The D Word

Isn’t it just marvellous when you spend a whole week trying to find something vaguely light to write about, and then you give up because something better and more important turns up? If you were expecting something more fluffy this week, trust me, so was I, but like I say, this is more important and needs writing, like, now, before I forget why it’s a deal.

‘Disabled’ has been a big and interesting word for me for a while, but things really crystallised out because of a conversation I had a little while back with a new but already very good friend. She’s epileptic, and I feel this unfortunate necessity to point out, having mentioned it here, that how it affects her is her business, but that wasn’t in the least what we were talking about anyway. We were talking about the fact that she doesn’t like or identify with the word disabled for herself, but that in a conversation with someone about a disabled person’s railcard, in which the basic idea was “it’s a relatively small word to use for cheap rail travel so it’s a fair shout here”, they turned round to her and said “oh, but you are disabled”. Naturally outraged, my friend and I both promptly agreed that it’s terrible when you only work out the best responses to these things waaaay after the event. Twenty-twenty hindsight, my friends. Sometimes genuinely heartbreaking, mostly just really annoying when you realise the sheer level of scathing wit that you could release upon the world if only it could work retroactively.

When I was (very) small, ‘disabled’ meant ‘in a wheelchair’. Not totally untrue in some ways, I suppose, but equally, the sort of thing that once your age is above low single figures, you don’t have much excuse not to go with something slightly more subtle. My (not so) wee brother never had the D word applied to him too much, though the terribly patronising attitude from some around him of “oh he’s done so well to get through, y’know, despite everything” did it in more syllables. It wasn’t a word he wanted to use for himself, except in a few amazing circumstances that made me feel guilty for underestimating anything about him ever. Like the time he asked a cold caller for their CRB reference number and details of their safeguarding training because he was talking on behalf of a disabled adult, and got hung up on fairly swiftly. As he got older, the idea of disability, disabled students’ allowance, and all the various adjustments that can be made for people became more pervasive, and he considered the toss-up of the word versus the benefits a worthy one to make, though he was getting a bit more than just a railcard!

For me, the first idea that the word ‘disabled’ might ever belong in my life was a long time before my autism diagnosis. When my mental health difficulties meant that adjustments at University were a good idea, I got lumped in with the Disability Advisory Service. They are a marvellous bunch of people in Oxford, according to my experience, and are an excellent foil to some of the recent horror stories of disabled and mentally ill students being shafted by the system. It was a strange idea to me that anxiety and depression were something that belonged in the same building as the students who needed accommodation considerations for their wheelchairs, or whatever it might be. I understand that ‘disabled’ is a fairly easy catch-all term that sort of covers what needs covering and gets people through the door so the nuances can happen later, which I’ve often found they do. But it made me think about what my mental health looks like and what it means in a totally different way to how I had before. It had always been something to deal with, treat, sometimes explain, and ultimately accept. I was lucky for a long time in that it didn’t cause a problem (until it did, which is a blog post I keep promising but need to psych myself up to write, because it’s worth doing properly) beyond sometimes knocking me out for a few days. But a disability? Was it really not so different that they could have found some other term to apply to the same process and department that didn’t make me feel this way?

I know my view is something of an over-simplified one, here, and I know that the point of going to the DAS isn’t that being mentally ill somehow makes me disabled. I’m simply saying that the appearance of the word was a huge deal when it came sneaking in via the workings of my brain, about which, I’d to point out, I’d known for a long time before this. It’s a sticky word, disabled. Even worse, while my mental health is not a disability, it is difficult to shake, once you’ve seen it, the way you end up seeing the issues it presents. How is it not debilitating to simply not physically be able to get up when you know that there’s nothing wrong with your legs? Or to be unable to breathe properly for no readily apparent reason when you know your lungs could work if you just had the willpower?

I don’t choose to use the D word for my mental health. At least, I try not to, because I know if I start concentrating on it in that way, I’ll get stuck in a rut, and that’s no fun. However, being diagnosed with an actual neurological condition, high-functioning autism, has really shifted the goalposts, in that I now know there is a huge aspect of the way I am built that is incompatible with lots of the ways the world works. I can’t take a pill to sort this out, and talking therapy, while useful and a thing I’m in the process of sorting out, can only ever deal with the effects of what life is like, rather than fixing the cause, though don’t get me wrong, I certainly don’t want to be ‘cured’ of autism.

One of the hardest thing is that the diagnosis made me rewrite my rules of engagement with the world, and that lots of the things I had attributed to a bad day, or something that would go away when the depression and anxiety cooled off a bit, were actually fundamental to my brain and would never, ever go away. It’s a subtle difference – mental health difficulties rarely go away completely and forever, of course, but they can be treated and made manageable, fitted into their box so they don’t get in the way. My brain is built how it is built, though, and just as I can’t stop my pupils from contracting in the sun, or my hand snapping back from a hot cooker, I can’t stop myself getting sensorily overloaded in public. I can deal with the effects, get somewhere quieter, walk faster to get out, even run, but I can’t stop it happening. In some ways, it is disabling – there are things I can’t do, things I will probably never be able to do, and the inconvenient thing is that while this was always true, lots of the things I feel cut off from are all because of the same reason, which makes it feel like a bigger deal.

I’m not entirely sure what the point I’m trying to make here is, to be honest (though it’s refreshing not to be an academia anymore, where that sort of thing is almost literally a hanging offence). I think it’s that the word disabled has a lot of catching up to do, which is hardly an original point to be making, and that identifying or not with it is a very personal thing (again, no points for originality). My brother’s autism and mine are the same damned condition (in theory) and we feel vastly differently about it, but to look at us, I’d say we display it in different ways and to different extents because of the way it’s worked out for us. I don’t look ‘disabled’, and I’m often told I don’t look ‘autistic’ and never mind what the hell either of those two things even mean. I think what I’m trying to say is that life shouldn’t be about ‘passing off’ as normal as possible. Words should be used or adopted where appropriate and where wanted. Am I disabled? I don’t know. For the moment, I’m going with yes, because I haven’t entirely worked out how to be in the world as the person I know I am, but I’m hoping that once I am enabled in the world, and once I can work out how the hell to negotiate the fact that the planet I’m on is designed for brains different to mine, I suspect I won’t feel as stuffed as I do now.

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