Marriage, love, sex … not a disability

Sarah has sworn off men since she became a single mother. Tom uses massage parlors because he doesn’t know how to meet women. Luigi, who prefers girls, believes that toilets are the place where sex happens because that’s where men ask him for it. Alicia has been happily married for five years.

All of these people have intellectual disabilities. Their stories are told in a report to be released today that concludes that community attitudes leave many intellectually disabled people vulnerable to rape, forced to lead secret sexual lives and practising unsafe sex.

The report, People with Disabilities Living Safer Sexual Lives, contains the detailed histories of 25people interviewed by La Trobe University’s Australian Research Centre in Sex, Health and Society.

Researcher Kelley Johnson said the project was partly in response to British findings that about 70per cent of women with an intellectual disability had experienced sexual abuse, and that both men and women in this group had a higher than average rate of sexually transmitted diseases, including HIV/AIDS.

Of the 25 people interviewed for this study, 18 (11men and seven women) reported sexual abuse. This occurred while they were in institutions, in independent or supported living in the community, or while they were living with their families.

Many still had active sexual lives and wanted a long-term relationship. Some had found partners and had children; one woman was lesbian and one man was gay.

Dr Johnson said the understandable anxieties of carers and families of disabled people often led them to deny sexuality was an issue or to try to prevent sexual activity. This violated human rights and drove the behavior underground.

“That doesn’t just happen to people with disabilities; it happens to the young and to the elderly, too,” she said. “People who have been married for 50years are often separated if they have to enter nursing homes.

“But for people with disabilities, the surveillance is life-long. Service providers and families are very concerned about safety and protection, which is of course legitimate. But the problem is the way it is often managed; people didn’t let them have information for fear it might lead to experimentation, or sometimes disabled people were just told, `This is not part of your life.”‘

Some disabled women were forbidden sex because of concerns about pregnancy, Dr Johnson said. “Some of them said, `Well, my mum didn’t want to have to raise another child and she thought she would (if I had sex),’ or `Mum thought if I had a child it would be like me.”‘

Janice Slattery and Amanda Hiscoe, who both have an intellectual disability, were members of the reference group advising researchers (they were not among those interviewed for the study). Mrs Slattery agreed that carers have to learn that “people do have their own freedom as well as being protected. There’s too much protection. They don’t get the correct information to protect them from sex, and they have to learn the hard way and that can be scary for them.”

Mrs Hiscoe said she hoped the project would force the rest of the community to take off “the horse’s glasses” (blinkers) they wear when looking at people with disabilities and realise “they deserve the same respect and same dignity and same rights
as being the very so-called normal people”.

The best outcome, said Mrs Slattery, who has been married for 15years, would be for a more open approach to “give other people with disabilities the opportunity to achieve what we’ve achieved; a happy marriage”.

The study recommended that services for disabled people develop policies in human relationships and sexuality, and that professional carers, families and people with disabilities be offered education about the issues.

The report was funded by the Victorian Health Promotion Foundation and will be launched today by the Minister for Human Services, Christine Campbell.

Also see: The Love That Dare Not Speak Its Name