I have written this article for a newsletter in Hounslow disability, but thought it would be nice to share here too –
My journey to where I am now in 2010 started in 1983. Funnily enough I don’t remember that September day so well. Fast forward 18 months and I was then diagnosed with a condition called Spinal Muscular Atrophy (SMA) which is the damage of a little cell at the top of my spine genetically. The result is the messages that are sent from my brain to my muscles are blocked. I have full feeling everywhere, but very limited muscle power and use a wheelchair and rely on full time care for dressing, cooking, washing and so forth.
Honestly I have never really dwelled on the cannots. I went to mainstream nursery and school. Mum and Dad from my understanding did have to do some stern talking in the first place but once I was there, I really was just one of the kids. They catered well for my additional needs and I recall childhood in a very fond way. I remember playing football and tapping the ball in with my chair on the back post many times!
Secondary was a little tougher. The local school was inaccessible and not able to make the necessary changes to cater for me. So I had to take a 30 minute journey to another school along with 4 other students in the same boat as myself. They were the first disabled people I had met and this time was very healthy for me. See, the earlier years taught me to be included and not dwell on my disability. However as I hit my teens some things just were different and realising I wasn’t the only one was good. To also have the unit for disabled students present meant I had physio, swimming, horse riding and general support, but I was still included and the only disabled person in my classes.
After receiving my GCSE’s, undergoing major spinal surgery for my curvature and then gaining my A –levels, I headed to university. This was a massive step as I had never left home for longer than a week with school. By getting used to new care it opened up the world for me. I learnt to drive, had 1 or 2 relationships with beautiful girls from around the world, gained a BA in Econimics, MA in Marketing and met so many good people and shared great times. I also travelled during this time to Australia and broadened my horizons on politics, culture and life.
So since graduating I began working at the disability charity Scope in a HR admin role. From there I have progressed into their Fundraising team 2 years ago. This enabled me to use my Marketing and also for a great cause. This made it possible for me to move from my family home in Cambridgeshire to London. Now I live there independently through direct payments and have my own flat. I love it in London with so much choice and opportunity.
I am now working to pass on my experience to other disabled people with my blog www.martynsibley.com, writing articles like this, setting up new and innovative events such as lazer battlefield and encouraging others to e campaign. I think there would be a whole other story in my move to London and e campaigning but I will stop here and hope some of my experiences resonate and maybe inspire you guys. Do contact me if you have any comments or questions at [email protected].