Category Archives: sexuality

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.

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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