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.