Happy Cerebral Palsy Awareness Month!
As I write this, we're already a whole 2 weeks into March, which I'm sure you're all aware is Cerebral Palsy Awareness Month! I apologise that I haven't blogged since February - as you know, this is quite unlike me. Yet again, I've been juggling my 3 'hats', which swap & change constantly between 'University Student', 'CP Teens UK' and 'Athlete' ... not that I see myself as an 'athlete', pizza always comes first!
In conjunction with Cerebral Palsy Awareness Month, some of you may know I have been tweeting through the CP Teens UK Twitter Page a fact a day about my Cerebral Palsy, so at the end of March, there will be a total of 31 facts. Some of them have really got all of you engaged and tweeting along, including:
Fact 7 - 'I have a startle reflex as a result of my Cerebral Palsy - I literally jump at everything and anything!' ... I had lots of tweets from you identifying with this! I also had some tweets from you who didn't know having a startle reflex/being jumpy was connected to your Cerebral Palsy - you learn something new everyday!
Fact 10 - 'I can become really over tired really easily, which is a tad inconvenient being a uni student, an athlete & founder of CP Teens UK!' ... I had lots of tweets saying 'yes, finally someone else who understands I'm not 'just being lazy'!'. So many people just assume that I'm being a 'typical lazy student' when I say I'm tired - no, quite the opposite, I am geniunely tired & I could quite happily go and put my head down for well over 12 hours! I got so annoyed on Friday morning as we had a seminar at 9am, and to say I felt 'dead' was an understatement - only 6 other students turned up!
Fact 8 - 'I burn holes in my right shoes, and my right shoes only, because of the way I walk! All my left shoes are in 'perfect' condition!' ... Another one that a lot of you totally agreed with - I thought it was just me too!
Keep watching the CP Teens UK Twitter page this month for a new fact each day!
Also for Cerebral Palsy Awareness Month, I/CP Teens UK launched the 'This Is Me, This Is CP' Campaign. This Is Me, This Is CP aims to spread awareness that every individual with CP is just that, an individual! We have our own individual personalities, and our own individual needs as CP is a very diverse condition & how we are each affected is as individual as our fingerprints!
So, I now only have 5 weeks left at University and then that is my first year done, which I can't quite believe! I'd be lying if I said I've loved every minute of it, because I haven't. But, on the whole, I really have enjoyed it and I am glad that I didn't cave in this time last year! I am a much more confident person than I was back in September. I've been on the TV, the Radio, I've been put in with a whole new bunch of people from students to tutors, I've done presentations as part of assessments, I've coached people (which I did in this week just gone!), I've been put in front of 40 primary school children to do a question & answer session about myself & sport, I've participated physically in practical sessions (a bit like PE - and I never did PE at school!) and I've gone independently to and from the campus everyday. Some of these may sound a tad pathetic, but compared to where I was this time last year, there is most definitely a difference!
Anyway, I always say to people progress/achievement is all relative to an individual. For example, I opened a yoghurt pot the other day without spilling a drop. Sounds really funny, I know! To your average everyday person, of course this isn't a progress, or even an achievement, but to me it was most definitely worthy of a dance around the kitchen! It really doesn't matter if you've walked 2 steps, or ran a marathon - don't compare yourself to others & look at where you've come from!
People have asked me 'what has made University not so great for you?' - well, I'm going to be honest as it could affect all of you. The disability support has not been great, which of course is disappointing as surprise, surprise, my disability is the one thing that has the potential to cause the most 'issues'. And, when I don't get the disability support, issues do arise! From the disability side of things, this first year has been a bit like being on a treadmill. I really do want to list everything that has gone on, but unfortunately, it does need handling formally and professionally in the form of an official complaint - so me posting every thing on here would most probably not be the best thing to do, even though I really want to! I am the last person to play the 'disabled card', I just don't agree with doing so and I don't like to let Cerebral Palsy to get in the way of anything, but the lack of disability support has meant it has got in the way.
However, just to stress, I love my course & my tutors - the tutors are fantastic and they are always willing to go the extra mile ... I just wish the disability side matched up! Hopefully we'll get it sorted over the summer and year 2 will run a bit more smoothly!
I am so excited for the summer, and mainly because my time can be 100% committed to CP Teens UK! I have so many things I want to do/need to do for CP Teens UK, but at the moment I simply do not have time, for example, the ball - my summer is going to be full of ball planning, so all I have to do when I go back to University in September is literally count down to the 17th October! I'm really looking forward to going back into CP Teens UK full-time over the summer.
Anyway! Last Saturday, I went RaceRunning with CP Sport. RaceRunning enables people who cannot walk/run independently to sprint. The RaceRunner takes your weight (see below photos) and you basically move your legs as fast as you can, which propels the RaceRunner. I first saw RaceRunning last summer whilst I was at a competition for the Club Throw. I was literally like 'wow, I want a go!', and eventually, last Saturday I had a go and I absolutely loved it! Apparently, I was really good at it too, so I have started training for the World CP Games, which are in August - when CP Sport mentioned the possibility of the games, I wasted no time & I spoke to my coach, who is also very eager about training for August, and we are now in the process of ordering my actual RaceRunner!
You too can also have a go at RaceRunning! I/CP Teens UK have teamed up with CP Sport to bring you a RaceRunning Taster Day on the 5th July at the EIS, Sheffield (see below poster to register).
I'm very pleased to announce that Stratstone BMW & MINI are now supporting CP Teens UK! You may have seen their advert on the homepage and they have some great Motability offers, which you can benefit from if you're aged 16 (if you have a disability, you can learn to drive from 16!) or over. I'm not too sure, but I believe your family can get a car on Motability if you're not of driving age, but don't quote me on that!
Last week, I was lucky enough to have my very own This Girl Can campaign published by the EFDS. I'm sure you've all seen the adverts that show a variety of different women doing different sports. You know the one that goes, 'sweating like a pig, feeling like a fox'? ... That's the one. As a sports student, we have looked at the campaign in quite a bit of detail, so it was rather cool to have my own little version! You can read it here: http://www.efds.co.uk/news/3726_this_girl_can_ellies_story
With the upcoming general election, I have been approached by BBC Look North to go on and speak (again! This is getting embarrassing now!) about what is important to me as a disabled young person. At first, I was aprehensive as I literally didn't want people to go, 'oh god, she's on the TV again ... anything for 30 seconds of fame!' - this is totally not me, in fact, I am quite the opposite. I cringe when I watch myself back, it is the worst thing ever. And the idea that god knows how many other people are watching too is even worst! I spoke to my Mum, obviously, before I accepted and she pointed out to me the exact reason why I set up CP Teens UK was to give teenagers & young people with Cerebral Palsy a voice and by going on the news to discuss what I've been asked to discuss will be doing just that, giving them a voice. I am going to do it, but I'm afraid people will judge it as me trying to raise my own 'profile', which is most definitely not the case!
So, before I go on, I am your spokeswomen! I want to know what's important to you! Whether you drop me an email, a tweet or a Facebook message, I really don't mind! I'd really like to represent us all as a group - it is an ideal opportunity to be heard. My understanding is that Look North are going to take the topics/questions I cover & ask on air to actual politicians for them to respond to, which will be interesting! At the moment, I have identified 2 key areas:
1. Education - in a nut shell, why isn't disability awareness on the curriculum? How do we expect children to understand disability if they're not being taught about it? And why are children deemed to be too young to learn about disability? The likes of me & you had no choice other than to understand and accept disability from day 1 as we have a disability ... all of this links to my 'Education, Education, Education!' blog: http://www.cpteensuk.org/#!Education-education-education/c6vr/48D2C0C2-6D35-41A1-AF4E-37C31148B4C3
2. Health - in a nut shell, when I turned 18, it was as if my Cerebral Palsy disappeared overnight from the health side of things! I was discharged from Children's Services and things were not followed through to Adult Services - and from speaking to many of you, this unfortunately seems to be a bit of a running theme! I now don't receive the same health/medical care as I always had, yet, guess what? ... I still have Cerebral Palsy - what a plot twist, not! I still have the same needs, yet they aren't being overseen. With a life-long condition such as Cerebral Palsy, and with it being a well known fact that it can worsen with age if it's not overseen, I don't understand how we are just 'left'.