Chris Jay- My story ...
In honour of CP Awareness Month, I thought it would share a little of my life story.
I was born on 9th June 1985, the problem is, I was supposed to arrive in August! I was just over a kilogram when I was born, 10 weeks early. A few weeks later, I stopped breathing not long after some idiot decided to take the alarms off my incubator and I turned blue. As such, I’ll never truly know what caused my cerebral palsy (or brain damage), being born early or medical incompetence. This part of my life, however, I don’t dwell on as quite simply there is nothing I can do to change it, nonetheless disability has been a part of my entire life with it being diagnosed ‘officially when I was just under 2 years old.
I have been incredibly lucky that my disability has never really stopped me from doing things I wanted to do and for that attitude (and attitude is by far the most enabling or disabling thing I have learned) I have my parents to thank. They were kind, loving but tough love was always an option if I ever was tempted to let my disability get the better of me, they also had to fight damned hard for me throughout my young life to ensure that I got the best possible medical care and education that was available. I walked with a walker or a stick for many years, and teaching myself physical skills like holding a pencil were hard. By the time I was 4 years old, I had already been rejected by multiple schools because my physical needs were too ‘complex’ for them, with them all feeling that I belonged in a special school despite having no associated learning difficulties. At their wits end, my parents approached Great Ballard School, an independent school near Chichester to see if they felt they could facilitate my learning and they said yes! So armed with what we would these days call a 1-1 teaching/care assistant to support my physical needs, I started school proper, and I began to thrive. Special mention needs to be made of the head, Richard Jennings, who was prepared to look past the difficulties and see me, without the nurturing environment of his school, God knows where I would be now. I owe him and his team, more than I could possibly say. During 1990, recognizing that the school was in financial crisis and to safeguard my education, my Grandfather bought the school which my Mum has been running along with the Head since 1996. I joined the Board in 2006 when I was 21 and I remain actively involved in running of the school to this day.
When it came to secondary school and my limited walking ability deteriorated as I got older and heavier, I chose Angmering School, a state school with a special support unit attached to it . The unit was able to help in certain subjects like science where my limited dexterity could be dangerous (me mixing acids together was thought wisely to be a bad idea!), it also ensured that I got regular physiotherapy and learned to use my new wheelchair. Despite being considered sad by some, the chair allowed me to traverse much greater distances safely and more independently, and within a year I no longer resented it, it represented freedom. I had a great time at Angmering myself but it also was my first experience of how truly horrible humans could be to each other, children were ‘of the unit’ and we had little notations on our school ID cards, other children with disabilities (particularly hidden ones) were mercilessly teased. There were so many life lessons during this period, particularly how lucky I was with regard to my own disability, we lost at least one child a year to Muscular Dystrophy, a very nasty muscle wasting disease, I think I attended a child’s funeral every year I was at the school, it was tragic and incredibly sobering, there is ALWAYS someone in a worse position than you. These students taught me so much, even knowing the inevitability of their outcome, they laughed more and lived more than the rest of us did, the respect I have for them will remain with me the rest of my life. It would also be remiss of me not to point out that I was lucky that my parents could afford to financially offset the negative aspects of having a disability (additional physiotherapy, prosthetics, wheelchairs etc)
Despite these sobering lessons, like a lot of teenagers, I resented my ‘lot’ in life, my body and particularly how I perceived it impacting my relationships with girls. At Great Ballard, I was unique, the only one with an obvious physical disability, at Angmering, I was one of the unit lot and Mum and Dad again found themselves fighting the school to challenge me academically so I didn’t coast. I was lucky enough to meet one of my best friends in this world, Seb during this part of my life. He was completely different from me, where I was reserved and polite, he was bulshy and frequently crass in the extreme but I learned so much from him and we became fast friends, me a civilizing influence on him, and him corrupting me at every turn!
Much of this period is a blur, life moved much slower back then, terms felt like years and school years felt like forever, but I took up tennis and my interest in current affairs grew, resulting in me finally studying politics at University. Crucially, I passed my driving test on the 4th September 2002, which like my first wheelchair gave me huge new levels of freedom and is, without doubt for me the most important qualification I achieved.
Leaving home and living independently was not something I ever thought would happen but with encouragement from my parents and over £2000 spent on a pair of special shoes to go with my splints that meant I could put shoes on myself for the first time in my life, I went to live in halls at the University of Southampton.
Like a lot of people going to university I had plans to reinvent myself as a ‘Casanova’ with a lady on each arm, in reality of course my personality wasn’t going to change, I found myself playing computer games, watching sci-fi and getting as tongue tied around girls as ever. This shared experience led me to bond with Matt, a student with a visual impairment who also hated parties. Like Seb, this man is my brother, loyal, kind and never without sage advice or a good insult if I were to step out of line.
When I did go out, I did encounter a new form of life known as the ‘drunk student’, people without inhibitions who say what they really think about disability or ask the questions they really wanted to know but never had the courage to ask sober. One night when Seb came to visit we were accosted by a very drunk couple who for some reason decided that we were going to be their ‘project’ for the night. At the end of the night, there was a coin toss between Seb and I over who gets to use the tiny lift leading up from the nightclub for which one goes nose to crotch with a drunk boyfriend and which one gets the girl! I lost the toss and got stuck with the boyfriend who asks in this tiny lift “what’s your problem” to which I grit my teeth and say ‘I have cerebral palsy, just a bit of brain damage’, his response I remember to this day “Oh, its not spinal, you can get it up then, that’s great!” Even 15 years after it happened, this still sticks with me which maybe why when Seb called me out of the blue a few years later and said he was doing some amazing volunteering work talking to children in schools about what it was like to live independently with a disability, I jumped at the chance.
I often describe my first workshop delivering for Enable Me, a now defunct but wonderful disability awareness charity as a life changing experience, akin to a religious calling. Using all of the public speaking skills I’d picked up I was able to answer questions and make a real difference to the understanding of young people about disability. I’d gone through many stages in my life, from ignoring my disability, to hating it, to tolerating it but finally, here was something I could do ONLY because I had a disability and it was very empowering and ultimately soothing. The next several years were a blur but I helped the charity out more and more until eventually I was made Deputy Project Manager, then Chairman, then finally Executive Chairman when our CEO left for pastures new. During this time I learned so much about the running of businesses, HR, charities and other disabilities. I loved the work, and ultimately it was why I set up Bascule Disability Training after Enable Me closed during the recent schools funding crisis. I had already developed training for businesses at Enable Me and I took all of that experience to where I am now, it also allowed me to reconnect with Seb after we drifted apart some what during our early University years.
Bascule operates a refined model of using the money it makes from training businesses to offer free workshops to state schools so important awareness raising work can continue. Of recent years, there is little to say I suppose, many of the people who help build me into the man I am today are gone now, my father Brian at the age of 72 and Seb who tragically passed away at the age of 32. I honour them both in my work, and keep them with me every day. They both taught me to take every opportunity that comes my way and I live by that.
I hope my story underlines the importance of CP Awareness Month, I am very proud of what I have achieved, but getting to where I am today has been a struggle, not just for me but for my family ensuring that I got the right opportunities in life. That struggle has made me to be sure BUT I think it is incumbent on us to do better a society to support people with disabilities to be given more opportunities without having to fight every step of the way.