I’ve had a crazy busy couple of weeks, so please forgive my lack of blogging. The craziness started when I took past in a creative workshop and performance of the fantastic new play by Mike Dibb called “Present Tense”. It is based on a short story by Celi Duran, and examines the lives of three people who have recently become spinally injured. The play is set in the late 1960’s in New York and is a really powerful piece. I won’t tell you all too much about the plot, as everyone involved is hoping it makes it to the stage. That way you can all come and see it without having me spoil it for you.
The weird thing is that working on a play about experiences that I had already been through reminded me of the journey of emotions that anyone coming to a disability has to embark on when they are given the big news. Although I have always been disabled, I did go through a spinal injury in my teens, and so found acting the part of someone newly disabled took me back to a time that I would rather forget. I hope that everyone who reads my blog knows that I am very proud of my disability and how it has shaped the person I am, a person I like (modest as usual). I know that without my disability, and all of the changes in ability that I have gone through I would not be who I am today. But I do tend to forget that it wasn’t an easy journey. Early on, just after my spinal injury, I couldn’t see a future for me at all. I was sure I would never find a lover or get married, had seen any chance of the career I wanted to pursue disappear and really felt that my life was over. I will admit I even considered suicide at a couple of points. I only stuck around as I still lived at home and thought it was unfair to leave the job of discovering me to my family.
Luckily, this reason for sticking around made me start to re-evaluate my life and future. I gave up on the steady job and family plans, and decided to just enjoy life. So began my crazy journey through the world of rock and roll, the media and some of the extreme things I have done. I look back on my life, and I’m only half way through, and know that I have lived the kind of life most able bodied people would be jealous of. One thing for sure, no one can say that my life has been the stereotypical idea of the life a disabled person would live.
The character that I played in Present Tense had a similar attitude towards coping with his disability as I had back then. If life threw something at me, instead of it getting me down or putting up with it I fought back. It started when I found I couldn’t go to my local cinema in a wheelchair. I contacted the manager and within a few weeks a wheelchair space had been installed and a new level entrance was created. This spurred me on an soon I was fighting the good fight everywhere. I even started building my own wheelchairs because the ones I was given on the NHS were crap. The Present Tense me also did this. By the end of the week, I really felt like I had got back in touch with the younger me and I felt somehow reinvigorated.
Which was lucky, as after the play finished I met up with Jennie Williams, who is about to start up a new charity called Enhance The UK (website going online soon). It is run by disabled people, and they plan to offer help, advice and friendship to other disabled people. Jennie sees it as a tool to allow disabled people to help other disabled people do… well anything really. Whether it is finding someone to go down the pub with, a buddy to scuba diving with, someone to chat with about any problems or a source of advice on the myriad of stuff that comes with a disability. I signed up to help, with issues around sex and relationships (way back in the early 90’s I did a load of stuff around this kind of thing on C4, and have wrote a few guide books and articles on sex and disability), confidence (say no more) and other stuff like access and rights. Hearing some of the stories of people that Jennie has met reminded me that even though Present Tense was set in 1960’s America, the experiences of the characters are still really relevant. Frighteningly so.
However much disabled people have gained rights and equality over the past 50 odd years, the actual experience of coming to a disability seems to have stayed the same. Mostly because the stereotypes of what being disabled is have stayed the same. No matter how many people like myself, Ade Adipetan, Shannon Murray, Julie Fernandez, Mat Fraser, Gary O’Donahue, Liz Carr etc seem to break the mold, the world still think that disability equals the end of your life. I have no real idea of how we change that, as it seems that however many positive role models of disabled people exist being disabled is seen as a totally negative thing.
One day we might enlighten the general public about disability, but the most important thing right now is making sure that disabled people feel OK about themselves. Becoming disabled is NOT the end of your life. It may be a change in the future you had planned, but it is the start of a new life that can actually end up being more fulfilling and enjoyable than the one you left behind. I know that the life I would have had without the my wheelchair would have been no where near as fantastic as the one I had with wheels. So watch out for the Enhance The UK website when it comes on line. It’s going to make a real difference. And keep your fingers crossed that Present Tense goes into production. Not only will you get to see me playing a hippy, but witness a piece that makes the audience question what they think about disability.