The love that dare not speak its name

KEVIN and Hannah like going into town together to do the shops and have a bite to eat. He loves her very much and buys her flowers and chocolates and takes her away for romantic weekends. They have sex every Saturday night – he’d like it more often, but she’s often tired from work during the week – and they don’t have to worry about contraception because she’s had her uterus removed.

They sound like your average child-free suburban couple; well, perhaps a bit happier than the average. But Kevin and Hannah have intellectual disabilities, so they live in a special accommodation house. This meant their romance had a rocky start under the stern gaze of staff charged with their care.

The first time they tried to sleep together, Kevin told La Trobe University researchers, “A staff member knocked on the door and found us together. She said, `Get into your own bed’. I didn’t like her much doin’ that, because we’re two adults and she should have let us do it.” Kevin and Hannah forced the issue: “We left one night and we had sex somewhere. When we came back they had a talk to us and they said, `You can move into a room together’.”

From Kevin’s point of view, he and Hannah were a modern-day Romeo and Juliet, with public servants playing the obstructive Montagues and Capulets. But the situation for carers is not so simple; they must try to balance the human rights to sexual expression of their clients with intellectual disabilities with the duty to protect them from hurt or danger. What if Kevin was coercing Hannah? What if one gave the other a venereal disease? Would their families be horrified to learn that their adult children with disabilities were having sex, and if so, whose moral values should prevail?
Kevin and Hannah’s story is one of 25 detailed sexual and life histories recorded in a report launched this week by the Minister for Human Services, Christine Campbell. The report, People with Intellectual Disabilities Living Safer Sexual Lives, was designed to follow up overseas research that found people with disabilities had much higher rates of sexual abuse and sexually transmitted diseases than others.

It said people with disabilities were often wrongly stereotyped either as eternal children who did not develop sexual feelings, or as potential risks to the community because they were unable to control themselves. One of the authors is Dr Kelley Johnson, research fellow with the Centre in Sex, Health and Society at La Trobe University. Johnson argues that carers’ anxieties leave them either denying sexuality is an issue, and therefore providing no education about it, or practising strict surveillance to keep it from being expressed.

She says lack of privacy forces disabled people to hide their sexual activity, lack of information leaves them having unsafe sex, and lack of education about their rights and the power dynamics of sexual encounters leaves them vulnerable to abuse.

The report tells of Hussein, who didn’t use condoms because the men with whom he had sex didn’t like them. When Neville was institutionalised, he was often sexually abused by male staff, but when he tried to form a relationship with a woman living in the institution he was severely punished. “He learned that abusive sexual relationships were condoned but
that other relationships were forbidden,” the report said. (The names of all the people interviewed were changed.)

Jennifer Evans is president of the Health and Community Services Union, which represents the staff of community residential units. She says decisions about how to deal with sexual matters vary from one unit to another. “I think it’s a matter of (a), recognising your own values and morals, and (b), working out how not to inflict them on the people you are working with. Some carers believe it is their role to be a moral caretaker as well. I don’t see that.”

Evans says, for example, that she disagrees with the department’s ruling that staff are not to facilitate brothel visits by clients: “Other carers would strongly disagree with me, but I believe I am there to facilitate that person’s integration into
the community in whatever way that needs to be done, whether it’s as a visit to a massage parlor or to a local coffee shop.”

But even Evans has been confronted with situations that have made her uneasy. One unit’s residents were all young people in their teens and early 20s who had grown up together in an institution. When they moved to a community residential unit they began sexually experimenting with each other: “Their relationships were almost what I would term (emotionally) incestuous…because they were all like siblings to each other.” She still offered them sex education and condoms.

One of the girls was later found having sex with her boyfriend on an oval in a park: “She considered that more private than her bedroom. If she brought the boyfriend home, then everybody in the house would know about him, but in the park, she felt that nobody knew her.” Evans does not accept the notion that some carers fail to deal with sex because it is too confronting: “I don’t think it should be any more uncomfortable than helping people with other aspects of life that we’re not normally confronted with, like assisting them in the toilet or the bath…I think it’s more to do with the fear that if something happened, staff will be responsible for whatever goes wrong. I have worked with staff who have a very protectionist kind of attitude towards residents and don’t allow them to make mistakes they might learn from.”

A complicating factor in protecting them from abuse is that sometimes fellow residents are sexual offenders. “One chap in particular was very predatory,” Evans said. “He actually wanted to go back to living in institutions, where he had been abused himself and then became an abuser, because living in the community curbed his behavior. He used to say, `I’d get the ones who can’t speak because then they can’t do anything about it’.” Evans said it was decided he was never to be allowed out without a staff member, and other residents’ bedroom doors were alarmed at night to keep them safe.

For Johnson, the most striking thing to emerge from the research was that the yearnings of people with disabilities are just like everyone else’s, even if their chances of fulfilling them are lower. “Most of the people in the group we talked to desperately wanted close, intimate, loving relationships with somebody else. And that was really difficult for them to find because of the ways their lives were constrained and because of the kind of rejection they experienced from the community.”

Kevin is determined to hold on to his Hannah. “The only one I want to spend all my life with is Hannah. I love her that much. I don’t want to lose her,” he told researchers.

“I’m hoping to marry Hannah one day. Yeah. Hoping to.”

Also see: Marriage, Love, Sex … Not a Disability

First published in The Age.