Hi! My name is Ellie and I am 28-years-old. I have Cerebral Palsy, which I’ve had since birth. My Cerebral Palsy affects all four limbs and my speech. I can and do walk, although I tire very quickly. I also have poor hand control meaning that I struggle with upper limb coordination and tasks involving fine motor skills, for example, cutting up food.
I went to mainstream school from the beginning of my education. Overall, I really enjoyed school and I got a lot from it. It was a struggle to keep up at times from a physical point of view as my output speed was a lot slower than my able-bodied peers and I also fatigued quickly. However, I understood everything, I was a quick learner and I got good grades, including at GCSE & A Level. I just had to ensure I was disciplined & organised in order to keep up, albeit usually a few steps behind my peers.
I also enjoyed school socially and it is fair to say that up until GCSE I had lots of friends. I think I was always aware that I was different, but this wasn’t too much of a concern to me prior to GCSE as I was always made to feel included by able-bodied peers. There were a few hiccups towards the end of junior school such as not being invited to parties & one peer who decided to be particularly cruel, but I was lucky that my able-bodied peers & their parents mostly ensured that I was included.
At the age of 14 I started my GCSE’s and this was when things started to ‘shift’. A combination of factors came together and changed the dynamic – at school, we were mixed in with new peers from the other half of the year group in line with our individual GCSE choices, we had hit that age where anything that was different or not in line with the norm was ‘not cool’ or acceptable, and I had naturally become more self-aware & therefore more self-conscious. It was evident that the people from the other half of the year group who didn’t know me didn’t really know how to interact with me even though in reality, they only needed to interact with me like they did with everyone else! My friends who I had been with all the way through school clearly picked up on this barrier, as well as trying to safeguard their own image in not wanting to look ‘uncool’. I was left out and not included in anything socially outside of school by new peers, and my old friends followed suit. I was also much more aware of my disability – my confidence took a hit both from being left out & being more self-conscious.
Unfortunately, things got worse as we moved into the Sixth Form to do A Levels. Once again new peers came into the mix, but this time they were from different schools from across the town & local area. I was hopeful to begin with and I hoped that come the Sixth Form that people would be more open minded & mature. On the first day of Sixth Form it quickly became apparent that my friends had failed to include me on their form group list – in the Sixth Form you were able to select who was in your form group. For the next 2 years I became increasingly socially isolated and I was excluded from a lot of social things both in & out of school. As we all turned 18, everyone started going out clubbing. I was desperate to be invited and to join in, even if it was only once and even if that once was for my own 18th birthday. I decided to ask my friends if I could join them one night, even just for my birthday. The response I got was “a nightclub is no place for you Ellie, don’t be stupid”.
It all came to a head when it was the Sixth Form prom. I ended up not going out of principle as no one would include me in the arrangements to go the prom, nor assist me at the table – I don’t need a lot of assistance, but having someone to cut my food up and ensuring I have a drink on a table with a straw is essential. I also didn’t want to arrive alone. It was at this point I realised that they weren’t worth it and that there had to be a better way.
As well as feeling very socially isolated, I didn’t know what I wanted to do beyond school. I was academically capable of going to University and I had the grades to do so, however at that stage I had no idea what I would want to study, let alone if University was right for me. One thing I did know was that I wanted to take some time away from education to regroup, recharge and work out my path. I was hoping to obtain opportunities to help me with this, as well as to build confidence & relationships to help with my sense of isolation, such as volunteering. I was realistic in the fact that I wasn’t going to be able to do the ‘normal’ things people my age taking time out of education do, such as travel or get a part-time bar job. However, I was excited at the potential opportunities nevertheless.
My excitement was short lived. It was as if every door was closing one by one. My school didn’t know what to do with me – unless I was going straight to University, or alternatively to a specialist disability college, then they didn’t want to know because they didn’t have any answers. I was virtually told to go home and watch daytime television. I was so frustrated & disappointed at the lack of opportunities out there for me as a physically disabled young person, and I couldn’t believe that the system would allow me to sit on my sofa forever more because I was disabled.
My Mum and I said, “there has to be something out there”. Although, there was nothing out there – nothing for people who had all of their buttons switched on but were physically disabled. If I have had a learning disability, then there was a long list of opportunities, social outlets & clubs – even at my local church just a 5 minute walk away. This is when CP Teens UK was born. I thought I couldn’t be the only teenager with Cerebral Palsy with these experiences, and I wondered if I could somehow connect young people like me to help & empower.
10-years-on CP Teens UK is a registered charity (1172105) providing ‘help, hope, inspiration & friendship’ for children, young people & beyond with Cerebral Palsy and similar physical disabilities. We provide and deliver a whole host of events, social activities & initiatives, including an annual Ball, social get togethers across the country and disability sports. CP Teens UK provides a safe & supportive network, opportunities, friendships, and it gives a voice to those who often feel unheard due to disability. 
Setting up and running CP Teens UK has been a life changing and life enhancing experience. It is always incredible to hear & see the stories of friendship, as well as the stories of youngsters finding new opportunities and outlets through our initiatives. I have finally been able to surround myself with people & friends who ‘get it’, and seeing this happen for other youngsters is even better.
I now thank my so-called friends at school, as well as all the opportunities that were off limits to me, because ultimately it has opened a huge door in the long run and not just for me, for so many youngsters & their families.
Take the rough with the smooth and find your tribe!
For more info about CP Teens and the support it provides to young people with Cerebral Palsy, click here : CP Teens UK
This guest blog is part of our 40 stories for 40 years’ series, celebrating our partnerships over the years. Click here to read more blogs in this series.
