Category Archives: understandings and knowledges

Long time no post

It’s been a while. That’s mostly my fault – I should be keeping you updated more. I’ve fallen behind with posting for many many reasons – at first, it was because I was teaching at a summer school (doing research I love doesn’t always pay well, and I find it hard to work during term-time, as excessive  business makes my fibro flare more). This meant, in part, that I was only able to focus on the dissertation for part of the day – and meant I was juggling a number of trains of thought at once – while I love teaching, it does tend to take over my brain. It takes me a couple of weeks to get out of teacher mode too – I find myself using the “irritated teacher” voice on my housemates and explaining things a lot more than I need to.

The second reason I’ve fallen behind actually relates to my research. I interviewed three very lovely people (they know who they are, and how much I’m grateful to them, which is a lot) and it took me rather longer to transcribe the interviews than I thought it would – partly because I massively under-estimated how much we’d all talk! Which is why I’ve decided to stick with just three participants – that and their disparate personalities and the experiences they’ve shared with me has made for quite a diverse little group; not as diverse as I’d like, perhaps, but then again, that was in part the luck of the drawer and my own shortcomings. I’ll have to write more about that.

All the same, thank you to the three participants, and to all the people who got in touch to ask if they could take part. You’re all awesome people.

Since then, I’ve been in a bit of a tizzy over actually writing this all up – I’m handing my dissertation in at the end of September, and it feels very much like I’ve got more to do than I could ever manage – which has led to a few stress-triggered flares and some moments of mild hysteria directed at the dogs or my partner. But it progresses. I’m lucky – I’m writing this from the living room of a villa in Portugal my father-in-law has hired for the week, to celebrate his retirement, and when I”ve written a bit more of my methodology and this post, I’ll be sticking myself in the pool and letting my joints relax a bit. While slathered in suncream.

I’m not going to share too much with you all about what I’ve found – until I’ve handed it in, of course. But so far, I’ve got some key themes that have come out across all three interviews, to various extents:

  • sex and pleasure (and relationships)
  • sexual and disabled identties, and how they interact
  • kink, fetish and porn
  • access and social issues, some of which directly impact sexuality and sexual pleasure
  • living with impairments – what I call the embodied experiences of impairment – and how that impacts sex and relationships and everyday life
  • medicine and care – everything from medications influencing sexual function to how partners become carers

I’m finding the medicine bit a little difficult, in part because rejecting the medical model is so much a part of my political stance, but it doesn’t fit so neatly within the other sections. I think, however, if I’m going to critique the social model for not including the body, then I need to also acknowledge that medicine and care does play a part in disabled people’s lives, to varying levels – and not necessarily negatively all the time; sometimes medicine is a good thing and sometimes we do need someone to help us get into the bath.

Right. Dissertation writing. Off I go. There is some cheese in the fridge calling to me and I want to write a couple of thousand words today before I go tread the fine line between irritating my overly sensitive skin with chlorine, and getting some of the pain to go away for a bit.

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Pain and Disability

One of the themes that my reading keeps throwing up is questions about whether or not chronic pain and chronic illness counts as an impairment and/or disability. There seems to be quite a bit on either side – and the in/validity of pain seems to be a point.

I’m coming to this with some rather obvious biases. I have fibromyalgia – for a medically-flavoured summary, the wikipedia page is pretty comprehensive; I wrote on my personal, sweary, blog about what fibro does to me a while ago – and the major symptoms are pain and fatigue. It’s super-fun. For me, the fatigue affects my mobility – when I’m tired, I get slow, and my balance starts to go a little. Because of the balance, I use a walking stick that folds up when I don’t need it. When I don’t need the stick, I pass as non-disabled; using the stick marks me as ‘disabled’ to many. I’m not going to go into the practical issues of passing as disabled or non-disabled at the moment, although the implications are pretty important. I’m mostly explaining my biases because they do affect how I approach different understandings of what it means to be disabled.

As I said in an earlier post, Susan Wendell’s Unhealthy Disabled: Treating Chronic Illness as Disability (article link) was one of the first pieces of academic writing I read on the subject of disability (outside of a couple of asides in other texts). I was frankly relieved to find writing that reflected my personal experience of chronic illness as impairment – and that supported my view that it was a disability. I’ve read a bit more since then.

More recently, I picked up Deborah Marks’ Disability: Controversial debates and psychosocial perspectives (1999, Routledge). It made for an interesting read, especially as it came from a different starting point from other texts on disability; her points about prosthetics and aids being a part of the body were especially interesting. However, Marks contested that chronic pain is not as bad as acute pain – or as serious; her writing seemed to dismiss chronic fatigue as ‘nothing too serious’ (obviously, I’m paraphrasing here). I tend to find, when I read something that I disagree with so hugely as I do with this particular part of Marks’ writing, I struggle to read the rest on its merits – my disagreement colours the rest of my understandings.

For me, pain is not something that can be judged as “worse” or “less relevant than” other pain, unless we are talking about an individual’s experience of pain. Breaking my arm hurt worse than a headache (to take an entirely facetious example); this is not to say that breaking my arm hurt less than you breaking your arm, or that my headache hurt worse than your headache – while we can make generalised assumptions about things that hurt more (breaking an arm versus stubbing a toe), we cannot quantify individual’s pain against another, because we judge “how much” something hurts by what we have experienced previously. Medically speaking, chronic pain is not the same thing as acute pain – and experientially speaking, they are not the same thing. To say that one is worse than the other, however, is dismissing the experience of chronic pain sufferers – and to do the same as many others, tell them “it’s all in your head”.

John Swaine and Sally French’s Towards an Affirmation Model of Disability (2000, Disability & Society 15.4, pp.569-82; article link) proposes a model of disability that includes the positive aspects of being disabled – a non-tragic view that celebrates disability, developing from a Disability Arts approach. It’s critique of the Social and Medical Models is valid; neither do include positive experiences, or have much space for acknowledging the fulfilling lives disabled people lead. But it stated that chronic illness and pain “are neither impairments nor restricted to the experiences of disabled people” (pp. 571-2). Yes, illness and pain are experienced by non-disabled people, and by disabled people too, and not all chronically ill people consider themselves disabled either. But chronic illness can be hugely impairing – and it can have the same impact; spinal injury and CFS can both result in the impaired person having to use a wheelchair to be mobile. At this point, some of the disablement they experience is the same – it doesn’t matterwhy you use a wheelchair, if the ramp on the bus is broken, you can’t get on the bus in your wheelchair.

If disability is largely based on experience – whether positive or negative, and whether you’re using the social or affirmative model – then we cannot say “your experience was not disabling, because I don’t think your impairment is valid”. In many ways, it’s the how of disablement that is more important than the why of someone being in the position to be disabled; we cannot change the root of impairment – even if we can medicate and counsel and provide aids and prosthetics and physical therapy to alter and improve the functioning of the body, the impairment cannot be changed completely. Someone with bipolar may be able to take medication that enables them to be “normal”, and they can pass as mentally healthy – but societal attitudes to mental health can still disable them. I can use a walking stick, but if I’m too exhausted to take the stairs, the lack of a lift still disables me. A child with learning difficulties can go to school, but will be disabled by not having suitably trained teachers or accessible learning material or by the attitudes of their peers. Saying that an impairment is not an impairment because non-disabled people can experience it – well, I can experience being in a wheelchair if I break the right bones. That doesn’t make others impairments and their disabling experiences less valid; silencing some people’s experiences doesn’t make yours the only experiences there are.

All of this is thinking – and my experiences – have affected how my research will happen. I’m interested in the experiences of people who identify as disabled – because I don’t think there’s a simple way of saying “you’re disabled enough, but you’re not”. If you say you’re disabled, I’m going to accept that, because your experiences are not mine. I know that chronic illness and pain can affect mobility and range of movement – so, for the purposes of my research, if you identify as disabled, and have limited mobility and/or range of movement, then your experiences are relevant (provided, of course, you meet the other criteria – of being a sexually active adult who identifies as queer/lesbian/gay/bi).

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The root of all this

“And it is sometimes hard to tell the difference between someone’s mismanaging her/his own energy and other people’s failure to accommodate her/his impaired energy. Even those of us who have lived a long time with chronic fatigue cannot always tell whether we are not trying hard enough or experiencing a physical/mental limitation, whether we need inspiration, self-discipline, or a nap.” (p. 26)

Susan Wendell, 2001. Unhealthy Disabled: Treating Chronic Illness as Disabilities. Hypatia, 16.4, pp 17 – 33

BRB, just embroidering this on a sampler.

Although, in genuine honesty, this paper was the first I ever read on the subject of disability, back when I was just getting interested in looking at my own disability, and the quote above made me grin and go “someone else gets this! And if they can be a proper academic, so can I!”

 

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Defining myself (also: first post!)

I ‘ve been trying to make a start on this blog for a while now – I got it set up and then flailed my way through a PhD application, which set off a fibromyalgia flare. Yay. Apologies if this doesn’t make much sense then; I think the flare is on the way out, but it’s got to the dodgy headache stage where I’d rather be hugely hungover.

I’ve been thinking recently about how to make my research accessible and emancipatory, in part triggered by a discussion on the Disability Research discussion list, and in part triggered by working on my methodology. I’m debating on whether or not to include pictures on here, or to use videos as well, but right now, I think I’ll stick with text only. Tell me if you think I should do otherwise – or if you’re having any problems with this site; wordpress seems pretty accessible, but I don’t use adaptive or read-aloud software regularly (and besides, my version of Read&Write Gold appears to not recognise this version of Firefox). Please, please, please – tell me if you are having problems with the site. I will try to fix them, or do things differently.

For me, accessibility and emancipatory research go hand-in-hand; you can’t have one without the other. I’m aware that making my research accessible through the Internet is in itself problematic, however, for a short-term project, it suits my needs – and my complete lack of funding. Obviously, my research in UK-centric; I’m not aiming for it to be anything other, and I’m very aware of the limitations in this – and in using terms and understandings of both disability and sexuality that are based in western conceptions and understandings. At the same time, making research that is truly global is, for me, not entirely appropriate either – the nuances in how we understand concepts of disability/impairment and sexuality, and other parts of identity are geographically linked, and the awareness of those differences is central to emancipatory research; research which accounts for these differences is beyond the scope of both my research and my abilities.

That’s that then.

This means, however, that in my research I have to identify how I define disability and queerness for myself; this will impact my research, but people who choose to particpate will be influenced not only by my understandings, but by their own – being disabled means different things to different people.

I define myself as disabled; I see a difference in disability and impairment as well. My impairment is twofold: I have fibromyalgia, which affects my energy levels, causes me to be in pain, alters my mobility, and affects my ability to think clearly and express myself (particularly during the worst of my flares). I also have depression, for which I take medication. However, I did not define myself as disabled when depression was my only impairment; I knew it caused me problems, and I knew other people had issues with people with mental health problems, but it wasn’t particularly important to me – I took my meds and only told people when I wanted or had to, and I carried on in my own way. Fibromyalgia changed that – it affected not only how I lived my life, and how I did things, it affected the way I look, the way I walked and spoke and what I stuffed in my handbag and ate and drank and on and on and on. This, for me, is key to my understanding of impairment: my impairment, my fibromyalgia, affects my day-to-day life no matter how many adaptations are made, no matter how many lifts and ramps and dimmed lights there are, no matter how many pills I take; it is an embodied experience that is central to my understanding of what makes me who I think I am.

Disability is different. I can have an impairment without being disabled – because it’s everybody else, everywhere else, everything else, that disables me; I am disabled by everything beyond my own skin – until, of course, I internalise oppression and start disabling myself. This understanding of disability is – and quite obviously – aligned with the Social Model. I identify as disabled because I have experienced and acknowledged my disabling by social and cultural factors – everything from the counsellor who told me it was all in my head, to the man who stared at me and my stick on the tube but didn’t offer me his seat, to having to make the decision between hauling my exhausted limbs up a flight to stairs or walking hundreds of steps more to reach the ramp hidden round the back of the building.

So how do I consider whether or not others are disabled? I ask them – or rather, I leave it up to them to identify themselves. I’m aware that people can have invisible disabilities – how can I not be, I have one myself – and I’m aware that not every person with an impairment wishes to be called disabled, to call themselves disabled, for whatever reason they may have, and I have to respect that in the same way as I have to respect every other part of them.

The same goes for sexuality. I’m using “queer” in this project’s title because, for me, it is the broadest umbrella term that encompasses a wide range of sexualities and sexual identities. It excludes heterosexual people. It undoubtedly excludes other people too, which is why I am including a definition of queer as “everyone who does not identify as straight or heterosexual or exclusively attracted to people of the opposite gender identity” – which is far too clunky to put in a title, even an academic one. I’m not sure if I’d include “kinky” in with “queer”. Probably. Maybe. If the kinky-identifying person also identifies as queer/not heterosexual themselves.

So there we go, some definitions. This is where I’m coming from. Where you’re coming from might be the same, but it might not be; I don’t want you to think like me, but I do want you to understand my position, and I want to understand yours too.

And now I really need more tea and painkillers.

 

 

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