Tuesday, 6 April 2010

Place without a Postcard

Today, whilst procrastinating, I am watching the Jeremy Kyle show, which for a change is not a shoutfest of dysfunctional families throwing accusations at one another. Its about living with disability. And it inspired me to write this.

I haven't really mentioned my husband much in my blog, but he's (please don't tell him we need to get his head out the door on moving day) amazing. He was born with a complex disability, arthrogryposis multiplex congenita.

It basically means hooked joints, affecting multiple limbs, and its from birth, but thankfully most cases are not genetic. Corey has fused joints, his ankles and wrists are worst affected, but his knees are affected too. There isn't much he can't do, because he was brought up to just get on with it.

Having a child with a disability is like being put in a town that isn't on the map, a place without a postcard. The books you might buy in pregnancy or shortly after bringing your baby home are useless. People don't know what to say. Doctors don't know what to do, particularly if its a rare disability that affects each child very differently.

I also chose Place with a Postcard for another reason. It was the title of a Midnight Oil album released in 1981 (and contains the song "I don't want to be the one") which was the International Year of the Disabled Person. I was nine, and just beginning to become more aware of the world, and the people in it.

I had to attend an assessment centre (well it was a special school really) every week when I was 7, and I met loads of children with a variety of disabilities. Later my school used to host children with disabilities once a year. I was always amazed by these kids, despite one of my teachers (quite unbelievably) telling us these kids were very different from us, and would steal our toys, I always found them incredibly normal, and fun loving. They taught me how to play in different ways, to do things just that little bit differently.

I had a little friend, a few years younger than me, who had down's syndrome. I never realised it was a disabilty, I thought she was just amazing and funny, and clever! Her older sister was my sister's age, and this little girl, Melissa, was younger again. I played with her, so my sister could play with her sister.

Some years later I was in a youth orchestra and we played at Melissa's special school. She ran straight up to me and sat on my knee. One of the pieces I put my violin down, and played the triangle, I let Melissa do it, much to the horror of Jane Himmelhoch-Mutton our conductor (fab name!). But I knew Melissa could keep perfect time!

To me disability is just difference, its not necessarily bad, it's society that makes disability difficult. It still makes me angry sometimes when people assume Corey is drunk because he can't walk properly (we almost got refused entry into a club because they thought he was drunk!)

It made me angry when I was pregnant when people asked me if I would terminate if our baby had Corey's condition.

And it makes me angry when people automatically assume Joseph will be disabled because he was premature.

Not that I would be bothered, he would still be Joseph.

But it makes me wonder, have we really moved much beyond 1981.

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