Hello 2018!

First blog post of 2018! I hope you all had a lovely Christmas and New Year. So, another year for CP Teens UK. This time last year I had just had 'that phone call from Theresa May' - unfortunately there hasn't been anything this year so far that has been quite as exciting, but 2018 promises a lot for CP Teens UK and for everyone involved!

I could give a few spoilers away, but I'm not going to! Make sure you keep checking the CP Teens UK Facebook and Twitter page to get all the latest news.

Yesterday, the first CP Teens UK event of 2018 was supposed to take place, which was 'CP Teens Goes Bouncing'! Unfortunately, lots of you already had things on so the event had to be cancelled. However! Myself and Chloe still ventured to a trampoline park for the day. We would like to say that we were testing it out for the future rearranged event, but in reality we were just being big kids! It took me by surprise how difficult I actually found it, but it was hilarious! But, it is possibly even more hilarious that Chloe appears to be much more balanced running through a trampoline park than on solid ground! As for me, balance totally and utterly went out the window - I think I left my balance in the car!

The 'CP Teens Goes Bouncing' event will be rearranged for spring/summer.

So, I was thinking about what I could blog about for the first post of 2018. I was thinking after a conversation with someone, there are a couple of sayings that I have heard time and time again in the context of having a disability. I suppose they could be described as ‘ableist’ sayings. But, when does the line get drawn between grit and determination and being realistic? There is most definitely no right or wrong answer and everyone is entitled to their own opinion.

I often read blogs and articles that tell me things such as not to be ‘defined by my disability’. Part of me totally understands messages like this, but part of me often feels why are we being put under such pressure? Surely there is a fine line between being ‘ableist’/not being defeated by our problems, and being true and honest to ourselves and to who we are?

Here are the two sayings around disability that I personally don’t like. I think they put people under pressure to be certain people, to do certain things and to achieve certain things!...

1. ‘Don’t be defined by your disability’

I get what this saying is trying to get at. I will be the first person to say that I am my own person, Cerebral Palsy or no Cerebral Palsy. But, although I’m my own person, I’d be lying if I said that Cerebral Palsy hasn’t defined me to a point. Just like I would be lying if I said I hadn’t been defined by the way my parents brought me up, or where I went to school, or even by the town where I grew up in. Our life experiences define us and I’ve experienced a lot, from the awful to the amazing, as a direct result of having Cerebral Palsy. I’ve gone down a very different path to the path I would have gone on if I was able-bodied, so personally for me it’s silly to say that I am not defined by my disability. I am.

I do however mean that in a positive way. This within itself could turn into a novel, but I’ve got 23 years worth of experiences with Cerebral Palsy. The vast majority of them I would have never experienced if I hadn’t had Cerebral Palsy. From screaming the hospital’s hydrotherapy pool down, to representing my country in Athletics, to winning the Prime Minister’s Point Of Light Award, to cutting my head open on the school playground and going backstage at the X Factor (a very random selection of stuff there!) I have done them all because I have Cerebral Palsy. These experiences have all contributed to me as a person.

Aside from experiences, I have had to find a way around many things throughout my life. I have become the queen of adaptations! The constant thinking of ‘how could I do that then?’ has most definitely defined me. It is a huge part of my life.

I much prefer the saying ‘I have Cerebral Palsy, but it doesn’t have me!’ even if it is pretty cheesy! I personally feel that by saying that ‘I’m not defined by my Cerebral Palsy’ is quite negative - it’s almost like you’re trying to ‘dismiss’ it and as a person you have nothing to do with it wherever possible. By saying ‘I have Cerebral Palsy, but it doesn’t have me’ I feel like you’re acknowledging that yes you do have a disability and this means certain things/extra considerations/certain limitations etc., however even though you’ve got all of these extra things going on, you’re still you and you’re going about life, just with Cerebral Palsy which is a part of you.

I definitely feel that the saying ‘don’t be defined by your disability’ puts pressure on you to lead a ‘normal’ life (although what is a ‘normal’ life anyway?!), a life without everything that comes with your disability. But, if you’re true to yourself, you know that this is impossible. Cerebral Palsy is for life, not just for Christmas! Haha!

2. 'My disability doesn't stop me from doing anything'

Again, I totally understand what this saying is trying to say. And don't get me wrong, I am up for anything - I am by no means a negative person who sits at home saying 'no' to everything on the basis that I have a disability. I am that family member who is constantly trying to persuade the rest of the family to do new and adventurous things. So many activities nowadays can be adapted for people with disabilities from skiing to driving a car.

I will give anything and everything a go. But, for me, it would be silly to pretend that my disability doesn't stop me from doing anything. It does. For example, I have poor hand coordination, so I can't say make myself a hot drink or cook myself a meal as it would end up in A&E with third degree burns! I couldn't be on the other side of A&E either and be a nurse as a profession for the exact same reasons - my hands would not allow it! I can't board a train without either taking someone with me or booking assistance. I can't do my own hair... you get the picture. So, yes, it does stop me from doing things.

BUT! It doesn't stop me from finding alternative ways around things! Take skiing for example, I couldn't do ambulant skiing (what a comical thought!), but I can do the adapted disability version where you are seated. I think there is so much pressure to conform with the image of being a 'superhero' if you have a disability by being able to do everything just as you would if you were able-bodied. But to me, you're more of a 'superhero' if you admit that you're unable to do something yet find an alternative way around it. I also am a great believer in the fact that you'll be happier in the long run if you admit that you can't do something. You're only kidding yourself and making things harder for yourself if you don't. The sooner you admit you can't do something, the sooner you can find an alternative way and the sooner you get to the 'destination'.

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© CP Teens UK 2020.

Registered charity - 1172105

 

Website by Ellie Simpson.

CP Teens UK is committed to the safeguarding of children & vulnerable adults.

DISCLAIMER: This organisation & website is run by people with Cerebral Palsy, for people with Cerebral Palsy (and other disabilities). No medical experts or professionals on Cerebral Palsy, or any other disability, were involved in the making of this website.

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