Category Archives: uni

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.



Dissertation (again)

Right. Dissertation has a blog of it’s very own – Silenced Voices.

Enjoy. Tell everyone even if you don’t enjoy. Excuse me while I drink more lemsip and get snot everywhere.

Sex and Disability (a.k.a. Dissertation Fun Time)

After handing in my final essay last week – and taking an entirely reasonable week off – it’s time to start playing with my dissertation. What I’m looking at hasn’t changed since I handed in my proposal; as it’s Blogging Against Disablism Day, I thought I’d blether a little more about it.

I have chosen to look at experiences of erotic/sexual pleasure in queer disabled people, specifically in how those experiences are changed – or not changed – by an acquired physical disability. Obviously, this is heavily influenced by my own experiences of disability, but I’ve also realised it’s important for me in other ways.

I’ve recently seen a lot of things – particularly on tumblr – saying that feminism is not engaging with disability; I think a lot of these posts do the disservice towards disabled feminists that they are accusing feminism of doing towards them – making massive over-generalisations. Feminism isn’t perfect, but it has made huge leaps in terms of inclusion and intersectionality – and while most intersectional feminism is primarily concerned with race and class, there is a growing awareness of disability, particularly in academic feminism. To take last year’s SlutWalk in London – the march had speakers from WinVisible (and has an event this friday – The Visibility of Women of Colour in SlutWalk London) posted accessibility information online, and had BSL interpreters on stage. Obviously, not all feminists are brilliant when it comes to disability; I’m not perfect, and I’ve undergone a learning curve as well. But forcing feminism to interact with disability is important – and in academia, it’s obvious that a lot of disability studies is influenced by feminism and feminist thought; I want my research to be both useful in terms of disability studies, but also for feminism – I’ll be using broadly feminist research methods, acknowledging and foregrounding the importance of intersectional identities alongside lived realities to examine the usefulness of theories of disability and sexuality and sex.

There is still very little on queer disabilities and sex. There often seems to be this point where you can be queer, or disabled, but not both – and you can’t have sex. Sex is complicated by disability, sex is complicated by sexuality, and so disabled sexualities are just plain messy at times – but they are less messy when it’s considered a normal part of life. While The Undateables was deeply problematic in so many ways, it also highlighted that disabled people are also sexual beings, who seek relationships with other people who are romantic and/or erotic (of course, aromantic and asexual people can also be disabled). Being disabled doesn’t turn you into a genitalia-free doll. Giving a space for to counteract this discourse, in which queer disabled people can talk about sex and pleasure is a key part of why I want to do this dissertation on the subject.

Once I’ve got ethical clearance from uni, I’ll be putting out feelers for interviewees – I’m trying to work out how to make the interviews as accessible as possible for both myself and the participants, given that I need to record the interviews (so the phone is out) and that I don’t have much any money for interpreters or travel. I’m hoping to use email or online messaging when face-to-face interviews aren’t possible – other ideas are welcome, of course. And I’ve got to speak to my uni library and see if the interlibrary loan limit can be increased, so I can get at some journal articles without having to use the British Library – which, while wonderful, is restrictive – my memory being shite, I need to make notes as I read, which isn’t possible there. I’ve also had to order some books from the British Library – the uni library isn’t particularly well-stocked when it comes to disability (nor is Senate House – which is annoying as hell; also, their access sucks balls at the moment – I hate having to ask to use the lift and being taken up to the seventh floor in this tiny claustrophobia-inducing service lift – you wouldn’t get a wheelchair in there – like I’m a naughty child being escorted to the headmaster’s office) and access to other uni libraries is restricted during exam season.¬† Bloody libraries. Thank fuck for e-books and journals I can access. I need to see if Senate House or Birkbeck will get a subscription to Disability and Society, because fucking everything I want to read is in there. All of it. Well, half of it.

Rambling about gender studies

Do you remember Tom Martin, the man who is suing LSE for “anti-male bias” on its Gender Studies course? No, stop giggling at the back. He’s serious. But I’m not talking about Martin, who is frankly a bit of a twit (the moment I read he’d only been on the course for six weeks – and tweets as “the missing minister for men” – I have to admit to dismissing him as an idiot). But a conversation at uni reminded me of him.

I’m just over halfway through a gender studies masters – not at LSE, but at Birkbeck (LSE was too expensive for me, and Birkbeck suited my needs as far as disability and work), and a few weeks into a new module with a new lecturer. The students are a mix of gender studies – second year part-timers like myself and single-year full timers – and people from other courses who have chosen the module as an option (it’s compulsory for those on gender studies in the MSc stream, however). Those who’ve chosen the module are studying masters (or PhDs) in a variety of subjects, from education to identity to journalism. Basically, we’re a right mix.

Our lecturer has asked for feedback from the outset – rather than waiting for the end of term formal feedback – which is brilliant. And she’s acting on it, which is even better. Last week she brought up an issue an anonymous student had raised – that there wasn’t enough on men and masculinities in the lectures. The course is called Theorising Gender, and we do study masculinities and men, for what it’s worth – but in the relatively new field of gender studies, masculinities is a yet newer field – it really hasn’t been looked at very much or for very long, much in the same way whiteness hasn’t been studied as much when looking at race and identity. Because masculinity is so often taken as the norm – maleness as default, the man in mankind that erases everyone who doesn’t fit a mould of a particular type of hegemonic masculinity – it was seen as more important to start looking at all those experiences that have been erased and ignored, and as theories and knowledges have developed, so it has become possible to look at masculinity, now that the framework exists. As a result of the way studies of masculinity grew out of women-focused gender studies, it is really difficult to run headlong into looking at masculinity without first having at least a dabble in the earlier work. It’s like trying to read Butler while pretending Foucault never existed – or trying to make bread while ignoring the existence of wheat.

And sometimes it can appear that there is not enough on masculinities. Especially when you’re looking at the home – as a traditionally feminine area, of course most of the writing looking at the home and gender is going to look at women – but they still refer to the roles of men as well. But – and it’s a massive but – to return to the anonymous complaint, the overwhelming response was “someone hasn’t done the reading”. Required reading for the first lecture was as chapter from R.W. Connell’s 1995 book Masculinities. The other two pieces looked at both masculinities and femininities. The second week, most pieces also covered men and women – and in the case of the introduction to Gavey’s Just Sex? The Cultural Scaffolding of Rape (2005) was partly arguing for a reconceptualisation of rape in order to better include the experiences of male victims.

The third week – and I’m sure you’re getting the picture here – two of the four required pieces were explicitly focused on men (Gorman-Murray’s 2008 article on masculinity and the home, and Kilkey’s 2010 paper on men and migrant care), a third included men, but focused on women, and the fourth was explicitly about women – Oakley’s seminal Housewife, from 1976.

Anonymous complaining student can fuck off. And do the reading. And if they don’t like it once they’ve actually paid some attention, they can start with the recommended reading – and then move on from there. Finding books and journal articles that look at men and masculinities isn’t difficult, and frankly, as a masters student, if they haven’t learnt to use the library yet, they may wish to either do so, or have a think about what they’re doing.

And now I’ve finished rambling – I’m going to take my own advice, and do some fucking reading.