Category Archives: disability

“he was laughing, so so can we”

I got back from our family holiday on Friday and immediately dived back into the Paralympics. I loved watching the Paralympics. I loved almost everything about it. Before it started, I was a little leery of the “superhumans” title Channel Four were using, although I did like the advert campaign . I enjoyed the sports themselves – and while I was overseas, I did enjoy hearing that Gideon had been booed [Guardian link].

Stickman cartoon of three disabled paralympic medalists on a poduim - one in a wheelchair, one without a visible disability, and one dwarf - being cheered by a crowd. The quote reads "Once you've put someone on a pedestal you can't look down on them" , and was said by Adam Hills during an episode of the Last Leg.

“Once you’ve put someone on a pedestal you can’t look down on them” – Hannah Ensor’s cartoon illustrating an Adam Hills quote – via twitter

But I have to admit, what I’ve really been enjoying is The Last Leg [Channel 4 link]. I’ve been a fan of Adam Hill for a while – there’s a copy of his show Characterful/Joymonger on youtube (unfortuntely not subtitled) – and I find his approach to disability refreshing. If you haven’t seen it, The Last Leg was a fairly standard comedy-chat-show formatted short piece, that focused on the day’s events at the Paralympics, with guest athletes, and manages at once to be utterly irreverent and wholly celebratory of disability – it laughs at non-disabled people’s assumptions and occasionaly squeamishness, while also laughing at itself, at the experiences of being disabled. They talk about disability – the clip of Jody Cundy and Adam Hill talking about prosthetic legs is refreshingly honest and matter-of-fact – and demonstrate that, just like every other aspect of life, there will always be jokes to be made and things to laugh at. In many ways, The Last Leg reminds me of Disability Bitch [twitter link], albeit without some of the snark (and I do love her snark). The introduction of the #isitok hashtag [twitter link] to ask those questions you think of but aren’t sure if they’re appropriate was, frankly, a genius idea – because unless you are yourself disabled, or know a disabled person well enough to ask about their disability, sometimes you really can’t understand what it means to be disabled, or how to approach something. It’s a fact of life that being disabled makes some other people uncomfortable – and sometimes we do laugh at their discomfort, because otherwise rage is the only option. I admit, some people – as Allen Johnson [wordpress link] has said – have been asking stupid, offensive questions on the hashtag. Because some people are dickheads. But what I’ve also seen is the number of people appreciating having the space to ask these questions, and others appreciating the humour and joy in the show.

 

This does tie into my writing, honest. One of the things I found in all three interviews was humour – we laughed at the silliness of the things people say, or do, or the things we find outself doing and saying; we didn’t always laugh at disability – because disability isn’t a bundle of laughs all the time, and sometimes the humour was a little bleak. But there was laughter.

 

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Participants Needed

I’m looking for 4 or 5 disabled people who identify as gay, lesbian, bi, queer or trans to participate in individual interviews about their experience of sexual and/or erotic pleasure, particularly in relation to how their identity as, and lived experience of being, a disabled person affects their experiences. The interviews will be the research for my MSc dissertation in Gender and Sexuality.

If you think this is something you’d like to do, please read on – please pass this on to your friends and acquaintances as well.

If you would like to participate – or would like to ask me any questions, please email me at eshepp01 [at ] mail.bbk.ac.uk or leave a comment in the box below with a way to contact you (comments are not automatically published, and I will not reveal your personal information).

About You:

  • You must be 18 or over at the time of interview.
  • You must identify as disabled, with part/all of your impairment(s) affecting your mobility and/or range of movement or motor control; you can have multiple conditions (I include chronic illnesses and pain within disability).
  • You must be sexually active – either currently or in the past. It’s up to you how you define sexually active, but if your disability/impairment is acquired, you must have been sexually active since that point. I include solo sexual activity – i.e. masturbation – as sexually active, but if you don’t, that’s ok too.
  • You must identify as Queer, Lesbian, Gay, Bisexual, or Trans.
  • You’re happy to talk about having sex, sexual and erotic pleasure, and your disability.
  • You live in the UK.

The Interviews:

Face to face interviews will be conducted in a location of the your choosing, if both you and my own access requirements can be met (including the services of a BSL interpreter if necessary; I do not speak BSL to anywhere near an appropriate level). Unfortunately, I’m not able to travel far outside of London, but I will make every attempt to do so if possible. . Otherwise, interviews will be conducted via Skype, or through e-mail, depending on your preference.

The interviews will be recorded, and you will have the opportunity to review and revise the transcripts. I think the interviews will take an hour or thereabouts if done by Skype or in person, and email interviews would involve maybe five or six emails being exchanged. I am also happy to do the interview through instant messenger if you’d prefer.

I am happy for you to have your assistant present if you wish, or a translator if you prefer to speak BSL or a language other than English. While I’m not able to pay you to participate, I am happy to cover the costs of a translator.

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.

  • Does your disability affect your current sexual/intimate relationship(s) or activities? How?
  • Does your disability affect forming new sexual relationships? How?
  • Do you think your impairment has changed how you approach or go about sexual activity? If you have always been disabled, or were disabled from childhood, do you think your disability affects your sexual activity?
  • Does your disability play a role in your sexuality or how you see yourself as a sexual person?
  • Has their impairment changed how you view and/or express your sexuality?

The following biographical information will be collected as well:

  • Age, Gender, Sexual Orientation, Ethnicity
  • Impairment/disability
  • Age of impairment occurring/developing
  • Do they have/need a carer or personal assistant, if yes, is that person(s) a relative/friend, or an employee?

Getting In Touch:

If you would like to participate – or would like to ask me any questions, please email me at eshepp01 [at ] mail.bbk.ac.uk or leave a comment in the box below with a way to contact you (comments are not automatically published, and I will not reveal your personal information). I can also be reached on twitter, if that’s your thing.

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Participants and interviews.

Being mildly forgetful, I forgot to record the presentation I did last week at uni, on my dissertation. It wasn’t particularly long or in-depth, but it would have made a good post. Oops. If anyone is interested, please let me know and I’ll send them a copy, complete with notes – I am working out how to put the powerpoint online with all the notes; I’d use Prezi, but it makes me nauseous, and I’m not sure how well it goes with text-to-speech readers. If anyone has any suggestions, I’m all ears open comment box.

 

On to other things. I’m still waiting for ethics clearance from Bickbeck to start interviews, but hopefully I should hear soon-ish. By the end of July at the most; this has meant I’ve started to think about contingency plans, as that will only leave me six weeks to find participants, do the interviews, and write everything up – and I’m very aware that trying to rush things is not only bad for research, but bad for my health and sanity. Having said that, if you, dear reader, think you’d like to be a participant, let me know – these are my criteria:

  • You must be 18 or over at the time of interview.
  • You must identify as disabled, with part/all of your impairment(s) affecting your mobility and/or range of movement or motor control; you can have multiple conditions and I include chronic illnesses and pain within disability.
  • You must be sexually active – either currently or in the past. It’s up to you how you define sexually active, but if your disability/impairment is acquired, you must have been sexually active since that point. I include solo sexual activity – i.e. masturbation – as sexually active, but if you don’t, that’s ok too.
  • You must identify as Queer, Lesbian, Gay, Bisexual, or Trans.
  • You’re happy to talk about having sex, sexual and erotic pleasure, and your disability.
  • You live in the UK.

 

I am restricting participants geographically in part because I think that the institutions and systems that regulate and affect disability are geographically-specific; access to medical care is different in the UK to the US, for example, and this influences how disability is viewed and thought of. It also means that, while I don’t think I’ll be able to do all the interviews face-to-face, I will at least have a chance to try to do so. Futher to that, while face-to-face interviews are arguably the norm for this sort of thing, I am limited myself in terms of access to transport – partly due to expense, partly to do with my own disability making longer-distance travel difficult – and so interviews will be conducted through Skype or email where face-to-face meetings aren’t possible – you’ll get to say which one you’re more comfortable with, and obviously, all interviews will be recorded and there will be informed consent forms to sign. If you have a carer or personal assistant, I am more than happy for them to be present if you wish – however, they will also have to sign consent forms; if you need a BSL or other language interpreter, there will be forms for them too (and I’ll be meeting that cost, even if you have someone you would rather bring).

The restriction to disabled people whose impairments affect their mobility is more complicated. In part, it’s purely logistical – this is only a MSc, and so my focus needs to be relatively narrow in order to be manageable. Then, more selfishly, I’m more familiar with mobility problems – I would say that I have issues with my mobility and range of movement – and so I’ve got a more vested interest. I’m not sure if this will make be a better researcher, but it will mean that I’m more in my comfort zone than if I were discussing queer sexualities and intellectual disabilities – both in terms of knowledge and my own empathies. While I do need to challenge myself, I don’t want to challenge myself too much – or do a disservice to the people who are taking the time to talk to me.

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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