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.