On writing about disability

That’s what scares me the most about talking about disability. It’s being reduced to someone who is so broken that they are capable of nothing. And that’s exactly why I mean to talk about it. Because, like the other stories I write, talking about disability is a way to reclaim that agency. To demand and demonstrate that my disability does not mean that I am reduced to damage.

mouthyb, in her guest post Learning to Write About Disability

In that grand blogular tradition of riffing off another blog post, I’m going to jump off from mouthyb’s post and dive into my own thoughts on writing about disability. I want to talk about some of the difficulties I have had in writing about my experiences of being disabled, specifically in starting off at FWD/Forward.

At the start of October, I was getting to a stage where I was getting tired from disability writing. Not tired of it, per se – there is always so much to say! – but tired from writing so much, exploring these thoughts, exposing what was in my head for the first time in my life. It was a lot like building up a muscle, I guess; the work’s hard and it’s hardest as you start off. There was a lot of chopping away at fears and examining internal constructions, some of which I’d set up to save myself from the world, and some of which the world had set up in me anyway. It was big and scary and a lot to cope with. I was going to take a break, maybe get back into exploring some other areas of oppressions and identity.

Then, of course, during a round of emailing one day amandaw threw out the idea for FWD/Forward, and I simply had to accept; I could not refuse to be a part of what would surely turn out to be a magnificent project, especially with all these great writers on board. So thought I’d go slowly, slowly, maybe use a few things I’d written previously, hope I’d get my mojo back, I could write through this. And I am so glad I did sign on.

I’m not sure how great an idea it is to write through a period in which one needs a break as a general rule. Writing, writing from within yourself, is hard and exhausting work, for me at any rate. It’s one of the toughest things I do with regularity, and also one of my favourite things in my life. In this instance at least, working that muscle has proved to be a positive exercise (heh). I found greater capacity to write in doing so (by pushing myself, because of the obligation I felt to contribute as much as I could to administering this site, maybe it was just what would have been there anyway). And I don’t know that that’s because I gained lots of passionate inspiration. I think it’s more because I must write. There’s the knowledge that as a disabled woman, I’m going to have to think about this stuff, and as a writer, I am compelled to express it, so I am doing what I must do. I can’t actually stop being a writer, and I can’t stop identifying, so I must work.

But of course, some things are painful to write about. There are some things I know I won’t write about in the foreseeable future. And with regard to pain of the physical kind, it was difficult to write through the great fatigue, brainfog and hurting hands I experienced for much of 2009 (hoping the worst ended with the year!!). So I try to negotiate as best I can what my body and brain need (rest, stillness) with what my mind and soul need (to explore, release).

But the worst of my learning to write about disability took place much earlier, when I spoke about it for the very first time early last year. Because there is a great deal of shame associated with disability. Society holds it something to be hidden away, denied. When it’s to be spoken about, the speaking must come from parents, carers and advocates, not the people concerned themselves. I had internalised a great deal of that shame.

I’m writing because I have things to say about disability, ableism, and my personal experiences. To me, it’s important to contradict those who tell us, ‘you can’t have experienced it like that. You’re lying, you’re mistaken, it’s not possible, that’s not how it goes.’ It’s important to ourselves mark out the issues that matter to us, lest others do it badly or not at all. It’s particularly important that we ourselves, who are so often denied our voices, so often silenced, tell these stories. So I am telling mine and doing my bit to support the voices of those like me.