A few days ago it came out that the little girl who went missing in Machynlleth in Wales last week, April Jones has cerebral palsy. It kinda made me stop and pause a moment hearing that she’s got CP just like me more than anything else I’d heard about the case. The news coverage all seemed to use the term suffer “Missing Girl April Suffers from CP” screamed the headlines.
I posted to a facebook group for CPers that I belong too that I wasn’t sure whether to be impressed that she’d gone missing Monday night and it had taken until Wednesday night before mention of her disability was made in the press. Or annoyed by the use of the term suffer.
Impressed because of the added shock value CP would bring wasn’t used immediately. And annoyed about the term suffer because it’s so negative and not appropriate.
Now the group I belong too is really cool and has some really opinionated kick ass people offering support and friendship. I love it. I don’t think I’ve felt like I belong in an online disability group like I do here. I also posted a similar comment about the term suffer on twitter.
And in both places there was a bit of a discussion on it. Some people felt like the term suffer wasn’t what mattered here, finding April is. The group of CPers seemed to focus much more on the CP side and I felt like the tweeters had much more of an issue with my having an issue with Suffer. And I agree that locating April is the most important thing. Sadly however the search is now a murder enquiry and it looks like she won’t come home.
But I don’t want people to pity me. I want people to know that CP isn’t a disease. It’s a disability, a life long condition that I live with. And I don’t suffer from it. I have it. It’s a really important distinction. One that takes away from the automatic pity “this is something negative” response and shows that it’s OK to live and accept and simply be disabled and content.
Of course for the majority of the people reading that story about a missing five year old who suffers from cerebral palsy it’s just another fact in an already very tragic news story. And those of us who have CP or other disabilities might see it differently whilst still seeing the tragedy of April’s case. That doesn’t mean I’m wrong to speak out about something seemingly trivial like language though.
I take my time before I speak out and sometimes I pick my moments, decide that now is not the time or this person will never understand or something similar. The trouble is there is always a reason not to say “I’d prefer you not to use this term to describe disability because XYZ” and if I always went with that reason people would never know what I think. I’d never manage to reach out and change anyones opinion.
I’ll always speak out whenever I feel I should and that I can. That might mean that sometimes I say things that others don’t understand or that makes them uncomfortable. And occasionally I might come to regret it and realise that then wasn’t the time.
But at the same time it might be the thing that helps someone feel better about themselves as a disabled person. That makes me feel less like a worrthless freak hated by society (I’ve had days when that’s how I’ve felt) Or it might change attitudes.
I like my disability, I’m proud of it and I love my life. I have friends and family who support me and I have brilliant opportunities, pretty much everything I need or want is in my reach if I want to go out and get it and I’m generally in a good place and enjoying life.
I want that for other people with disabilities too. I want disability to be seen as a good thing. And OK so others think my brief comment is inappropriate. I can’t do anything to help April. But I can speak out and help make sure that other little girls and boys with CP grow up to be accepted and not face negative stereotypes.
That’s so important I can’t describe it. And if I can do something about it, I always will.