The Fundamental Right to Intimacy
Do disabled people have sex? Of course we do, writes Penny Pepper. Why are you so surprised?
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With the commercial grotesquerie of Valentine’s Day upon us, I want to stake my claim that I invented disability sex around 1994.
Others may dispute it, and I will acquiesce that it wasn’t only me or my intention exactly, when I worked with campaign charity Arthritis Care on a project that led to the publication of a booklet called ‘Our Bodies, Our Relationships’.
When writing this guide to all things sexual and disability – for the first time using entirely user-led research – I had no idea where this would take me and what a groundbreaker it would become.
The trajectory included actor and activist Liz Carr referring to me as Penny ‘Sexuality Booklet’ Pepper, and contributing to The Sexual Politics of Disability: Untold Desires. Headed up by Professor Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies, this took a sociological approach, and somehow I was the one who went hardcore – literally.
Ultimately, this background of work led to my successful Arts Council Innovate Award and the publication of my short story/explicit disability erotica collection Desires in 2003. There remain 50 copies of the softcover in my wardrobe and the revised 2012 ebook edition, Desires Reborn, remains available in all the usual places. There were Lovehoney blogs, spoken word burlesque, and even my Hemingway Shorts-winning story is a disability romance set in New York.
So at the very least, I feel I have my place to write about disability and sexuality with some gravitas, although my focus yearns towards the story; the powerful transmutation of life into fiction where I believe the magic of connection takes place. I’m not a guru or a therapist, I’m a storyteller.
My yearning continues even as publishers remain fearful, if prurient. The obsession with our sex lives continues, but in limited terms.
It’s not even personal and I don’t believe I have some disproportionate, raging libido – though it wouldn’t be wrong if I did – it’s more about the chasm of inequality when it comes to seeing our amorous stories told by us in ways we can relate to, which underpin that we are worthy of the rights to sexual expression. Passion. Intimacy and love.
My bleak, depressive teenage years add further weight to my claim because I also struggled on the lonely dark side. I learned about sex, the nuts and bolts, the barriers both literal and psychological, from disabled friends. But I knew nothing about relationships and was achingly shy. Conditioned to be passive as a disabled female, with no sense of self or identity, I fear many disabled people still experience similar in their search for love and connection.
Hypocrisy remains rife – after all, we do live under the clutch of those double-standard experts, the Tories. More than ever we are the scroungers, the greedy if not the culled (anyone have the Coronavirus statistics for disproportionate deaths among disabled people to hand?).
So many people outside of our community remain our experts and judges. The mixed blessing of the internet and social media platforms is that, while they allow easier connection for those able to afford accessible technology, as a wary dabbler myself on TikTok, Instagram and Twitter, I know the battles can be savage – hatred reaching new lows as it’s spewed towards disabled people.
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Many disabled influencers who push messages around sexuality are banned for sharing no more than the basic realities of daily life – from showing off the clothes they like to taking medication and kisses with partners. Sometimes they are attacked simply for sharing the news and progress of a pregnancy. I salute them all for their tenacity and commitment to demonstrating the disability experience in such a way and truly hope it leads to change. In the meantime, at least it gives disability adulthood a presence.
Those disabled people who have become TV darlings also have an important role to play in demonstrating our romantic normalities. And yet the role is a tricky one. From the disabled participants in Strictly Come Dancing to the increasing presence of disabled people popping up in everything from Countryfile and Pointless and the occasional cooking competition, we’ve never been so visible, and it’s a definite improvement to 30 years ago. Yet we creatives and writers must push to open the inaccessible door of drama and storytelling.
Recently I was a guest on the marvellous podcast Fumble, in an episode called ‘Disability and Sex with Penny Pepper’. I was transported back to 1994 once again. Whatever I’ve done regarding rights around disability sex and love, I have no regrets, even while the work goes on, because prejudice returns in a dispiriting, cyclical fashion. The questions I’m asked have seldom changed throughout this 29-year period. Do we have sex? Do we use sex workers – at least the men? Should the government pay for it, as they do in some European countries?
My response may begin with equality has to come first – let us find the perfect venue, the well-paid support workers to assist us, the date we can just take for granted (which includes a decent toilet). But do remember, outside of all those infuriating self-love memes, there is truth in cliché. Love and sexual expression are profound fundamental needs – and rights – for all human beings. Happy Valentine’s, everyone.