As you probably already know, last November I had a feature on BBC Look North (Yorkshire), and less than a week later by pure fluke, I was on again galavanting around the Peak District - I am an Ambassador for Accessible Derbyshire, and I went along as they asked me to launch 'The Big Push', which is a project that aims to make the Peak District the most accessible national park in the UK, and Derbyshire the most accessible county in the UK. My face when I turned up to launch The Big Push was a picture when I saw the Look North crew ready & waiting - I was literally like "oh no, not again, I couldn't have had 2 seperate appearances in under 1 week if I had tried!".
Anyway, as you know from my previous blog post, in early March, I was asked by the BBC if I would consider filming for the general election and how it relates to me as a disabled young person. My initial reaction was 'no!'- 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! But, my Mum convinced me a) it was the right thing to do to accept, and b) people wouldn't think I was 'fame-grabbing' (apparently!). 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.
So, I did it! And unfortunately, not everything was covered that I wanted to cover. I covered:
1) Health/the NHS and the fact that with a condition such as Cerebral Palsy, once you hit 18, it appears that you get 'dropped' overnight - it's as if your disability magically disappears overnight because you become an adult!
2) The transition process from disabled child, to disabled adult is non-existent - I left school with decent GCSE's & A Levels (if I do say so myself!), yet I had absolutely nothing to do other than go home and watch daytime TV. No one knew what to do with me. People thought I was quite capable of going out and getting a job (job opportunities are rather limited when you have a disability, and that's before you add the fact that I have virtually no hand function into the equation - shop assistant is out, check out girl is out, shelf stacker is out, waitress is out, answering a phone is out etc. the list goes on!). Or, you had people who thought the complete opposite and thought it was quite acceptable to put me in some kind of day centre and have me singing '10 Green Bottles' day-in, day-out! Really? After doing A Levels?! I am lucky I found a 'way through' and I discovered sport, which has led me onto everything I am doing now, but that's not the point!
I also wanted to cover how I feel disability awareness should be on the national curriculum. You can read my blog post on this here: http://www.cpteensuk.org/#!Education-education-education/c6vr/48D2C0C2-6D35-41A1-AF4E-37C31148B4C3
(Obviously not the real David Cameron, but I thought it was fitting as the filming was for the General Election!)
So, the 2015 Athletics Season is nearly upon us, and for the first time ever, I will be competing on the track as well as the field. I am actually so worried about the starting gun. For anyone who knows me well, they will know how difficult it is going to be for me not to jump at the gun! And in both respects - going before the gun, and jumping at the actual noise! It is something I am going to really have to practice over the next couple of weeks as if I go before the gun, it will be automatic disqualification, and if I react badly to the noise and initially go backwards instead of forwards, I could loose vital seconds.
Strangely, I won't be racing against anyone. It will be a race against myself, but I have to complete the 100 meters in roughly 34 seconds to gain a place for England in the upcoming World Games in August - no pressure then! Believe it or not, it is the seat on the RaceRunner that really slows me down - it actually gets in the way, and the pain as you run and hit your thighs against it is not for the light-hearted! And, I never knew just how far 100 meters really was!
On May 9th, I, along with Laura & Nikki (who I both met through CP Teens UK), will be going to the Disability Rocks festival with a CP Teens UK 'stall'! The stall will have all information about CP Teens UK, how you can get involved, all the events you can come along too, disability sport information and lots more! You can also hear first-hand from Laura & Nikki how they've used and benefitted from CP Teens UK.
(Laura, I & Nikki)
This week, Zachary Fennel has written the following guest blog. Zachary lives in America, and he is the founder of CP Chat Now, which some of you may be aware of. Thanks Zachary!
The Need for Awareness Within
"Greetings CP Teens UK blog readers! I’m American author/freelancer Zachary Fenell and I’m excited for the opportunity today to share with you via this guest post. Ellie has created an excellent resource here and now I can enjoy my turn to contribute! To start let me give you some background on me.
Next month I turn 28 years old, so no I’m no longer a teenager. In fact with each day my teen years become more a distant memory. Yet I managed to preserve my teenage experience through writing my memoir Off Balanced. I refer to Off Balanced as my teen memoir, exploring how my own mild cerebral palsy affected me socially throughout adolescence.
Growing up I remained very self-conscious about my CP. Cerebral palsy left me feeling weak and inferior which led to embarrassment and frustration. Consequently I became rather timid and shy. An epiphany at my high school graduation helped spark an attitude change though. In college, or as you would say university, I blossomed into an outgoing person who learned to embrace his CP.
The above segues into what I wish to discuss today, the need for cerebral palsy awareness within the CP community. Surely that sounds odd, especially to my fellow 'ceeps'. After all living with the condition makes us pretty damn aware, right?
Please hear me out before writing me off as nonsensical. Yes, living with CP makes us knowledgeable but only to a certain extent. Since cerebral palsy exists on a relatively large spectrum our own cases only represent a snapshot. Imagine cerebral palsy as a puzzle. Your individual case equates to one puzzle piece. The more cases you become familiar with the better you can understand cerebral palsy as a whole. Just like how the more puzzle pieces you connect, the clearer the puzzle’s picture becomes.
Funny my mother and physical therapist use to try to break my old negative outlook on cerebral palsy by stressing this point. I’m sorry let me try that again with my best English accent. Funny my mum and physical therapist use to try to break my old negative outlook on cerebral palsy by stressing this point. They spoke about how others out there dealt with more severe cerebral palsy. Nonetheless I stuck to my negative viewpoint.
Reflecting back I believe my isolation from the cerebral palsy community caused my mum and therapist’s valid point to go unheard. I graduated high school in 2005, when Myspace ruled the social media kingdom and Facebook remained a university-students exclusive club. Twitter did not exist. Only the birds tweeted!
Thanks to social media’s growth the last 10 years the cerebral palsy community became more connected. Personally between writing for websites like http://themobilityresource.com and http://thinkinclusive.us and helping found the weekly live cerebral palsy Twitter chat #CPChatNow (every Wednesday 8pm ET), the appreciation I discovered for my CP in college reached new levels the past half-decade. By cultivating relationships with other ceeps I’m putting more pieces to the cerebral palsy puzzle together, improving my ability to serve as a CP advocate.
To conclude let me challenge you to increase your cerebral palsy awareness by connecting to the cerebral palsy community. Begin with me. Read my memoir available on the Kindle and Nook (links to UK sales pages). Then come contact me and tell me about you. You will find my information at http://zacharyfenell.com. American readers you will find the links to Off Balanced’s U.S. sales pages there too.
I look forward to connecting."