Sex matters: Relationships and disabilities

Lucy Baxter's appeal for a woman to have sex with her son, who has Down's syndrome, shone a light on one of society's last taboos. Nina Lakhani reports
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The Independent Online

"I want to have sex. That's my problem: I want to have sex, but I'm still a virgin." Ben Pelham, from Colchester in Essex, is 20. He is charming, funny, affectionate. He's got a neat line in cheek – he tries to chat me up, says he "doesn't mind being a toyboy". He has a pretty girlfriend called Kelly. So what is Ben's problem?

He is one of 60,000 people in the country with Down's syndrome. And, just like Otto Baxter, 21, whose mother last week sparked controversy when she appealed publicly for a woman to have sex with him, when it comes to relationships, it can be a problem, a real source of misery.

Ben's mother, Charlotte Morse, tries to reassure him as he laments his failed efforts. "It will happen. You're working on it. It will happen." But he looks none too convinced.

Down's syndrome may affect cognitive function and physical appearance, but it has no impact on libido. And so Ben is like any other young man – full of hormones, with the same desires and physical needs as everyone else.

His mother speaks openly to him about the difficulties – and was glad to see Lucy Baxter make her plea for Otto. Ms Baxter shocked many when she said she was prepared to pay for a prostitute for him, but, Ms Morse says, she raised an important issue.

Until relatively recently, disabled people were hidden away in care homes, and socialised only with their families or other disabled people. That has changed, and youngsters like Ben and Otto have grown up in mainstream schools and colleges; they have personal assistants to help them navigate through life, and many have jobs.

They have dreams and expectations like everyone else – and that includes a desire for love, sex and relationships. But this last part makes a lot of people uncomfortable. Many still regard people with learning disabilities as almost childlike, in need of protection, rather than as sexual beings with the same needs and desires as everyone else.

Ben, who works part-time in McDonald's, has been dating Kelly for two years. They met at college on a life skills course; Kelly also has Down's syndrome. For the first few months of their relationship they were always chaperoned everywhere by Ben's personal assistant and Kelly's brother. Now they spend Wednesday evenings together alone and enjoy going to the cinema, out for dinner, or just hanging out. But they have never spent the night together.

Ben explains: "Kelly doesn't want to have sex yet; she's not ready. I love Kelly but I don't like still being a virgin. It really upsets me." They have talked about getting engaged. Ben would like to get a place of his own first and then ask Kelly to move in with him. Eventually, they want to get married and have children.

In the meantime, Ben uses pornographic magazines. His mother says: "People with Down's syndrome have fewer inhibitions, so I knew it was really important that I talked to Ben about masturbation from a young age. I used to buy him girlie magazines when he was younger, which was really embarrassing, but now he buys his own. I had to teach him that masturbation is a normal but private activity for the bedroom. His best friend at the time also had Down's syndrome but his mum didn't think sex or masturbation or magazines were appropriate, so she stopped him being friends with Ben. It was shocking."

Research carried out in Northern Ireland by the Family Planning Association found two-thirds of people with learning disabilities want to know more about sex and relationships. The FPA runs a community project that teaches people with learning disabilities – and their families and carers – about the issue.

Audrey Simpson, director of the FPA in Northern Ireland, said: "Many parents find it very difficult to come to terms with their children developing sexuality, because people with learning disabilities are much more vulnerable. But they have a libido and are sexual beings like everyone else, so we give them the information they need. This has to be delivered in a much more explicit and graphic way than usual. It's great that this issue is out there because the more we talk about it, the more it breaks down the silence and dispels the ignorance surrounding people with learning disabilities and sexuality."

There are 1.5 million people with a learning disability in the UK. According to the charity Mencap, it is much more difficult for people with learning disabilities to meet potential partners because they are often reliant on the attitudes of their carers. When relationships exist, they usually involve another person with a learning disability. Ms Baxter is adamant that Otto should be able to find a girlfriend who doesn't have a disability, but Ben's mother believes this is unrealistic.

Before Ben met Kelly, his mother had considered paying for a prostitute as an 18th birthday present. Ms Morse said: "I knew a man in France with Down's syndrome who was in his 40s and severely disabled. But his family understood that he had needs and would pay for him to visit a prostitute once a month. When I'd see Ben getting upset about sex, I thought seriously about it. But in the end, it wasn't right for Ben; he would have fallen in love with the woman, I'm sure."

Mark Goldring, chief executive of Mencap, said: "As recently as 10 years ago, the idea of two people with learning disabilities having a relationship was considered abnormal. Many in society still believe that disabled people have different thresholds of pleasure and pain. It is therefore much harder for a person with a learning disability to meet their needs in conventional ways. If going to a prostitute helps Otto to do this, who are we to judge?"

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