The reason I’ve been absent from here for, like, weeks at a time is that I’m writing an essay on impairment, disability and the body. (Why yes, I did decide to jump straight into one of the most controversial issues in the whole of Disability Studies and see if I can swim. Not sure what the verdict is yet. If I drown, I’m sure you’ll hear about it.)
It turns out I’m more committed to the social model of disability than I realised I was.* I knew I was a fan – what else has changed lives, motivated mobilization against oppression, and brought people together as much as the social model has? But, being a person with a chronic illess (actually several chronic illnesses, including a mental health problem) as well as a disabled person, I’ve also long been aware of the shortcomings – not of the social model itself, but of what’s been left out in its adoption by the disabled community. It doesn’t talk about what Carol Thomas calls ‘impairment effects’ (which are different for everyone, but might include pain and fatigue). That irritates some people, including feminist critics (who think the social model is influenced by patriarchy) and postmodernist academics (never read Tom Shakespeare, never ever, very silly man), all of whom think it is incomplete and either needs altering or dumping.
And yet, despite all that, I remain convinced that the social model is still the most powerful tool we have for change.
It’s an awfully odd experience, sitting in a classroom full of people who aren’t even bothering debating the issue, since they’ve all decided that the social model doesn’t need changing because it is the way to change the whole world, in all areas from euthanasia and eugenics to education and health/social care. It’s brilliant, of course. (If a bit disappointing, as I wanted to sound off about Tom Shakespeare. Although instead I got to sound off about student media that publishes disablist crap and gets away with it. More seriously, I did want to talk about Liz Crow’s amazing call for the disabled movement to start considering impairment. But I shall write about it in an essay instead. There’s some incredible writing out there for those who want pain, fatigue, terminal illness and other impairment effects to be taken more seriously in the disability rights movement. I can recommend reading, if anyone’s interested.)
But it’s also got a less empowering edge to it, that ongoing experience I’m having of being surrounded by non-disabled allies (my class is made up of about a 3 non-disabled to 1 disabled student ratio this semester) who have made up their mind about how infallible the social model is. It feels just a bit too much like religious fundamentalism to me. And maybe even more dangerous than that, since it’s not quite ‘nothing about us without us’, however fantastic, well-read, well-meaning and committed to the cause these people are. This became really clear to me last week, in a conversation with one of them (an awesome person, btw) who wasn’t willing to listen to my opinion that life is, arguably, always worth living, even if that life involves quite a lot pain. He didn’t mean anything negative; he thought he was representing people who didn’t have a voice in that argument. But then, that was exactly the problem.
And it was then that I realised exactly why ‘nothing about us, without us’ is an absolute essential. Yes, it might leave non-disabled allies feeling excluded – that’s a risk we’ll have to take. And we need those allies, and should continue to welcome them into the cause. But they can never be allowed to speak for us. That’s at the heart of what the social model stands for. Attitudinal barriers are everywhere – even among the most enlightened of non-disabled people. While it’s extremely important to ‘bring back’ (to quote Liz Crow) our experience of impairment into the wider debates of the disabled community, the social model has to remain at the forefront of everything we do – at least until every single barrier, attitudinal or otherwise, has been purged from our society, and we speak for ourselves.
I should be getting some of this into an essay, but I’ve got a cold. (To quote The Girl this morning: “This is what happens in November. There are viruses, and I have them and then you catch them from me, and then there are wheelchairs…” Heh.) So instead I’m watching Stephen Fry in America, and a bit of Firefly. Best not to stress about the regular necessity of recuperation when you’re a sickly child. Especially when said recuperation can involve tea and Joss Whedon.
*I have just spent ten minutes looking for a good definition of the social model online, in order to illustrate this concept for those of my readers who are not aware of it (all two of them). I could quote an ‘original’ definition, but there are at least two different versions, and I can’t choose between them. All the online definitions I can find are ridiculously wordy, when it’s really a very simple concept. A prize** for anyone who can comment with a good link that explains the social model in less than 100 words. Or who can do that themselves.
**The prize is metaphorical. Sorry.