This is my first blog post doing CP Teens UK full-time, and I'm loving it! The last time I was in CP Teens UK 'full-time' was during my gap year prior to University. The reason why I used inverted commas around 'full-time' is because at that time (my gap year), I had just started CP Teens UK up - it was tiny and nowhere near required the number of hours it needs putting in now (and that is not a complaint!). I had no definite vision for CP Teens UK back then, it was just more of a question of "let's give it some water & see how it grows...".
As I finished the last blog post saying - I don't understand how I developed and ran CP Teens UK as I did whilst I was at University, without sounding as if I'm blowing my own trumpet! I honestly couldn't tell you how I did it. The past 2 weeks I have been 'tapping away' on the computer solidly for things relating to CP Teens UK either directly or indirectly - I have constantly been thinking for someone who works at half the speed of an able-bodied person anyway, when did I even do my Uni work?! It is one of life's great mysteries!
Anyway, as I have come into CP Teens UK 'full-time' (I have got other bits & bobs, but I am virtually full-time with CP Teens UK) I got thinking back to how all of this, i.e. CP Teens UK, came about - by this, I mean how it actually all snowballed rather than my story behind that moment I went "Right! It's time to do something about all of this!". Social media gets a lot of bad press, and don't get me wrong, it is the cause of many problems and unhappiness in today's society, particularly among our age group. However, if it wasn't for social media, CP Teens UK would not exist - even if it did, it would not exist to the extent it does.
There are 2 angles to this. The first angle is pretty short and sweet - social media gives you the ability to reach out and connect with hundreds and thousands of people from all over almost instantly and for free. This was an invaluable tool when starting up CP Teens UK and it still very much is invaluable to the charity. In 2013, I went from knowing one other person with Cerebral Palsy who was 4-years younger than me, to knowing hundreds. I never knew there were so many 'me's' out there - and, I am so grateful and happier than words can express to be able to now call many of them my best friends.
The second angle is somewhat specific to Cerebral Palsy/similar disabilities. In the 'real world', there could be said to be an obvious difference between me and other people - this means that I am often reluctant to use my own voice and stand up for myself. Even when I find the confidence to do it, I often struggle to make myself be heard and to be counted for. However, on social media, I am on a total level playing field - I can speak and get my points of view across just like everyone else on social media. Social media gave me the power to actually implement my idea of CP Teens UK independently after my "Right!" moment.
I was confident to say on social media "I'm Ellie, I have Cerebral Palsy and this is my new idea 'CP Teens UK'" - if I had to have gone out into the 'real world' and verbally get my story out there, I would have fallen at the first hurdle (but I suppose hurdling with Cerebral Palsy would always end in tears, haha!).
It is easy to both underestimate and forget what a vital lifeline social media can be for people with physical disabilities, especially those with communication difficulties. Prior to me starting Uni, I was able to talk to people on my course over Facebook. This really boosted my confidence as we were able to get to know one another on a level playing field. I was able to 'casually' drop out at a later point that I had Cerebral Palsy and by that point, they had established that I was a completely 'normal' person so unless they were total twits, the friendship just kept going as it had done.
I know Gavin won't mind me speaking about him as we have spoken about the social media benefits for people like us before! Gavin is one of my best friends - we met both through RaceRunning & CP Teens UK. Gavin is one of the most intelligent, sharp, witty & kindest people I've met. Gavin's Cerebral Palsy means that he cannot speak - but, it most definitely does not mean that he has nothing to say, in fact, quite the opposite! People who don't know Gavin often very wrongly assume that he hasn't got anything to say, or he's in someway intellectually effected - which happens with many people with Cerebral Palsy, it happens to me all of the time despite the fact I've just graduated from University!
Gavin has a communication device, which enables him to have a conversation. I love my conversations with Gavin and the fact that it takes him a little longer to respond back through his device does not make me bat an eyelid. In fact, it helps me out - I can often get a little bit flustered trying to speak & articulate at a fast speed in a conversation! But, not everyone 'gets it' - I've also witnessed this with some of my other friends who use communication devices with people often trying to finish their sentences for them. No, just no!
But, when Gavin is online, he is able to speak just like everyone else. Only last month, he did a session on the CP Teens UK Twitter account - 'Ask Gavin', where he was answering questions from the public. This would have been difficult in 'real life' (but not impossible) but, 100% doable on social media.
I & Gavin talk regularly over Facebook and we are both able to relay articulately to one another exactly what we want to say - and, our conversations are often rather hilarious and often involve our future plans to take over the world as a double act, haha!
Never underestimate what anyone has to say, physically disabled or not, and never underestimate how powerful social media can be when used correctly. It has changed my life and given me a voice that I would never have had.
I haven't planned this at all, but this leads on very nicely to the Guest Blogger! Penny Joelson is an author and has just had her new book, 'I Have No Secrets', published. It is about a young girl who has severe Cerebral Palsy and cannot communicate, however, she knows all the secrets to a murder! Thanks Penny...
When I set out to write a thriller for Young Adults, I had the idea that the one person who knows the identity of a murderer is unable to tell anyone. My main character Jemma appeared in my head as a fully formed person, eager to tell her story. Jemma has severe cerebral palsy and is unable to move or communicate. I don’t have cerebral palsy and I can communicate. I wondered if I could accurately reflect what Jemma’s experience might be. When I looked for other books with main characters with cerebral palsy I was shocked at how little was out there. This made me even more determined to write Jemma’s story.
I believe people with disabilities have a right to find their lives reflected in fiction and fiction can also help everyone to think about experiences outside their own and to be more aware.
I used my imagination but also drew on my years of experience of voluntary work with disabled people including people with cerebral palsy. Another influence was ‘Paula’s Story’, the Chicken Shed Play about Paula Rees, who was unable to communicate until she was ten years old. I did research online to find a suitable form of AAC for Jemma.
I talked to people with CP and got people with CP, family members and people who work with people with CP to read early drafts and give me valuable feedback. I made changes as a result but was relieved and pleased that the response was overly positive to the book.
I hope that as a thriller, the book will have wide appeal and that Jemma’s strong, positive character will have an impact on attitudes.
I am keen to hear from CP Teens readers who read the book. I’d love to know what you think! As a Creative Writing tutor at City Lit, an Adult Education College in Covent Garden, London, I am also keen to encourage disabled people who would like to write to come to courses. City Lit is a wonderful, accessible and welcoming college. We need books to reflect diversity and we need more diverse authors too.