I had discovered bullying because I was starting on my journey to be different. I didn’t really have much of a clue about what was happening with my body, all I did know is that I kept seeing doctors. I learned to keep my head down and watch my parents as they struggled to understand and deal with me.
At the cusp of my sixteenth birthday my body or rather my brain underwent changes the doctors did not or were unwilling to accept. I spent about three weeks in hospital because something I later learned was called Dystonia had changed. It had got much worse my foot twisting up my hand and arm twisting up muscle spasms and uncontrolled movements had their merry way with my body. My parents despaired of me, they had been told during my stay in hospital there was nothing wrong with me, that I was acting out to get out of sports at school. My parents believed them for nearly two years. I was now not only bullied at school but at home as well. It was to be honest one of the most difficult times of my life. I believed the doctors and at the same time I couldn’t understand what was happening to me, I can’t say I lived through this period but I can say I survived it.
Finally things changed I survived school and the sixth form and I spent a year on benefits before the universities offered me a place, that year will be the focus of my next piece, so I’ll leave that chapter alone. At university I learned more survival skills learning to fight for knowledge of my body and why it had changed, I still for the most part kept my head down and remained isolated with no real support but I was learning about people, not so much consciously as unconsciously. I eventually gained opportunity to confront the consultant who had said there was nothing wrong. I placed it at his door that there was and that I needed answers and I needed them there and then. He admitted that there was but because he couldn’t say what the cause was he would not give me a name or diagnosis.
With that knowledge I pressed other doctors for answers, to cut the story short I spent six months visiting my G.P. on a weekly basis and because my notes were with the university’s campus doctors he struggled to do as I asked. I think in time he grew tired and that prompted him to phone the consultant I had seen as a child. It was a bank holiday and my G.P was unable to speak to anyone but the consultant’s secretary. With a bit of schmoozing my G.P persuaded her to send some relevant information from my notes to him. It was quite a performance on his part and I was enthralled as I listened to his patter. A full week later I entered his consulting room and my G.P read out a succession of letters he’d acquired, the names dystonia, Hemi-Dystonia Torsion Dystonia and Dystonia Musculorum Deformans rang in my ears I sat in shock as he went on to read about damage in the right Basal Ganglia of my brain and how this was concurrent with the diagnosis.
My G.P. put the letters in my hand with the words you do what you need to do these should help. I left the surgery in shock I leant against the wall on the way to the bus back to my parents, I read the letters for myself put them back in the envelope and stuffed it in my jacket so my parents wouldn’t see them. Although they would eventually find out it would be on my terms and in my own time.
At this point I had finally become a person with a diagnosis a medical condition, the all important label I’d been looking for. When I got back to university after the holidays I hit the books in the medical library trying to fathom what this label meant. I slowly realised that my journey wasn’t over I needed more than just a label, that Dystonia didn’t explain it all.
I left university and using voluntary work to gain experience I started working in social services, initially as an occupational therapy assistant and later as a hospital social work assistant. Whilst my new label helped me get the job and later when it didn’t work out it helped me get redeployed to the social work position, it certainly did not help me do the job, well not in the eyes of my colleagues who could not recognise the merit of my difference and since the concept of reasonable adjustments had not yet been sanctified in law both positions proved too much for my new label, after a period of bullying and not coping well with the physical side of both jobs I left social services to go back to university and study social work.
It was at this point that I really began to learn about my label, and about people and equality. I realised that I was fascinated by the concepts of oppression and discrimination; they seemed to resonate in my psyche. On a trip to the bookshop I discovered a whole section on disability, I bought a few and began to discover that my label was an impairment and any concept of disability lay outside of me, that in effect I was disabled not by a medical condition but rather by society and its attitudes. I had found the social model of disability and I was hooked. It seemed to give me tools I was no longer the problem or the reason for discrimination, it gave me an identity in a political sense, but I also realised it didn’t have all the answers, but a bit of rounded reading and some deep thought gave me those.
These new discoveries came at a very interesting time: 1994/5. Over the past few decades disabled people and there organisations had been developing the social model of disability and campaigning for equal rights legislation, bills had been through parliament and lost one bill in particular had with the support of a high ranking conservative M.P’s daughter got as far as debate in parliament and was likely to be a success but the girl’s father talked the bill out, that is he spoke for too long as a means of blocking the time allotted for the bill. That became a headline news item, one I noticed and became intrigued by. Through the universities support staff I discovered a local group of disability activists and joined there ranks.
By this point the disability discrimination act had come to pass, but the implementation of the act was taking time, a lot of time. The part relating to access to goods and services looked like it might take years to be implemented and what did disabled people want? Well we wanted civil right and we wanted them now, including the right to get on buses and trains. The organisation I had joined was part of a national campaign group called the disabled peoples direct action network or D.A.N for short. Our aim was to draw attention to the right to ride campaign and civil rights in general by stopping anyone from using the transport system in a given city through direct action and civil disobedience. We stopped buses in Nottingham by chaining ourselves too them on the key roads in and out of the city bringing it to a standstill. We took over a bus station in Derby and attempted to build an ad hock concrete ramp outside a train station entrance. In London we were corralled by the MET. In Birmingham we brought New Street to a standstill.
We met prejudice and inhumanity from inconvenienced shopper’s one woman told us we should have been suffocated at birth, a bus driver in Nottingham tried to set off with someone handcuffed to his front bumper. In Derby a bus driver tried to drag a woman in her electric wheelchair away from his bus by her arm. We were arrested and de-arrested, some police were sympathetic and it was often quite surreal. We were even under surveillance at times by what at the time we thought were transport police.
In time we made progress some bus companies and rail companies started talking with us to negotiate change. I moved away from the university town to Shropshire for work. It’s a different world now and my thinking is different. We have a new act to replace all other anti discrimination act and there seems much more awareness in society about disability, yet people with disabilities still remain out of work, dis-empowered and discriminated against. I could debate this all day but I think I’ve made my point ……
To find out more about Dystonia click HERE
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