Title: Hidden Pleasures
Disabled people want intimate relationships likes everyone else. So why does society appear so anxious to ignore, deny or stereotype their sexuality? Helen McNutt reports.
A stranger approached Karen Shook in a supermarket last year. "He asked if I could still have sex because I was in a wheelchair," says Shook, laughing as she recalls the incident. "I told him 'Yes, as long as I put the brakes on.' Then he told me off for being rude!"
Elena, who is also disabled, laughs too as she recalls a recent encounter with a taxi driver. "As he drove me home, he just came out with: 'Well, you must be a lesbian. You can't fancy men because you're in a wheelchair.'"
People, as Shook points out, make curiously narrow assumptions when it comes to disabled people's sexuality - or non-sexuality as it is more commonly perceived.
Consciously or not, it appears our airbrushed society wants to assume that only the physically perfect should be getting laid. The general view is that disabled people don't have sex. As with elderly people and the underaged, we prefer to believe they're safely tucked up in bed alone.
"The mass view seems to be that people with disabilities are asexual, and whose only needs are to be washed and fed," says Dipa, who has a progressive mobility impairment. "People with disabilities are cared for as children - you're infantilised - and people don't want to see children as sexual beings."
When was the last time you saw a disabled couple have sex on TV, or a disabled person portrayed in the mainstream media as anything other than "brave" or "tragic"? Disabled sex is taboo, but denying its existence has never made it go away. Some argue that, by denying a sex life, we deny disabled people their full human rights.
Disabled people who want a sexual relationship are not just up against the perception that they don't have sex. There are practical issues. A couple need to meet first before they can have a relationship. Transport and access issues can deter disabled people from going out to socialise, as can poverty. Often, the institutional world around disabled people appears to be conspiring against them having sex and relationships. Ron, who is visually impaired, uses a specialist dating agency. "I've tried normal dating agencies and they won't accept disabled people," he claims.
For those disabled people who live in care institutions, lack of privacy can be a problem. Staff walk into bedrooms unannounced. Some Christian homes will allow only the residents' married partners to visit their bedrooms, and for disabled people living at home, relatives can be overprotective. For those who are cared for by their spouse, it can be difficult to maintain sexual mystique when their partner has to dress, bathe and take them to the toilet. The choice and control necessary to conduct a satisfying sexual relationship are not always present.
There is little in the way of easily accessible, specialist advice on sex and relationships for disabled people. At least two helplines have closed in the past couple of years - one, Regard, ceased when its lottery funding ran out, and a second, Spod, was wound up because of staff and money problems. More general helpline services are not always helpful.
Elena, who has cerebral palsy, tells of when she rang a national charity to discuss her relationship problems. The person who took her call also had cerebral palsy, but the advice was strangely unsympathetic. She says: "I was told I should be married and that I'd have to start IVF treatment immediately if I ever wanted children. I hung up feeling very depressed."
Simon Barnes was disabled by a spinal injury at 21. He had been sexually active for several years before the accident. "When you can no longer sow your seed, part of your masculinity is taken away," says Barnes. "But it doesn't stop your sexual urges."
He was lucky, he says. Initially he was confused about how to get sexual satisfaction. "It was 1984 and there was no psychological counselling like there is now." But he had a relationship with a nurse he met at the hospital, who, he says, "showed me the ropes".
"I realised that although part of my sexuality couldn't be expressed like it used to be, there was still a huge part that could. I was introduced to the joys of kissing, caressing and stroking, which many abled bodied men miss out on."
Others have not been so lucky, either because of their attitude, or lack of counselling. "Some men I met in hospital decided that they would never have another intimate relationship," says Barnes. "And 20 years on, I know they have stuck to that."
The Outsiders charity believes it is unique. It has members worldwide and is cited on the internet, in books and in resource packs. Its founder, Tuppy Owens, has been running Outsiders since 1979 and still doesn't know of anyone else who does what they do - which is to talk openly about sex and disability.
Its UK branches meet regularly to discuss relationship issues. It provides information and books and organises social events. There is also a website with a practical suggestions page that deals with issues ranging from "I'm pregnant and have a disability" to "I'm a transvestite and need a woman who understands".
Elena says Outsiders changed her life. "I rejoined the organisation this year after splitting up with my partner. I had absolutely no confidence left. Since April, I've been working in the Outsiders [north London] offices and I've done some modelling for their promotional postcards. I've got my confidence back and feel I'm becoming the person I want to be."
According to Owens, other disability organisations are nervous about sex for a range of reasons. "This year, I wrote to 32 charities to try to form alliances and not one wrote back with a definite yes," she says. "They're all very wary. I think they assume because we deal with sex we're suspicious."
Their concerns, she suspects, may well reflect a wariness of courting what might be seen as unwelcome publicity. But disability providers have to assess what sort of formal help and assistance should be provided. In the Netherlands, a state-funded provider, SAR, offers a prostitution service for disabled people. In the UK, the legal and moral climate makes that more difficult.
Leonard Cheshire, a major disability service provider, has a "personal relationships policy". Ann Smyth, the charity's quality and standards adviser, explains: "These are to ensure that disabled people who have relationships maintain them, and to work towards initiating relationships for disabled people who want a partner."
In practice, she says, " it could mean providing transport for a gay person to visit a gay club, or it could be the provision of a double bed for a couple who both live in an institution. It could even stretch to undressing a disabled person and physically putting them in a position to have sex - although I must stress that only the appropriate staff would undertake this." Plain speaking, she says, is necessary. "It's time to stop pretending disability and sex isn't there."
Leonard Cheshire publishes a resource pack that covers all aspects of relationships and sexuality, such as friendships, sex education, masturbation and the use of prostitutes. There are strict rules on the latter. A member of staff could dial the number of the prostitute if requested, or they could drive the user to the appointment. But the meeting could not be on Leonard Cheshire property and nor could the staff member accept a reward. Staff members who object on moral grounds can refuse to be involved.
Perhaps the most difficult impairment to reconcile with a healthy sex life is learning disability. Victoria McKenzie, a sex counsellor, says the big issue is consent. "Sexuality is a right, not a privilege," she says. "However, people with learning disabilities must understand that sex is a choice and it has consequences.
"A lot of these people, women in particular, are sexually abused. In the New York state where I worked for a not-for-profit agency, it was estimated by the district attorney's office that up to 90% of women with learning difficulties had been sexually abused by their 18th birthday.
"We created a tool to assess ability to give consent," explains McKenzie. "We wanted them to have the same rights to a sex life as anyone else, but we needed to know they weren't being exploited."
Most of the time, the process ended in advice on contraception or pregnancy. Occasionally, the relationship would go before a "human rights commitee". If abuse was detected, measures such as ensuring clients were not left alone together would be put in place.
Generally speaking though, sex and disability remains taboo. Owens says one way ahead is to educate carers "so that they're not protecting the disabled from having a good time".
Remembering to put the brakes on helps, too.