have what you need in the way of support.

Unfortunately I am not able to pay you for your time. There will almost certainly be cake though.

This is the big commitment – I’m going to want to interview you three times over about a year; for the first six months of that, I’m going to ask you to write a short diary entry twice a month. The first interview will be about an hour in length, and I’ll take a short life history, and then ask you some pretty open-ended questions (you can see those below). Then I’ll ask you to start keeping the diary entry – written, recorded, however you’d like – twice a month. After six months, we’ll talk again, this time for a couple of hours, and we’ll go over your diaries and things you said in the first interview. We’ll see where the conversation takes us – I’m interested in your experiences, so there’s no answer I want to hear.

Both interviews will be recorded, and I’ll then write them up, along with some notes and thoughts about your diaries. I’ll ask you to take a look at them, and in our final interview, I’ll ask you to reflect on what we’ve talked about. This is really important, because it gives you a space to tell me your thoughts and what you thought about taking part as well. Last but not least, you’ll be able to read over all three transcripts and my initial notes, and tell me if you’re happy with what I’ve got, which is when I go away and write my thesis.

Any information you give me will be made anonymous in any resulting publications – I’ll change your name, and try to keep any personal details as vague as possible.

Please get in touch if you have any questions at all! My email address is: emma.sheppard@go.edgehill.ac.uk , or you can get hold of me on twitter, @_ESheppard.

If you’d like to discuss this research with my supervisor, Paul Reynolds at Edge Hill University, he can be contacted at: paul.reynolds@edgehill.ac.uk

 

The Questions:

The basic questions will be the same for all participants, however, the direction of our conversation will be guided by your answers and what you want to talk about; I might have other questions, depending on what you say. You do not have to answer any question you are uncomfortable with, and I will stop or pause the interview should you wish.

The interview data and transcripts will be made anonymous in the final dissertation, and any other publication resulting from this work.

The following questions will be the initial “starter” questions, although some may not be relevant to you.

  • How do you describe your chronic pain?
  • How long have you been interested in BDSM? Was receiving pain a part of that from the beginning?
  • Do you use pain regularly in your play?
  • How does that pain feel?
  • Can you compare your chronic pain and your play pain?

The following biographical information will be collected as well:

  • Age, gender, sexual orientation, ethnicity
  • Impairment/disability
  • Age of impairment occurring/developing
  • Educational level
  • Where you’re from
  • Do you have/need a carer or personal assistant, if yes, is that person(s) a relative/friend, or an employee?

 

About Me

I’m a PhD student at Edge Hill University, and I currently live in London. I have fibromyalgia, which means I have chronic pain – among other things. I’m not currently active on the scene, although I am personally familiar with BDSM.

My background is in the social sciences, I’m interested in issues of gender, sexuality, and disability more generally – I’ve researched how queer and LBGT identities interact with disability in the past, and my interest in looking particularly at pain in what seems to be two very different situations grew out of that. I’m hoping that this research, as well as developing a bit of theory about experiencing pain, might help influence some research that can be put into more practical use for pain management – or at least change a few minds about how we think about pain.

 

 

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.