Sex and disability - British medical profession is finally discussing it

From The Times in the UK:

Dominic Webb, 45, fell from a multi-storey building 15 years ago, leaving him tetraplegic. He has no feeling or movement below his shoulders.

A year ago he was introduced to Sue Newsome, a tantric sex worker. By concentrating on the senses that Dominic does have, she has developed a sensual head massage. She uses her hands, breasts and hair, eye contact, incense sticks and music to give Dominic the nearest thing to a sexual experience that he can have.

“The touching, the embracing and the cuddles are things I don’t get from other people,” says Dominic. “I crave that. I have loving friends but English people don’t touch much.”

Jimmy O’Hare, 41, was born deaf and lost his sight as a child. Two years ago he was introduced to “Solitaire”, a striptease artist. She performs for him by spelling words with symbols on his hand, draping her hair over his face, blowing on him and dropping items of clothing into his lap. Jimmy communicates through a friend, who interprets using a form of sign language called Deafblind Manual.

“My life is better now that I have found Solitaire. She is really good at what she does and gentle,” he says. “I had never experienced a lady doing a dance for me before and it made me feel nice. I like to touch people, especially their hands, arms and face, but I know that some people don’t like to be touched by a stranger. Sometimes I get hurt by that. I can’t see, that’s why I want to touch.”

Tomorrow, Dominic and Jimmy will allow their intimate physical encounters with Sue and Solitaire respectively to be seen in front of a roomful of medics, academics, healthcare professionals, charity officials and other disabled people.

The demonstration will take place as part of a conference entitled “Disability: sex, relationships and pleasure”, which is being hosted by the Royal Society of Medicine in Central London. It aims to educate carers about the sexual needs of patients and to introduce disabled people to available support networks. It is backed by the Sexual Health and Disability Alliance (SHADA) and the Tender Loving Care Trust (TLC), which help to put disabled people in touch with appropriate sexual and therapeutic services, and offer confidential support and advice on sexual matters.

Tuppy Owens, the founder of the TLC, campaigns for the sexual needs of disabled people to be recognised by care workers. “Sex is right at the bottom of the list when it comes to their care requirements,” she says. “But they have a right to enjoy all elements of life just like everyone else. It is also important that they have access to sex workers because they don’t have the same opportunities as the average person to explore their bodies.

“I see a lot of women with cerebral palsy. Sex is painful for them because they can’t open their legs fully and they get spasms. But if they learn how to relax and experiment with different positions, they can overcome that. Having an excited boyfriend is not the best way to learn.”

The TLC has helped hundreds of people with disabilities ranging from loss of limb to wasting diseases to learning difficulties. It has 55 sex workers registered on its site, all of whom have been vetted by the trust’s staff. The patients pay for the services themselves, although many sex workers offer a concession to disabled clients who genuinely cannot afford what they offer.

“I speak to many frustrated men with Parkinson’s disease,” Owens continues. “In many cases the drugs they take cause hypersexuality [raised libido], so these are men in a continued state of arousal with no means or physical ability to relieve themselves. It is torturous for them.”

The Sexual Offences Act allows care workers to help disabled patients to book sex workers over the telephone, provided they do not become involved in the negotiation of fees. But there have been many reported cases of authorities stepping in to stop the practice.

“The problem is that many health professionals think it is illegal,” says Owens. “The TLC has had calls from carers who say that they have even considered giving in their notice out of frustration that they are unable to help patients seeking a sexual service that could make them happier.”

Many high-profile names have backed the TLC’s cause, including Lord Faulkner of Worcester, Baroness Miller of Chilthorne Domer and the philosopher and author A. C. Grayling, but no one has gone so far as to suggest that sex workers should be paid for by the NHS.

Belinda Brooks-Gordon is a psychologist and a Liberal Democrat county councillor in Cambridge. She has campaigned for the human rights of sex workers and, as an occasional wheelchair user, is familiar with some difficulties faced by the disabled. She does not think that hiring sex workers for the disabled under the NHS would be out of the question.

“Given that sex therapy is available on the NHS for men with penile dysfunction, for example, we could make a good case for saying that it should be provided,” she says. “At the very least the health service should explore all options available to help a patient in anguish. What about the young war veteran who has fought for his country and now has no legs, difficulty in finding a partner and can’t afford a prostitute? Or what about a man with Duchenne muscular dystrophy who is desperately saving for the first non-medical touch in his life?”

Andrew Rosetta is the author of Whatever She Wants: True Confessions of a Male Escort. In it he refers to several clients with disabilities. He says that most people have a skewed image of disabled people’s sexuality: “One of the things I learnt was that disabled people have the same desires as everyone else. They don’t necessarily fancy people with the same disabilities as them. Women want a toned male torso and men want a hot, skinny blonde, just like the rest of us.

“Working with disabled clients made me feel as if I had done an honest day’s work. I think I put them in touch with a part of humanity they hadn’t been in touch with. But many of them struggled to see me regularly because either they couldn’t afford it or they had to rely on a care worker to get them to wherever they needed to get to.”

For disabled people, the notion of a sexual encounter is not necessarily what others would understand by the term. Dominic, for instance, has sensation only in his head, neck and the tops of his shoulders. Sue, who grants him a price concession, says that is where her resourcefulness as a tantric sex worker comes in.

“It is often assumed that if someone can’t feel their sex organs they must have no sex drive,” she says. “But they still have yearnings like everyone else. I hope I can help people like Dominic to find a means to express themselves sexually and a way to receive pleasure in parts of their body where they can feel. Yes, it is about sexual pleasure — but the only way I can facilitate that is through sensual pleasure.”

It is possible for men with spinal cord injuries to have an erection and to have full intercourse. Both men and women who have no feeling in the lower body can contribute to conception and the women can bear children. But full intercourse comes with a health risk. Even though someone with a spinal cord injury may not feel the sensation physically, their nerve-endings will send a message to the brain that there is extreme stimulation or pain in an area of the body where the nerves are damaged, which can result in a dangerous medical condition known as autonomic dysreflexia. This manifests itself in hot flushes, raised blood pressure and headaches, and can be life-threatening.

The issues being raised at the London conference tomorrow do not just concern physical need. The TLC and SHADA also want to highlight the lack of opportunity for some disabled people to find a loving and affectionate relationship or to experience the fun of dating and flirting.

Dominic first gained a sense of that when he joined Outsiders, a social support network for people with disabilities: “I came across people of 30 or 40 years of age who had never kissed,” he says. “They were embarrassed about it. Sex and love are the last things people think about when they check that we are OK. We are reticent when it comes to sex in this country.”

Claims that health professionals ignore the sexual needs of disabled people arguably reflect a general taboo about sex and imperfection. In March this year there was much media debate after Lucy Baxter told a BBC television programme that she wanted to help her 21-year-old son Otto, who has Down’s syndrome, to lose his virginity. She said she would support him if he chose to visit a prostitute.

The fact that this made headlines suggests a perception of sex as something that only “perfect” people can enjoy.

This month Channel 4 begins its comedy series Cast-Offs, featuring six disabled actors. Each episode will be from the viewpoint of a different character and the series will attempt to tackle the taboos connected with disability, including sex.

The sex lives of disabled people have rarely been explored by the mainstream media, which many would see as a consequence of society’s preoccupation with perfect body image. When sex is associated with the elderly or overweight, with those who are physically scarred or who have, for instance, a speech impediment, many of us squirm in embarrassment. It seems that we would prefer to think of such people as asexual.

Professor A. C. Grayling argues that we should train ourselves to think differently. “Evolutionary reasons make us alarmed or repulsed by someone who looks out of the ordinary,” he says, “but when we reflect on this maturely, we realise there is no reason to be repelled.”

None of us likes to envisage a sexual encounter with someone who is not to our physical taste, which is why most of us choose to keep sex private. But for many disabled people that is not an option: they are obliged to rely on carers not just for physical help but for discreet assistance in securing them a private life.

“I am daunted by the thought of letting so many people see something so intimate,” admits Dominic. “But I want to help other people in my position to become aware that they do have a chance to have a sensual experience.”

“I grew up feeling that I was disgusting and grotesque,” says Alison Lapper.

“ There were people who told me that no one would ever fancy me because I was different; that I would never, ever have a child.

“Imagine what it’s like when you hit your teens and start feeling horny and having sexual desires but have no one to talk to. I didn’t have a boyfriend until I was 18 because I didn’t dare.

“People have always thought that disabled people are public property, that they don’t have feelings and you can say what you like. When I was 22, I was flying to South Africa on my own and the man sitting next to me, after taking about six hours to pluck up the courage, said to me: “Can you, er ... you know ... have sex?” I said: “Of course I can. Why, are you offering?” I was shocked. I would never go round inquiring if someone could have sex because they were gay, or from an ethnic minority, or from a different country. I find it unbelievable that people don’t understand how it works. Sex is sex, whatever body you’re in.

“When I was pregnant I went to see a friend at the pharmacy in Sussex where she worked. We were chatting away when two mature ladies said to her, right in front of me: “Do you think people like that should be allowed to have children?” People like that!

“There was a lot of negative publicity when Marc Quinn’s sculpture of me went up on the plinth in Trafalgar Square. People said: “What has she ever done?” They think that disability is ugly and no one wants to look at it. But my story did come out and I met people who said that it changed their minds completely.

“In a lot of my artwork I’m naked. Just because I’m different doesn’t mean that I’m grotesque. More and more people with disabilities are photographing themselves — it’s everyone else we need to convince.”