Changing the world …

It’s an intriguing and at times nerve-wracking business being involved in a journalistic event such as the guardian’s disability diaries and the accompanying interview by Frances Ryan. One of the reasons for this is the fear of the comments section. It’s some irony that my contribution revolved around the articulation of how it feels to be fundamentally invisible in disability terms, and several comments seemed to have completely ignored both my presence and that of Craig:

‘Why are all disabled people in a wheel chair in this article.’

‘It would be great if the Guardian could also pick up on the difficulties people with “invisible” illness/disabilities face, which is no less devastating.’

Those of us with invisible disabilities appear to be invisible even in an article that specifically discusses us … but amid the nonsense and general furore there is one truth that endures. No matter what our individual disabilities may be, we are all just people. We’re imperfect, messy, inappropriate, rude, inconsiderate and all the rest of it. There is no you and us. And this is a problem, apparently. Disabled people tend, as Anne Wafula Strike noted along with us all, to hear the words ‘brave’ and ‘inspiring’ on an all-too regular basis. I just wish to expand on her thoughts.

The apotheosis of disability is wildly counter-productive, leading inexorably to comments of the ‘I know you’ve got x but,’ variety. You know what, if we’re being assholes, it’s not because of our ‘problems’. We’re just being assholes. It’s ok. We’re allowed. After all, you lot are all the fucking time. (just kidding. You’re all simply lovely).

You’re so brave …

Actually, no. We’re not. Bravery is jumping into the river to save kittens. It’s going into a burning house to save the inhabitants. It’s standing up against tyranny when tyranny has a big stick. Bravery is knowingly endangering yourself in order to help others. Playing cricket when you’ve got Parkinson’s isn’t brave. Stupid, perhaps. When the ball is moving faster than you can cope with it may be considered foolhardy. All I risk is losing face. Ok, so it does hurt when the ball clatters onto your unprotected nose (I know this to be true), but that’s an entirely different thing. As I often retort when I hear the ‘b’-word, the only brave people on the field are those who pick me to play. Oh, unless you’re playing at Tidworth, the home ground of the Help for Heroes cricket team. Those men and women, injured in action, they are brave. At least, they were at the time of their injury. Once they’re in rehab they’re just focused, determined and deserving of our respect.

So. Less of the b-word.

You’re such an inspiration …

Am I? To whom? Now this will sound really mealy-mouthed but what does this actually mean? I understand if you find an individual inspiring, because we’ve all been inspired. But am I inspirational because I have Parkinson’s? I doubt it. I’m happy to tell people that they’re inspirational if they’ve inspired me, and possibly if I’m pretty sure they’ve inspired others, but I do so because of something they’ve done, not because of something they are. I’m not saying that overcoming a disability cannot be inspirational. Sarah Taylor was an inspirational wicket keeper before she suffered from debilitating anxiety, and to come back onto the international stage as she has done is worthy of praise and wonder. I’d happily call her inspirational still. But you know what, I’m just a bloody-minded git with moderate ability who will play as long as people let him.

Brave. Inspirational. We may well be both, but our various disabilities don’t make it so. It’s a peculiar trope that disabled people are rarely portrayed unless they’re paralympians, they’ve saved the whales or raised gazillions for charity. The thing is, disabled people are people first. They just have specific difficulties when it comes to engaging with the world. We don’t want beatification, just respect and consideration. It’s really not too much to ask, is it?

3 thoughts on “Changing the world …

  1. Oh yes- the double whammy of the B-word and the I-word. When people use those words in my direction what I actually hear is, “Thank holy fuck I’m not you”.

  2. Ah yes “you’re amazing”, I get that all the time. For what? For getting up in the morning taking a bucket load of meds, and getting on with my day and my life? TBH I’d rather they said “you’re a grumpy old git” then went and fetched my shopping for me, than thinking I’m some kind of superwoman. I hate what my condition does to me and my every-day. Sometimes I collapse and cry with frustration and exhaustion and fear. Sometimes I just don’t go out for days or weeks because it’s too hard. Where are you then with your accolades ? Like you say, disabled people are only acceptable when we fit into the poor victim or the superhero tropes. And for that I reserve the right to be grumpy.

Leave a Reply

Your email address will not be published. Required fields are marked *