Tag Archives: research

#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.

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.