I knew early on that because I was disabled, sex was taboo. This realisation started in my teenage years, when staff in the medical institutions I found myself in bullied their young charges to toughen up, insisting we would never have sex. Thank goodness for the older girls with their copies of Cosmo, who shyly explained ways to masturbate, if your hands were a bit weak and stiff – and what was nice to touch if your sensations weren’t so good in the “usual” place. Once I tried sex with someone I adored, I found I liked it.
I wrote about the film Me Before You last week, and it made me think about that taboo around sex and disability. One of my many objections to the film is the utterly limp way it deals with sex: there’s a timidity in its approach to whether Will, the “hero”, can have any sexual desires and this adds to its general cartoony feel. Will has a spinal injury. He’s “dead” from the neck down. This is primarily movie-land speak. Those with a spinal injury can and do have satisfying sexual experience – including my own partner.
But I’m not here to do a sex guide for the prurient. Nor am I claiming all disabled people have phenomenal sex all the time. Who does for goodness sake?
Me Before You and its coy fudging of disability and sex comes in a long line of mixed messages about our sexual identities. TV in the UK is doing better these days, with strong disabled women featured in soaps and dramas – played by disabled actors. The money-driven behemoth film industry lags behind. Hollywood throws in the odd background wheelchair user, or someone with a learning difficulty, but it’s mostly about dying and loss all the way. The films Whose Life Is It Anyway? and Million Dollar Baby spring to mind.
The only counter-view recently is The Theory of Everything – despite Eddie Redmayne’s annoying “cripping-up”. The film features Redmayne as Stephen Hawking, joking about sex, and plainly enjoying the making of babies whenever possible well into the deterioration of his impairment.
What is vexing is that disability sexuality is always presented in the mainstream as an “issue”. This is not helped by the meagre presence of disabled people depicted in arrays of full-bodied, moody, fabulous and sinful relationships.
To be viewed as asexual – when it is not a choice – is not only exasperating, but offensive. For people who are newly disabled, or are younger, the pervasive misconceptions and messages of non-acceptance are truly challenging.
Our sex lives teeter continually on the edge of uncomfortable opinion. Often there remains a staggering ignorance. A very high-profile friend – a wheelchair user – told me she has been asked: “How did you get pregnant?” To which she answers dryly: “Sex with my husband.” A few years ago I was interviewed on radio with the actor Liz Carr, talking sex (again). The presenter announced that she found the idea of disability sexuality “outside her comfort zone”. What can I say to that?
Prevailing discussion on sexuality among disabled people tends to the broad and the satisfyingly contradictory – but there’s a strong disconnection between what we discuss and what fascinates the non-disabled. Even if the sense of taboo starts to lessen, we’re still left out of debates about sexual freedoms, and have been since the 60s. Instead our sex lives are discussed in terms of these “issues”: what it’s like to be non-disabled and have a disabled partner; what a disabled person might face if they want to have children. It’s even an “issue” if you want to go on a casual-sex rampage!
Overwhelmingly, disabled people experience discrimination by way of barriers and negative attitudes. This is as true of sexual adventure as it is of everything else. I never went on a date – meeting someone with whom I had a mutual attraction – until my late 30s. By which time I’d somehow married and divorced.
Why no dates? Because until very recently, neither buildings nor public transport were reliably accessible – the tube in London isn’t accessible to this day.
Wheelchair users such as me must confront our sexual pursuits head-on. Is the environment accessible? Is the room accessible? Is the bed accessible?
These barriers overlap and intersect across impairment groups – and frustration is high in knowing that these hurdles could be removed, or at least modified if the will were there.
Over the years that I’ve written about disability and sex, I have often felt that when we make it work, we make it work well. We have to communicate with our partners, we have to be creative in enjoying this most human of pleasures. And sometimes, because of this, I think we might do better, sexually, than many other people.
It’s simple really; for us the “issue” is primarily the attitude of others. And it goes beyond an acknowledgment that we have a right to sexual experience.
We know we do. But we fight, on many levels, for our experiences to be recognised within the broader body of human experience, to have our views genuinely represented in all their forms, and expressed by our own creatives across all art and popular culture – and always with a favourite mantra from our activist movements: nothing about us, without us.
As for those books and films we need, portraying disabled women in a strong sexual light … don’t worry. I’ve been working on them for years.
• Penny Pepper will be reading from her memoir, First in the World Somewhere, at Daisyfest 2016 on Thursday 9 July
