Sex and the disabled: why are the able-bodied so coy?

There is a telling scene in The Theory Of Everything, the Oscar-nominated biopic about Professor Stephen Hawking who was diagnosed with a form of motor neurone disease at the age of 21. The young Hawking, brilliantly played by Eddie Redmayne, is being carried up a flight of steps in Cambridge, by a friend who reacts with surprise when he learns that Hawking’s wife Jane is pregnant. He asks him if he is able to achieve an erection.

I confess that until that point, I’d been wondering exactly this, too. I have no doubt that it was a deliberate strategy on the part of the director to include this scene. And as I left the cinema, I heard several people talking about it: they had also assumed Hawking was unable to have sex.

Hearing other people verbalise my thoughts made me wince. Was that really the most startling thing about Hawking’s life? Of course not. But at the end of the film no one was discussing whether the laws governing quantum mechanics and relativity can ever be reconciled, or pondering the nature of the origin of the universe, or even how on earth his wife managed to bring up three small children while caring for a profoundly disabled husband. Instead, it was how his disease affected his bedroom performance.

Let’s be honest: the sex lives of other people fascinate us. They keep the red tops in business and the curtains twitching. If the individuals involved are rich or famous (preferably both), the titillation value is even greater. But the sex lives of the disabled - how do we really feel about them? A new book, Supporting Disabled People with their Sexual Lives by Dr Tuppy Owens, aims to tackle this challenging area by providing carers with advice on how to broach the subject of sex with those they care for. There is no doubt that such advice is needed but is it enough when societal attitudes deny the disabled their sexuality, preferring to view them as asexual?

Many disabled people, especially those with profound mental and physical impairment, remain suspended in childhood, infantilised by those around them. The reasons are complex and not always helped by parents, usually the main carers, who still view their grown up son or daughter as a child. I’ve seen men in their late teens and early twenties surrounded by cuddly toys in a bedroom with a cartoon character duvet cover.

Those whose disability may be less serious are victims too, albeit in a different way. Ask any person in a wheelchair and they will tell you that whether or not they have sex is the number one question they are asked, often by complete strangers. People who barely even know their names feel perfectly at liberty to enquire about their prowess between the sheets over a glass of prosecco at a party.

This is the paradox that the disabled face when it comes to their sexuality. We are only too willing to provide help to ensure the disabled make independent and informed choices about their finances, their healthcare or employment.But when confronted with the practicalities of actually supporting them in their sex lives, we suddenly become terribly coy and prudish.

Stephen Hawking enjoyed sex as part of a loving, committed relationships. But many with disabilities are not so fortunate. When is this ever acknowledged, let alone discussed? Sex is a fundamental part of many people’s lives, yet if you are disabled, it’s too often ignored. When I worked in an access team for people with physical and learning disabilities. I was routinely asked by disabled young men about prostitutes and, at least initially, I balked. Yet I would happily talk to them about every other aspect of their disability and how it affected their lives. Sex isn’t the be all and end all, but if you’re disabled, it’s only fair that it’s at least seen as something that might be important to you, rather than just something to be asked about at a party to satisfy the prurient curiosity of others.

Reuters

I’ve noticed a recent trend when talking about the NHS and I want it to stop; blaming patients for its problems. Sometimes it’s subtle. Politicians, senior NHS figures and hospital managers routinely use the term ''bed blockers’’, for example, as though patients are obstinately sitting in hospital beds, refusing to move out of sheer spite. It’s actually the patients that are being blocked by failures in social service provision. Similarly, the mounting pressures on the NHS are being blamed on the ageing population, as though a cohort of geriatrics has suddenly been parachuted in taking everyone by surprise. No, we’ve known the population is ageing for a generation or more so it’s not the fault of the elderly but of politicians who failed to prepare for this.

Sometimes, however, it’s more obvious and gratuitous. This has been particularly evident in the A&E crisis, which is blamed on too many patients attending, often without good enough reason. It’s true that people do go to A&E for daft reasons. But last week Dr Cliff Mann, the President of the College of Emergency Medicine, disclosed that of the extra 450,000 patients attending A&E departments in the last year, 95 per cent had been told to do so by the NHS 111 telephone service.

This rings true with anyone who has been in A&E and heard countless patients sheepishly says that they were sorry to waste the staff’s time but they’d been told to come after speaking to 111. The service is next to useless as the people dealing with the calls seem so wary and over cautious – presumably out of a fear of litigation – that they direct everyone to hospital. Yet it’s the patients that get the blame. Those who run the NHS should remember that the health service was set up to serve patients, not to simply provide statistics for their graphs and pie charts.

The idea that we might be able to detect and therefore intervene in a disease, altering its trajectory and saving lives is fundamental to medical practise. That we might be able to do this in otherwise perfectly healthy people with no symptoms is what underpins the notion of screening. There is something profoundly reassuring in the thought that we can screen for a disease. Yet, despite it being popular with both the public and doctors, it’s becoming increasingly apparent that the benefits of screening do not come without costs. In fact, some of those costs may outweigh the benefits and indeed, some of those benefits may have been overestimated anyway. A major study published last week in the Journal of Epidemiology found that two thirds of screening tests did not actually save lives. While it did find benefit from some screening – such as breast mammograms – it showed no benefit for lung, prostate, oral or ovarian cancer screening and no lives saved through breast self-examination. It’s also true that some tests risk over-diagnosis, with healthy people undergoing unnecessary treatment as a result. Could it be that in our search to find tests that offer reassurance, we have actually done more harm than good?

Email max.pemberton@telegraph.co.uk Follow Max on Twitter @MAXPEMBERTON