Mik Scarlet: I don't want a normal life. Why does that shock you?

'As disabled people, we should have the right to be as socially acceptable as we want to be'
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The Independent Online

I don't normally get asked to write articles on such a sensible topic as social rights. I usually get asked to write about sex, clubbing, partying, fashion and sex again. But then, I think that's what social rights are, really. The right to do what everyone else does - what everyone else takes for granted. I have always felt that during the fight for civil rights for the disabled, those at the front line sometimes forgot that there is more to equality than just having access to public transport or the right to work.

I don't normally get asked to write articles on such a sensible topic as social rights. I usually get asked to write about sex, clubbing, partying, fashion and sex again. But then, I think that's what social rights are, really. The right to do what everyone else does - what everyone else takes for granted. I have always felt that during the fight for civil rights for the disabled, those at the front line sometimes forgot that there is more to equality than just having access to public transport or the right to work.

In the past, I have been condemned for being too interested in having fun, but this once very unpopular view is now becoming more accepted, even trendy. With campaigns like "Attitude is Everything" (the new drive to make live music venues and clubs accessible to us disabled types), the right to entertainment and enjoyment is now being acknowledged. I see the fight for equality as the fight to do what you want to do, to live your life your way.

I came to disability in a kind of two-pronged approach. I was born with cancer. I was one of the first children in the world to be cured of childhood cancers like mine, after an experimental drug was tested on me. Monkeys first, then me. But this wonder treatment left me without much chance of ever running, walking or even sitting up, according to the doctors.

But I was soon walking with a caliper on one leg and, at the age of five, I started at Stopsley Infants School in my hometown of Luton. It was a normal school and I was the first disabled kid ever to go there. This was the start of my personal battle for social rights. My mum tells a fantastic story of watching me from the school gates as I limped into the school playground. Kids being the evil little thugs that they are, within seconds I was being bullied mercilessly. As she started to rush towards me, intent on saving me from the taunts, she saw that instead of just crying, I was kicking the stuffing out of my tormenters with my caliper-covered leg. She knew I'd be OK from then on. And I was. This approach is one I still use today - OK, not with my legs (their kicking days are over), but with my acid tongue.

So being a good, brainy kid, I sailed through school. But at the age of 15, my spine collapsed (as a result of the treatment I had been given as a baby) and, thanks to a mistake with a scalpel during a spinal operation, that was the walking-wounded part of my life well and truly over. I was now a fully paid-up member of the wheelchair-using crew.

Once during my nine-month illness, I was told (wrongly) that I had terminal cancer, and I had to spend 24 hours thinking of all the stuff I had never done. I had never dyed my hair, I'd never been out all night, but, most importantly, I'd never had sex. It was this event that started me off on my "you only live once" lifestyle. Luckily for me, a lovely 19-year-old trainee nurse took pity on my virginal state.

On leaving hospital, and with it nurse Tina, I found the world outside was not as accepting of a wheelie as it was of a limp-a-long. All the places where I might make new friends were up stairs, so I spent my first year after hospital in my bedroom, dying my hair very funny colours and teaching myself to play synthesisers. I started at Luton Sixth Form, the first disabled student there too, and formed my first band. I began living - drinking, partying, dressing like an alien, and of course, meeting girls.

Something that has always shocked me is the way that seemingly tolerant people are so shocked by my wanting to not have a normal life. Not only the able bodied, but disabled people, too. I knew after my time lying in a hospital bed that I did not want to just get a job, get married, produce my 2.4 little Miks and then die. I did not want to conform, and this is where I believe the fight for social rights come into the fight for civil rights. We, as disabled people, should have the right to be as socially acceptable as we want to be. After all the pain I've had, I think it's up to me how I live.

Disabled people must now admit that if the experience of disability means that we have a lot in common, we are also different. It's like being in a club that no one really wanted to join, with people that we wouldn't normally want to be with. Yet here we are, in the club, all working together. That's one of the fantastic things about being disabled - having a common bond with people you wouldn't normally have any connection with. The fight we have now is to remember our differences and be proud of them.

We must start to fight to be recognised as people first, and disabled second. We must be as tolerant of each other as we ask society to be of us, and we must start to makesociety realise that we are all different. Tanni Grey-Thompson, the Paralympics champion wheelchair-sprinter, is a friend of mine and I think she's great, but I wouldn't wheel as far as she does before breakfast if my life depended on it. I know she hears my tales of three-day, no-sleep, full-on partying and winces at the horror of it all. You see, we've fought for our right to be integrated and we are gradually winning. Now we can fight for our right to be seen as individuals, for our right to be as conformist or non-conformist as we want to be.

To paraphrase the words of the Beastie Boys, "We wanna fight for our right to PARTY!" Or we might want to stay in and watch Corrie with a nice cup of tea. Either way, we should have the right to do it.

mail@scarletmessiah.com

The writer is a journalist, musician and broadcaster

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