This is an article I have written for an international medical journal. It also acts as a reminder of why I keep this website flowing. Furthermore being quite sensitive I do like a reminisce! Hope you like it.
Having read the article written by Patrick Moeschen I was inspired to contribute to the social model discussion and how this perspective also enhanced my story. My name is Martyn Sibley, I have type 2 Spinal Muscular Atrophy (SMA), I live in London and I am now 26 years old. Like Patrick, my upbringing was ‘normal’ and very much a can-do approach. Having used a wheelchair since 3 years old, requiring support for transferring from my bed to the chair etc, assistance with personal care, cooking, turning at night and other daily chores this is not always an easy scenario. I went to mainstream school, enjoyed family holidays with my mum, dad and sister (who is unaffected), socialised with friends and overall enjoyed a great childhood.
Fast forward on and I managed to gain good school and college results. Having been so integrated and encouraged at school is the reason the following was possible. Firstly I got into university and took my first steps (so to speak) towards independent living. With a team of 4 carers in a city called Coventry (in the midlands, UK) my life took a massive leap. I met many amazing people from around the world, broadened my horizons and learnt the art of drinking while staying up very late. I met many beautiful girls and enjoyed 2 long term relationships. Furthermore I gained a 2:1 in Economics followed by a Masters degree in Marketing. I managed to learn to drive in these years and took a trip of a lifetime to Australia via Singapore which was extraordinary.
Having laid these foundations for myself I left university, worked for one year at a national disability charity called Scope from my little home town, before realising I needed more. I managed to secure a similar job but in their headquarters in London. The plans took shape and not before long I was moving into my 2 bedroom flat, with a personally employed team of carers and the world at my fingertips. Soon after I received promotion into the fundraising team. This allowed me to use my degree subjects in a job that was so worthy and supportive of disabled people. Prior to this I had dreamed of London but with the dog-eat-dog lifestyle of the ‘City’, money and pressure. I soon realised I needed job fulfilment, not just the big pay cheque and I realised my body wouldn’t sustain such hours long term.
Around this point I was introduced to the social model of disability by Scope. It has been liberating to not see my disability as the problem, but instead a blip in the structure of society. By seeing 3 types of barriers; physical, attitudinal and organisational things fall into place. When a building has steps I am disabled, when there are ramps I am not. When people assume I am less intelligent because I use a wheelchair I am disabled, when they get to know me I am not. When employers assume my physical limitations mean I cannot work I am disabled, when they choose the best person for the job I am not.
I then carried out some talks to the youth group of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA – charity for people with my disability). The buzz I got from lighting a fire in these kids showing despite their disability anything and everything was possible – I was living proof. I decided I wanted to do this to a larger audience and setup a blog. This was when www.martynsibley.com was born! Through daily updates on my activities and more political articles, the use of photos, videos, Twitter and Facebook I now reach nearly 1000 people. Some are disabled looking for inspiration, information or just someone to relate to. Others are not disabled and hopefully having their attitude of disability realigned with reality, or possibly to just look at the crazy life I lead.
Recently I have delivered workshops on practical tips and advice on disability, flown a plane, recorded a song and agreed to appear in the fashion show www.disabledandsexy.co.uk for the JTSMA. The sky really is the limit as long as I am working, sharing my experiences and always smiling. Whatever happens I believe the world for disabled people has sunnier days ahead.
