I haven’t talked about having a disability before on this blog. I occasionally rant about it on Twitter, and I write wonky-type articles about disability funding policy. I’ve done a bit of telly talking about it, and, as my disability is public, I encounter people’s reactions to how I look every time I go out into the world.
This space has been a welcome refuge for the last year, where I can just be words on a screen, wondering about politics and where progressive policies will come from. So I have deliberately not talked about having a disability, and what that means. Here, I’ve been free of the side-swipe of progressive folks seriously not getting issues about disability – but only because I’ve not talked about having a disability, not because the issue has disappeared.
Part of my blogging drought has been about not talking about it here. Having a disability informs my life, and my policy interests in fairness and equality. It’s the reason I got involved in politics, and the reason I left. My dear friend challenged me to write more openly online before he died. And perhaps I shouldn’t. But I’m angry, and I’m sick of being nice about being a cripple in public.
My silence here is no longer a refuge. It is silencing my urgent need to tell the world to fuck off.
Today I lost my temper, after being given yet another piece of unsolicited advice. It’s far from the first time, and I’m rarely polite about it anymore. Strangers on the train tell me to rub myself with my own urine, or to use the cream that their grandmother uses on her dog.
Workmates have had to be repeatedly reminded that I can’t take the stairs, or that the cafe is too far. And no, a fucking shoulder rub is not going to help. Random relatives send clippings about obscure treatments for utterly unrelated illnesses. Far too many people say that I’m too young to have arthritis.
After the telly stuff, and the repeats, I got letters. Lots and lots of letters. All I needed to do was get my tonsils out, or go to Turkey and let little fish nibble on me. I needed to meditate; move somewhere warmer/cooler; eat magic food x, y or z; shove some vitamin up my arse. I had random people on the train burst into tears when they saw me – “But you were all better on the telly? What happened?”
I was trained to be polite. To not upset people. To make things nice, calm. I’ve since trained myself to tell all these people to fuck off. To not make them comfortable. To be angry.
I get that people who give this unwanted, and unlooked for, advice think they are being kind. Think they are helping. You are not. And you are person #234509285726 who has thought they were helping.
The torrents of so-called advice are really about you being afraid. Afraid of how I look. Afraid of being powerless. Afraid of someone who looks different. Afraid of pain. Afraid of being sick. That advice is just you wanting to be reassured that there is always something that can be done. Always some magic pill or potion that can fix it. That if you got sick, you would get better.
Things don’t always work out that way. People get sick. Sometimes they don’t get better. Sometimes there is no treatment.
And that fear is yours – not mine. That well-meaning advice invalidates two decades of treatment. Two decades of hopes raised and dashed. Two decades of frightened folks foisting their fear on me. I have plenty of my own fear, thanks. I don’t need yours.
So fuck off.