Ellie Simpson of CP Teens UK Writes for Independent Living

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Hey everyone,

Although it’s ever so generic, I’ll start off by introducing myself. My name is Ellie Simpson, I am 19-years-old, I live in the North of the UK, and I happen to have Quadriplegic Athetoid Cerebral Palsy (such a mouthful, I know!). Some of you will know what this ‘fancy’ title means, but for those of you who don’t, basically it just means, all my limbs are affected by Cerebral Palsy and my movements are jerky and I often get unwanted/uncontrolled movements. However, I can walk (surprisingly well for somebody with my type of CP apparently!), and I can talk; a common misconception of somebody with Athetoid CP is that they are unable to do either.

Believe it or not, although most people immediately think of walking to be the main issue for people with Cerebral Palsy, in my case, it is my arms and my hand function that is the main ‘issue’. Okay, walking isn’t the easiest of things – I tire easily, and I do use a wheelchair when I go out and about/for long distances, but my hands are pretty useless! I can’t do things such as pour or hold drinks, prepare or cut up food, style my own hair, do up buttons or shoelaces. However, life isn’t measured in ‘can’ts’, it is measured in ‘cans’, and there are lots of things I can actually do! You can do most things if you put your mind to it; I can text rather efficiently on my iPhone, but I’ve not got enough hand control to wash up … how convenient! See what I mean by you can do anything if you put your mind to it?!

Last May, I left school after my A Levels and I literally did not know what I wanted to do, nor did I actually have anything to do. I really wanted a small job just to fill my time, but although we are now meant to live in a society of ‘equal opportunities’, I just had no hope because of my disability. My so-called ‘friends’ from school had disappeared off the face of the earth and I felt both hopeless and helpless. I had a Twitter account and I wondered if there was anyone else ‘like me’ out there. I can’t even remember now how I went about finding other people on Twitter, it’s all a bit of a blur! But, to my amazement and delight, there were others of a similar age to me on Twitter in similar situations! This was when I decided to create…

CP Teens UK

My aim was to create an online community for teenagers and young people with Cerebral Palsy to connect and somewhere that they could sort of say, ‘it’s not just me!’; I can remember that when I was a younger teenager, I honestly thought that ‘it was just me’, and almost like I was the only person on the planet with Cerebral Palsy. I started off with the CP Teens UK Twitter page to kind of sound out my idea. However, it was clear that my idea was a hit the next morning when I woke up to 110 followers, including Sophie Christiansen (Paralympic Dressage Champion) and Francesca Martinez (CP Comedian)!

I could be here all day explaining how CP Teens UK took off! So, to cut a long story short, I designed and launched the CP Teens UK website (kindly provided by Jared Freeman, one of the teenagers with Cerebral Palsy I originally found through Twitter) in October 2013, and I also launched the CP Teens UK Facebook page. The local press and Sheffield Children’s Hospital discovered my new site and wrote articles on me and CP Teens UK, which was a huge boost both on a personal level and for the website. CP Teens UK now has hundreds of visits everyday, and incredibly interactive Facebook and Twitter pages, all ran by myself. I also keep a blog on the website, which welcomes guest bloggers, and I update it on a weekly basis discussing a range of things from my own life, news for CP Teens UK, current issues, things affecting people with Cerebral Palsy/disabilities, discussions from the Facebook and Twitter pages etc.

Without sounding too big headed, I am very proud of CP Teens UK (okay, that does sound big headed!), and it has been amazing to watch it grow. I’ve spoken to so many people through it and I’ve even met up with people; for example, a girl called Laura contacted me through the website and it turned out that she only lives 20-25 minutes away from me, so we now meet up every week and we’re really good friends!

Furthermore, CP Teens UK is no longer just used by teenagers and young people; the audience goes from 8 to 98. I’ve had parents of children with Cerebral Palsy, physios, occupational therapists, special needs teachers, medical students, journalism students, and even Paralympic gold medallists contact me; it’s just crazy!

CP Teens UK gave me hope whilst appearing to help other people, which is a winner in my opinion. However, something else also gave me a great deal of hope after I left school, and this was sport. ‘Sport?!’ I hear you say, and believe it or not, even though I have a physical disability, I can’t thank sport enough. I was totally in awe of the London 2012 Paralympics, which was strange for me as I was always not a massive fan of watching sport. When they put out the flame at the Paralympic Closing Ceremony, I can’t even describe in words how I sat on my sofa just wanting to take up a sport … any sport!

I did try and find stuff in my area online, but I couldn’t find a single thing, so I kind of put my ‘passion’ to ‘bed’. This was until April 2013, when Twitter came up trumps once again! Paralympics GB tweeted about a ‘Sports Fest’ they were holding in Sheffield, where you could go and try out all of the sports. I signed up straight away, but on the day I nearly didn’t go as I was so unsure. However, I’m so glad that I went and that is probably an understatement!

When I got there, I got stuck straight into athletics. Now, when the lady from the athletics stand approached me, I thought, ‘athletics?! She’s got to be having a laugh!’, but to this day I have never looked back. I was introduced to the ‘Club Throw’, which I now train in and I have my first ever British Athletics competition on May 17th. Participating and being so involved with Paralympic athletics has given me something that nothing, or nobody, has ever given me before. It has given me, and continues to give me, so many more opportunities that academic routes never have, and never will, provide me with. I’ve been so inspired and in awe of everybody I’ve met through my sport, and I really don’t know how far I’m going to get competition-wise, but most importantly, sport hasn’t discriminated against me, which is a bizarre thought, as sport is obviously physical and I have a physical disability! In the picture with this blog, I am with Paralympic and World Champion wheelchair racer, Hannah Cockcroft.

Never, ever, be afraid to try something new!

Thank you Frances from Independent Living for asking me to guest blog!

Some websites for you to visit (they will open in a new window):

Parasport – find your sport!