‘Swept under the carpet’: sex lives of Australians with a disability

It took some time for Peter*, a man with severe cerebral palsy, to gather the courage to ask his support worker to help him have sex with Amanda*. Amanda is also severely disabled and interested in having a sexual relationship, but was too embarrassed to ask for help. When Peter’s support worker said he would facilitate it by placing them in a bed together, the couple were able to experience sexual intimacy.

‘There are currently no standardised policies or guidelines that exist for facilitated sex,’ says Dr Russell Shuttleworth, senior lecturer at Deakin University’s Faculty of Health. Dr Shuttleworth is currently working with George Taleporos, manager of the Youth Disability Advocacy Service, to conduct research into facilitated sex support for people with a disability.

Peter and Amanda are just two of many whose rights to a sex life are ignored by policy makers, Dr Shuttleworth points out. He hopes that he can encourage a meaningful conversation with policy makers through his research and subsequent findings, because until now the sexual lives of people with a disability have been ‘swept under the carpet’.

According to Dr Shuttleworth, facilitated sex assistance from support workers can include: organising sex worker services, buying condoms, or physically placing people in a bed. These are often awkward and confronting things for the client and support worker to negotiate with each other. But because there is no set of guidelines for the sexual components of disability support work, it’s a grey area discussed on a case-by-case basis – and often only if the person makes a request and the support worker is willing to help.

Through his research, Dr Shuttleworth has found that people such as Peter, who’ve successfully had physical closeness facilitated, would like more help. ‘He would like more guidance because he doesn’t know what to do in terms of penetration,’ Dr Shuttleworth observes.

While his current research is focused on discussions with people with disability and the barriers to sex that they encounter, Dr Shuttleworth says he’d also like to get support workers’ perspectives. He has studied sexuality and disability for more than 20 years and has seen an ongoing stigma around facilitated sex. ‘Most agencies are not engaging with the issue to the depths that they should be,’ he explains.

According to Dr Shuttleworth, the taboo stems from the private nature of sexual lives. ‘Most people can explore their own sexuality,’ he says. ‘When they’re confronted with people who are not able to do these things, it’s uncomfortable to talk about the pragmatic components.’

He concludes that it’s not something that disability support workers are necessarily responsible for managing. ‘I don’t think people go into support work and expect to do these kinds of things. If someone doesn’t want to provide sexual assistance, they should not feel that they have to,’ Dr Shuttleworth says, adding that it’s important to implement education, training and policies. As long as it continues to go unaddressed, ‘There is still a risk of exploitation and legal repercussions for both people with a disability and support workers.’

Dr Shuttleworth is looking for Victorians who have a disability between 18 and 65 to participate in the study. For more information, email r.shuttleworth@deakin.edu.au or call 5227 8433.

Explore courses in disability and support at Deakin University or read more about the work of Dr Shuttleworth.

*Names have been changed