My friend Lana was 17, while I was 14. Both in wheelchairs, we were in hospital together with a rare childhood illness. She was ahead of the game because she had a boyfriend. I was curious – had she done it yet? Our bodies weren’t that happy with moving, so what position was good?
Lana would laugh. “You find your own way, it just happens with the right person!” She loaned me adult books – Fear of Flying, The Women’s Room, and Delta of Venus. I was shocked that they turned me on though I wished some of the stories had been about disabled girls. We weren’t expected to have sex let alone get horny and enjoy it. We were told no one would want us and it was better not to have expectations.
Quite simply, the disabled did not have sex. These voices were hard to challenge, even while I wanted to believe they were lies.
My next awakening was punk. The infamous Sex Pistols TV slot in 1976 opened up me up to rebellion. Though I was stuck at home in Slough, with a crappy wheelchair and couldn’t go out. I was determined. I would get my own place and have a sex life.
My next best friend was Tamsin. It took four hard years convincing social workers to let us live in our own flat in East London. We soon hooked up with other disabled people, demanding rights and ready to talk s-e-x.
I formed a band – Spiral Sky – and met BF One, who became my manager, with promises of fame and money. I fancied him rotten, even while scared of rejection. Those earlier voices nagged – I was an ugly disabled girl and no one would want me. I drew on my punk spirit. Before I knew it, he made a pass, the fireworks began and I married him two years later.
Through writing stories, poems and songs, interest grew in my work. I won an award and £500, presented by Terry Wogan, spent on a home recording kit and a new bondage dress.
Writing saucy stories, I spoke out about disabled people and sex. On my Spiral Sky LP, I sang Marriage of Inconvenience, ‘I’m told I’m not enough. Don’t I know it’s different for people such as us?’ exposing the prejudice shown about disabled people, sex and love.
Margaret Thatcher was in power at the time, and we hated her. My first punk poems were rants about the Tories. Disabled people didn’t have rights. There was no real social care. Even going on a date was difficult because steps were everywhere – I’d only been on a single date with BF One, and that was because he dragged my wheelchair up a step.
When we sadly divorced, I threw myself into the single life – just as the internet came along and disability sex briefly hit the mainstream. I was on a few TV programmes, one with award-winning actor Mat Fraser, another campaigner for disability sex. And I won an Erotic Oscar!
I enjoyed doing what non-disabled people take for granted, happy to notice my disabilities rarely mattered. My unique shape was adored and explored by “f*k buddies”. Each experience taught me to love and accept myself and I learned new boundaries of self-respect. These experiences were worth sharing, in the hope they might help other disabled people avoid old stereotypes that prevented them from leading a full life.
I won a creative arts bursary to self-publish my disability erotica. Desires was published in 2003 – fictional stories covering many aspects of disabled people’s relationships, their hopes and dreams, their fears and disappointments. It also features explicit sex scenes – because I never forgot the time I wished for something I could read and relate to in this way.
My publicist, Tony Cowell – brother of Simon – tried hard to get Desires out there but the world wasn’t ready. Channel Four’s Richard and Judy’s Book Club was tempted, but then decided it was too naughty.
Over the years I’ve worked hard to tell stories we don’t hear about disabled people, including our sexual experiences. Desires, as the e-book Desires Reborn, was reissued in 2012 – tying in with the Paralympics – and is still available.
I unexpectedly passed an audition to train with the famous Graeae Theatre Company. Next thing, I’m learning burlesque with well-known burlesque artist Jo King. Several sassy disabled women twirling those tassels! A confidence booster to this day in my work as a Spoken Word performer.
Lots has changed since I was a teenager, but this Tory government is much the same. Many rights, taken from us. They seem to hate the arts and creative people. This affects disabled people, how we see and express ourselves, which naturally sways our thoughts about relationships. But I hope younger disabled people find love and passion with fewer barriers.
The internet is a massive resource for sharing, even if it has a dark side. It’s surprising that disability sex still makes people nervous. Disabled writers like myself keep struggling to get into the mainstream with disabled characters, let alone ones who have sex. Change is slow.
We have award-winning actors, like my wonderful friend Liz Carr, and Bafta-nominated Ruth Madeley, smashing barriers with their talents. The more we’re allowed to tell our stories ourselves and be seen across the media in our variety, the more acceptable our sex lives will become.
Now I happily live by the seaside with a new partner, working hard on several secret writing commissions. If you want to know more about my many adventures, my memoir First in the World Somewhere is available – but hurry, books are selling fast.
I’m still a punk at heart and intend to grow old very disgracefully.