You Can Hate Me But You Won't Break Me

First of all, I am only sharing this story because I think it needs to be shared.  I don't want you to feel sorry for me and I don't want to blow it out of proportion.

As I was coming along the main road (on the path, obviously) this afternoon in my powerchair a guy in a van leaned out of his fully open window, looked right at me and yelled something at me.  The only word I heard clearly was "chair" But I think it was "walk not wheelchair."

Not very nice.  At all.  And yet I'm luckier than Incurable Hippie who had a much more scary experience last night.

He wasn't trying to tell me something was wrong with my chair, I checked and it was fine. Plus, I've had people driving past me do that before and they've always stopped to be sure I heard them.  "oh you're bag's fallen off the back" that sort of thing

I'm bothered about shouting at about that but I didn't want to make a big fuss and having it recorded as a disability hate crime (although, technically, that's what it is.)  However at the beginning of this year I promised myself I wasn't going to be a doormat and was going to stand up for myself as much as possible with all those people who I don't know but who demand to know why I'm in a wheelchair or when I'll be "better" or all those sorts of ridiculous non of their business questions.  And so far this year I've done it twice with limited success. And once when maybe I should have (when someone laughed at me in the doctors waiting room) I wasn't able too as I was too upset.

I was under the impression that the big disability charities had all agreed to monitor this sort of thing.  So I called the Scope helpline.  It is very important to me that this gets included in the statistics about this sort of thing.To be fair to them, thanks to the power of Twitter, I've since had an apology (or "we're sorry the service wasn't what you expected") but I really wasn't very happy with the way the call was handled.  I felt like the person I spoke with was dismissive and her basic response was that a lot of people get shouted at in the street for various reasons like race or disability. It's not right but "it happens".  And there was nothing Scope could do.  The person I spoke to didn't even ask if I was OK.

Someone on twitter has since passed me a link to a site about hate crime and it included Scope as an organisation you could go to for help with this sort of thing (and I've used their anonymous online tool to have the details recorded).  BendyGirl called to check on me and she said she thought the same about the big charities.

I don't want to make a big fuss about this but I wanted to share it because it's something that happens when you're disabled.  So saying "it happens" is fair enough.  But it's not good enough.  Because it shouldn't happen.  No one would expect someone who is gay or Asian or in any other minority to put up with that sort of thing or deal with those sort of questions.  And I don't know why I, as a disabled person, should have to.

I'm used to people not understanding disability but truly the level of hate and the scrounger stereotypes are getting much much worse.

I've had apology from Scope for the lack of help from their response helpline but I remain disappointed that someone working for an organisation whose whole purpose is to support people with CP was so unfeeling.  I considered them one of the big disability charities but obviously I got that wrong.

I'll never get an apology from the man in the van, I don't know who he is and frankly he's just an idiot.  I doubt he'll read this and if he does he probably won't realise it's him I'm talking about.  Chances are, however, that one day he'll have the same experience I did.  Because lives change in an instant and people become disabled in a blink of an eye.  Don't castigate those of us who wheel through life instead of walking or have other forms of disability.  Because chances are one day you'll be one of us as well.

"adverse medical conditions"

Outside the supermarket earlier there was a guy collecting money for a charity providing days out for kids. I forget the name which I'm annoyed about because I had intended to e-mail them about their ableist language on the board they had up.

The conditions of the children they help include, in this order:

Cancer, Leukaemia, Cerebral Palsy, The deaf and blind, terminal illnesses and other adverse medical conditions.

This is their wording, not mine.

So first I was a bit like "cancer, leukaemia, CP??!"

I don't know why but it just struck me as a strange list. Two serious life threatening illnesses, a touch of CP, two other disabilities then oh look better fit something more serious in to finish off, terminal. Could be taken as the disabilities being as bad as the rest. Not that any of the conditions are "bad" per se just in terms of seriousness.

And their wording really, really sucks. The Deaf and blind? Uh, no thanks.

I really wish that if charities and organisations want to improve lives for PWD or illnesses or other challenges they considered their language and they way the portray people in that. Because days out are nice, and Make a Wish trips can provide wonderful memories and a break from the medical. Wheelchairs and equipment are very useful as well as often life changing.

But phrasing things in a different way also has the potential to shape the world and change lives. Refer to these kids or adults or whatever as "Emma has CP" rather than "CP sufferer Emma" or "People who are deaf and blind" rather than "the deaf and blind."

I totally get that the charities play on pity to raise their money. And maybe they feel that using more inclusive language would prevent them making the difference they do now due to a drop in donations. But changing their language and the spin they put on things has the potential to change the world in another way.

It would help end negative stereotypes, stop reinforcing them in the public's consciousness and it would also do a lot of people in these situations a hell of a lot of good to stop hearing how terrible people consider their lives to be and how they feel sorry for them etc etc. It would never happen but it would be such a great boost of self esteem.

Oh and finally, adverse medical conditions? I never considered CP to be "adverse" before. Hard at times, yeah. But so is life. And CP to me isn't generally a big deal. I didn't really like seeing CP on that list, made me feel strange. Sort of :-S

Obviously I do realise that comes down to the whole never having known any different thing however.