I have cerebral palsy … the athetoid (wobbly) sort. Basically what happens is when I tell my body to do things, the messages don’t get there accurately and can make other parts of my body move too. It feels as if someone like Mr. Bean gets in on the act somewhere in between me sending out instructions and my muscles receiving them. When children ask me what’s wrong, I explain I have naughty muscles that don’t do as they are told and make me wobble! My body is fairly strong and fit in and of itself and I don’t take that for granted.
I have very little control of left side and a speech difficulty which varies from being a very big problem to hardly anything depending on tiredness, environment and how well I know the listener, or how in tune we are.
Having been brought up to just get on with life and not make it into a big deal, I have adopted my parents philosophy of “Where there’s a problem, there must be a solution.” and I enjoy finding creative ways of overcoming.
One of my earliest childhood memories is being sat in the lounge with Dad’s hardback encyclopedia volumes piled up around me and being encouraged to use them to myself get up. I guess my parents knew I’d always be more at risk of falling over and so it was important to learn how to get up again. If they’d “wrapped me up like a china doll in cotton wool” I would not have got anywhere in life, I’m grateful they did all they could. As for my sister – I think I blended into her sense of what’s normal and she made sure I never got away with anything! Our fights in the back of the car and our playing together probably did as much good as any physiotherapy!
You’ll notice in the sub-heading “My Disability” I put a couple of question marks after ‘My’. This is because I’m conscious that my disability doesn’t affect just me, it affects everyone I come into contact with and thus it becomes a shared challenge we have to ‘hack’ together.
So, you have landed on my very own corner in cyberspace, where I invite you to join in being a Disability Hacker. Here is where I share my tricks and gadgets to hack my cerebral palsy!
We are all unique (Labels are for jars NOT people!) and I certainly do not claim that what works for me will work for everyone with a disability. I do however, hope, that it will help get you thinking outside the box a bit. I must add a disclaimer, I do not have all the answers to my own problems, so I hope you will share your insights too by joining in the discussions and commenting.