I never really wanted to be much of a disability ‘activist’, or even associate with things concerning disability or disabled people. I didn’t see myself as part of that kind of group even though I was fully aware of the stereotype that I was, and what I couldn’t not, be a part of. I didn’t want to be that kind of person who only ever talks about being disabled, who you see barging their way through to the front of a queue in a pub “because I’m disabled”.

Because all disabled people do that, right?

I didn’t want to live alone and survive on microwave ready meals. They all do that as well, don’t they?

Okay, aside from the satire, I just wanted to be a normal kid. A normal girl growing up in a normal Cornish town (oh the jokes!) and have normal friends in my normal school. And I had most of those things. I did mostly the same things other kids did: after school clubs; went to Brownies at the community centre; went to friends’ houses after school and played outside in the sun; loved going to the local theme park. I’d throw myself into the mini roller coaster cars no matter who disapproved. My disability didn’t get in the way of my childhood social life too much. I wasn’t particularly ‘popular’, in the typical modern day sense of the word but I had a few close friends. And I have those friends (I’m sure they know who they are) and my family to thank for all of that.

It only lasted so long though. Then it started to get in the way. My confidence was poked and prodded each time I was poked and prodded by physios and doctors, and I know now that they were just doing their jobs but at the time it just made things become a lot more obvious that I wasn’t normal at all.

I went on Guide Camp and the only memories I have of those few days away were trying to walk across muddy grass to get to a cold and wet outdoor toilet, and not being able to put my shiny new wellies on by myself because of my splints. I don’t even remember the activities we all did. Not a clue. All that I retained was the struggling. The panicking as I looked at the wooden steps up to where we all ate. Worrying that everyone would stare at me as I awkwardly stumbled my way up. Why didn’t the group leaders know that I’d struggle with that? Maybe they were doing me a favour by making me learn a few home (campsite) truths that would prepare me a bit more for what was to come.

This is why I want to write this article, as a bit of therapy for myself but also for others. Other people have to learn how people are seeing themselves in comparison, a large majority of the time, to everyone else. I don’t mean that kids in school need more opportunities to learn about equality from a slideshow or from a fuzzy video about a disabled child that the school has been showing to every year group since 1987. That isn’t what learning about disability should be about. It’s got to be opportunities to learn first-hand about the real stuff, about their peers that they see-or don’t see-every day. The things that nobody ever would consider to be useful information to anyone. That is what will change attitudes.

That memory of a tiny moment in time when a 12 year old is told they don’t ‘need’ to do Physical Education with the rest of the class, will change things for the rest of their life. Not everyone will want to fight that decision or suggestion and so there begins a string of events where “because I’m disabled” becomes the reason or the answer. If you tell a child they don’t qualify for the same opportunities as their peers, they’ll never seek to be anything but less than equal. Who gets to decide what another person should or should not learn or be involved in?

Ask your kids (if and when you have them!) to ask their teachers, “where are all the disabled kids in the school, why aren’t they playing basketball together with us? Why haven’t they come on this geography field trip with us?”

Isn’t the best way to teach everyone about what might be different or difficult for others, for us all to learn together by asking questions? Honest questions. It has to start with young children wondering quite innocently, how I get into bed? Do I sleep in my wheelchair? How do I get in the bath? If children get answers to these questions as early as possible, they won’t need to sound like a creepy adult, standing behind you in a queue in the supermarket asking “so how do you get on the toilet then?”

They won’t need to tell me how courageous I am and how well I’m doing for keeping my own children alive for 4 consecutive years. Unless they tell every mum that, then by all means, go ahead. Go me!

I’m writing this article not for the children themselves, but for their respective adults. Their parents, their teachers, their postman, their swimming teacher. Everyone is responsible for raising the next generation of adults as open-minded, curious-but-not-nosey, sensitive-but-not-patronising, and altogether awesome adults.

And follow me on Twitter @shopgirlygm


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