In the latest of our series of articles from young people talking about growing up with a disability, Jo tells us her experiences:
“I was asked to write an article for Cerebra about what it’s like for me as a young disabled person. This, as I’m sure many of you are aware is a massive topic, and not one that can be covered in one fell swoop. The experience of disability is different for everybody, regardless of whether they are disabled or not. And within every personal journey there is so many things to talk about, such as attitudes and relationships, services, obstacles, the list goes on.
So, on this basis, and considering I haven’t written an article for Cerebra before, I thought I’d simply introduce myself to you all and try to give you an insight as to what it’s like being me. Granted, I don’t think my life is all that interesting, but if you’re anything like me you love to hear other people’s stories…So here’s hoping this is up your street.
I guess the mantra for my life arose when I was little. I impulsively announced to my Physiotherapist that I was going to be a ballerina when I grew up. When I tell you that I have Quadriplegic Cerebral Palsy and I’m a fulltime wheelchair user, I’m sure you can picture the look on the Physios face as she attempted to come up with a response that would neither put me down nor get my hopes up. After a few seconds, she tactfully suggested that perhaps I could be a choreographer instead.
It’s safe to say I didn’t become a ballerina, or a choreographer for that matter. Not because I felt as though my CP prevented me, but because with or without a wheelchair I have two left feet and very little artistic flare. The point is, from an early age I was never told I categorically couldn’t do something. If I had grown to be passionate about ballet, then there would have been a way for me to have been involved. At the same time, no one in their right mind would’ve led me to believe I could’ve become the next Darcy Bussell. I’ve always known my potential as well as my limitations. I’ve embraced them and worked with them.
With this notion firmly rooted in my mind, when I reached school age the prospect of being the only kid who used wheels as opposed to legs didn’t faze me. Sure, my fellow five year olds stared at me as they were asked to push me round the playground and thus were effectively told to ‘be nice to the disabled girl’, but I knew that I had much more to offer than a chair that they could take turns to push. My mission, even at this young age was to make them see beyond the chair.
I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.
I’d love to tell you that I had a grand plan as to exactly how I was going to accomplish this, but I really didn’t. In fact, the icebreaker was entirely accidental and somewhat physically painful. A boy in the year below me unintentionally tipped the chair, and by association, me, into a patch of nettles. As I lay there laughing at my misfortune, I caught a glimpse of the poor boy’s face and realised that whilst I had found the situation hilarious, he had burst into uncontrollable tears at the thought that he had hurt another pupil. I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.
Are you bored of me rambling yet? Oh good…I’ll carry on then.
One of the things that perplexes me most, is the assumption that disabled people are an inspiration. A case in point for this baffling concept came from an English assignment I was given which had to be based upon my first year of secondary school. I can’t remember what I specifically wrote, but I have a recollection of the poem detailing the countless risk assessments that had to be done for my needs to be met, as well as stating that I was always late for lessons because the routes that didn’t involve stairs took longer. I gave my work in with the passing thought that it was honest and humorous and didn’t think any more about it.
However, when my teacher handed the poem back to me she said that it was beautiful and that it had made her cry. In my mind, I thought her reaction was an over exaggeration as I had only done what she had instructed me to do. I remember thinking that perhaps this was simply within her character as she seemed to be the type of emotional person who would get through a box of tissues whilst watching The Notebook.
I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo).
At the point when I received two awards in one day for this ‘inspirational’ poem, things got weird. I was informed by the Headteacher that I offered an outstanding contribution to the community. To this day I don’t understand what the hype was about. I’m not saying I wasn’t grateful for the recognition and I wholeheartedly believe that many people disabled or able are inspirations. This said, it’s not like I had just climbed to the summit of Mount Kilimanjaro. If I had, I could understand what all the fuss was about, considering I can barely walk two steps before the air seamlessly runs out of oxygen. Instead, I was given praise for just being me, which I find totally bizarre. Shouldn’t everyone be acknowledged for being themselves?
So, there you go folks. Just a small snippet of my experiences as a young disabled person and some of the things I’ve discovered along the way. I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo). I’m a young woman, living on my own and I’ve just graduated from University. I hang out with my friends and adore animals. My disability does not make me abnormal or extraordinary. Everybody has challenges in life and my life is no different. The only difference is that many of my challenges include breaking down disability related barriers and mowing down all the obstacles in my path. But that’s a story for another day. If you’ll have me back of course!”
We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The articles will be published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on firstname.lastname@example.org.