Desire and Disability: A Complicated Coupling
It’s 1996 and Mark heads to the photocopier with his daily sense of unease, not connected to work itself (his head is lost in the latest Pixies record), but rather the ghoulish figure he always finds catching a glimpse of him through the partitions. No matter what time he makes the trip, there she is, sitting in her wheelchair, a blanket sometimes covering alarmingly thin legs. Stained clothes failing to mask poor hygiene. Visibly more perturbed than usual, a colleague solves the mystery for him. “Why do you think she’s here? She fancies you.”
Shocked, Mark stands in shamed disbelief. It had never crossed his mind. Desires like that are only meant for the able bodied, like the beautiful lady at reception, who, if only he were a shade more handsome, a tad wittier, might flirt with him as she did with everyone else.
Twenty years on, Western society boasts record numbers of disabled people in higher education, anti-discrimination acts, lauded Paralympians and a whole host of progressive measures. As a wheelchair user in my 20s who lives with cerebral palsy, I have benefited from these advancements more than most. Yet disability and desirability remains a taboo coupling. Only five per cent of people have ever been on a date with, or asked out, a disabled person. Not that surprising, considering that 67 per cent of able-bodied people admitted to feeling awkward around disabled people to the extent that they panic, or even avoid contact altogether.
The cultural disconnect is clear when Channel 4, the Paralympic broadcaster, proudly promotes the athletes as “Superhuman”, but also commissions a voyeuristic dating show on disabled couples called The Undateables.
So, in this age of paradox around disability, how do disabled people juggle their internal desires for love, affection and yes, even sex, with external perceptions of desirability that actively ignore their existence and have remained unchanged for decades?
Finding any semblance of balance is difficult, especially for disabled people growing up, as the two interrelate and feed off each other. David, who also has cerebral palsy, explained to me that disability can “feel like a horrible big word” – a poisoned chalice of stereotypes borne from the lack of awareness, exposure and visibility of disability within society.
“As a disabled person, you don't get a lot of help growing in to your own skin. At school and college, less so university, you realise that you don’t fit in to any group. You ask why you don’t fit in. You have a hard time becoming confident with who you are and knowing you are an individual, a person,” he adds. “The disability, it’s there, but it’s only part of you – it’s wrapping itself around you, but there’s still a person there. I’m 27; only in the past two years have I become confident in who I am.”
Part of the reason for this, believes David, is that disability is far from mainstream. It remains a source of curiosity for many able-bodied people, piqued by shows like The Last Leg and Paralympic coverage, rather than a permanent, accepted feature of society.
“That’s a problem, you know,” he says, wryly. “If the culture won’t make something mainstream or acceptable, how are disabled people or people in general supposed to experience good and fulfilling lives, with all the usual desires? Everyone wants the simple things and love is part of that. We need to love someone other than our parents”.
But the pressures of false external stereotypes make this difficult, especially among able-bodied people, many of whom expressed a genuine sense of confusion and insecurity to me about dating a disabled person. One admitted, “I’d worry about doing/saying the wrong thing.” Another expressed concern about sexual attraction being sullied by potential care duties and thus becoming pathos.
These worries mean any sense of sexual desire relating to disability gets transformed into what the late comic and disability activist Stella Young described as ‘inspiration porn’ – the true legacy of the Paralympic Games.
This is something Lisa found out when, despite all the odds and social conditioning, she dated a man whom she found “extremely sexy”, who happened to have a prosthetic leg. Very early on in their relationship, once she had got past the initial surprise of his taking off his leg before sex, she realised how perceptions of disability bear no resemblance to reality.
“I think the biggest thing that relationship taught me was that disability is not about pity,” she says. “So often, disabled people are portrayed as ‘lesser’, or seen as something to be pitied or lamented. If you say that your boyfriend is in a wheelchair, people’s immediate reaction is often, ‘Oh my god, how absolutely awful and tragic; what a terrible, sad figure. How does he cope? He must be so brave!’ And that is so often not representative of the situation at all. For example, my ex and I spent a lot of time sending up the ‘I’m disabled, therefore I am so, so brave, look at me, being so brave and noble just for existing and getting up in the morning,’ stereotype. He didn’t feel he was especially brave or noble or deserved special praise just for living, although I definitely had a lot of pride and was seriously impressed by how well he coped with the challenges of his condition; he was just getting on with his life, the same way everyone else does. Of course, he has extra challenges and things to overcome and I’m not diminishing those struggles in any way, but to see disabled people as ‘other’ – and as awkward figures to be pitied or wondered about or kept at a distance – is just so unhelpful.”
These pressures can still manifest within an accepting relationship, but in unexpected ways. Lisa found the tables turned. Initially, she had worried how her boyfriend could conform to standard conventions of masculinity and how much their dynamic may be affected, but these concerns soon melted away. In their place rose his struggle to open up about his disability or display vulnerability, despite outward confidence.
“He would close himself off and not want to talk about things, or hint at some difficult self-esteem issue he had had thanks to always being stigmatised as a child and then refuse to talk about it anymore,” she remembers. Sex between the pair was not impeded by the disability, but in the longer term, Lisa felt “the lack of communication” pushed them apart. And even if these issues were not necessarily directly related to the disability, they often felt like a by-product of it.
I can relate to this sense of inadequacy. Yet to experience a truly long-term relationship, I have internalised a sense of unworthiness to such an extent that, during one particularly intense one-night stand at university, I actually asked the girl involved, “why are you doing this?” Of course, she told me in bemusement to “shut up” (for the best!), but as the night wore on, I felt more and more pressure. She seemed special: free, fun-loving and instantly at ease despite my disability, so I didn’t want to let the moment slip. Yet, at the very moment this flame so rare desired me and I desired her, I still couldn’t bring myself to desire myself. A far from healthy situation.
This need to prove my worth, both to myself and society runs desperately deep. So much so, that quite honestly, I have never imagined my future with a physically disabled partner. On the surface this may seem a stark, incendiary statement. But consider how a lack of exposure has limited my own perspective – I am nearly always the only wheelchair user at every bar I visit and certainly a lone exception in the workplace. This makes the chance of meeting any disabled woman, let alone someone I may fall for romantically, incredibly slight.
Yet I cannot claim this is something I actively search for. From youth, many people suggested or expected that I would find love with another disabled person. Two lepers in the dating world only fit for each other. Heck, even The Undateables, perhaps the only mainstream television show on the topic, presents only disabled people meeting each other. This self-limiting viewpoint feels sharply at odds with the able-bodied world I live in. I have never defined myself by disability, so why should I do so in love? I am worthy of the same affection as everyone else, including from an able-bodied person.
At least, that’s what I tell myself, even if I can’t ever quite believe, nor properly put it into practice. Does this make me a contradictory hypocrite? Possibly.
The solution to this struggle is neither impossible nor mysterious. It lies in acceptance, a challenge far from exclusive to disabled people. In the words of ground-breaking disabled media personality Mik Scarlet, who hosted shows on the BBC from his wheelchair in the 1980s: “The key is to see yourself as a good catch. It doesn't matter what society tells you, most people want to find love with someone who gets them, disabled or not.”
This is, however, much easier advice to give than follow in today’s superficial, social media-obsessed age. Mik laments this narrowed focus, but living a wild youth in 1980s London, when “punk had just happened” and barriers were being broken is in sharp contrast to today. Then, being ‘different’ from the norm felt like a genuine selling point.
“As long as you looked good, people didn’t see disability as a big deal. Parents got upset, but that just made the rebellious people I dated want me more!” he adds.
For some disabled young people today, the internet can be a double-edged sword. Laura felt a sense of self-loathing as a disabled teen, believing no man would ever find her attractive and as she puts it, “pick up the challenge” of a relationship with a disabled person.
“Society taught me I didn’t deserve to have the same wants as a ‘normal’ woman. I had no-one to look up to: there was no-one like me on television in the 2000s,” she says. “I just felt alone and that people like me just don’t live ‘normally’. As I could hide my disability online, I went through quite a destructive phase, using Tinder, texting and sexting as many people as possible in a bid to feel attractive and desirable”.
Despite the obvious dangers, Laura is adamant this gave her release and let her explore her sexuality. Eventually, she shifted tack and used the internet to find love, rather than lust, meeting her able-bodied boyfriend on an “app for geeks to chat to other geeks”, as she calls it.
“After a month of talking I opened up and told him all of my self-confidence issues. We started dating shortly after and over the next year he showed me love that I’d never been shown before; he saw me for me and somehow found me attractive. He showed me I was as worthy as a ‘normal’ person by actually treating me like one. Despite still needing to help me physically, he showed me that it doesn’t make me less attractive; everyone needs help, my need is just more obvious.”
Despite being generations apart, Mik echoes the same thoughts, particularly now he’s happily married: “My wife loves me, all of me,” he says bluntly. “That’s something disabled people don’t get told. It’s always in spite of our impairments, but real love includes them.”
This is true and a lesson we can all learn. The challenge is not only breaking down the stigma around disability for able-bodied people, but also encouraging disabled people to accept themselves – both spiritually and as part of society. For too long I have fought against my disability – taught to be ashamed of it. Dating a disabled person may be daunting, but it is far from impossible. Dating a person who cannot desire themselves? That is a different matter, disability or otherwise.
Photograph by By Morten Hammer of Street Art by Dolk