Tag Archives: blogging against disablism day

#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.

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.