For people with a disability, a physical relationship can be almost impossible to achieve. But disability service providers are recognising everyone’s basic human right to be a sexual being, writes SUE HOBAN
He is tanned and strongly built with gentle brown eyes and a gaze that sometimes catches and holds the eye, hinting at deep thoughts being processed within. In common with most young men his age, ‘‘David’s’’ thoughts often drift to sex and he dreams about one day being able to pursue a sexual relationship. But, unlike most young men his age, David’s dreams are clouded by obstacles that sometimes seem insurmountable.
He is trapped, not only by a body that is incapable of functioning independently, but by a common stereotype – that people with severe disabilities are somehow not subject to the same needs or desires as everyone else, nor entitled to the same sexual expression.
In a society where sexual imagery is pervasive, sex is invariably portrayed in the context of beauty and physical perfection.
Sexuality and disability is a sensitive subject and one that disability service providers on the peninsula are now grapplingwith as they fulfil their responsibility to support their clients’ lifestyle choices fully, yet question just how far they can legally and ethically go to facilitate rights to exercise sexual choices.
The Spastic Centre’s senior learning and development officer Jill Maginnity, whose many responsibilities include guiding clients on human relationship issues and sexuality, holds a strong view that people with disabilities have the same sexual rights as everyone else.
‘‘Sexuality is such a core part of every human being,’’ she said. ‘‘It has a bearing on self-esteem and how we perceive ourselves in relation to others, so to have such a core part of our being not acknowledged can really be devastating.
Whether someone wants to explore it or not, it’s about having the right to explore it and being supported to do so.’’
Peter King, co-ordinator of the Spastic Centre’s Manly Community Access Service, is another strong advocate for greater acceptance in this area. ‘‘Being able to find love and building loving relationships is one of the fundamental journeys of our lives and this is no different for peoplewith disabilities,’’ he said. ‘‘Because of their physical condition, disabled people need our support and a deep understanding of the barriers they face.’’
Their views are echoed by Spastic Centre CEO Rob White. But there are still many barriers that stand in the way for people like David. One problem is that third or fourth parties may have to be involved if people cannot even undress themselves or get into bed without assistance. And that is where barriers like official policies can come into play.
White said while the Spastic Centre supported clients’ rights to sexual expression, it had a policy that staff could not help them overcome the physical limitations that could make this possible.
‘‘Some people may need assistance in order to express their sexuality due to their disability but our policy is that staff can’t assist people in any sexual activity,’’ he said. White said to deviate from that could ‘‘open up a Pandora’s box’’. ‘‘Years ago we attempted to devise policies to help people but we realised it becomes a minefield,’’ he said. ‘‘Legal advice and human resources advice and occupational health and safety advice all came back to the point that we will let them express sexuality in any way they want, but our staff can’t assist them. Based on the legal advice we had, there is no way around that.’’
This interpretation of the law means staff could not even phone on a client’s behalf to make an appointmentwith a sex worker, let alone provide the further help that may be needed in cases of severe disability to position a couple for sex.
That means options are extremely limited. Peter King said unless they had an understanding family member or friend prepared to help, one who wasn’t constrained by the same duty of care, they had no chance of being able to have sex. Because of poor motor function they may also be unable to masturbate.
This absolute reliance on others to fulfil every basic human need and the fact that no trusted person may be available to make it possible to satisfy sexual needs is a major source of grief and frustration for many clients referred to northern sydney sexual health counsellor Cate Latham.
‘‘My sense from clients with disabilities is that their life is about asking someone else for permission to do everything they do and when it comes to sexuality that means they have to disclose their most intimate thoughts to someone else,’’ she said. ‘‘They are faced with the real dilemma: ‘Is it safe for me to say to that person I am interested in having sex?’ ”
‘‘I THINK most people don’t realise what people with disabilities have to cope with day to day. Most don’t realise we have the same drives and desires as anyone else, or even that we have sex at all.
When I see stuff on TV sometimes I cry and I don’t know why. It all seems so hard. It’s very hard to express your sexuality when you’re strapped into an electric wheelchair. What Iwould really like is to be able to find a real girlfriend.
When I express these views I know they are going to be in the paper and when I think about that I don’t want them to be published because they are so revealing, but I realise they might help people understand, so I have gone ahead anyway.’’
– David, 25 (cerebral palsy)
‘‘That’s a huge risk to take because they could be rejected, they could be judged. There was a time when they could have even been punished for that.
‘‘To me this is an issue of equality and it’s about empathy for the human spirit, to have the same opportunities that you or I have. When you stop and think, this is so easy for me but it is so unattainable for so many other people.’’
Latham and Maginnity said while some people with disabilities were simply seeking sexual satisfaction, for others it was tied up with yearning for other things the rest of society took for granted.
‘‘When people say, ‘I want to have a boyfriend or girlfriend and I want to have sex’, many of them just want the relationship side, to come home to someone who is not a carer,’’ Maginnity said. ‘‘We have seen people with disabilities, when a sibling or friend gets married or has a baby, that can put them back into what we call the grieving process about having a disability, thinking, ‘That’s never going to happen to me, nobody’s ever going to love me’, and if you add to that community attitudes about disabled people and sexuality, the legal barriers and the physical barriers, you can imagine how that would feel for you in the same position.’’
Maginnity said one of the concerns for organisations that stopped staff helping clients in this aspect of their lives was the issue of consent and the need for absolute certainty that both parties were informed and consenting.
But the issue of consent takes on an added dimension when the people involved have an intellectual disability. Whereas in the not-so-distant past many of these people were routinely sterilised or given medication to suppress their libido, there was now growing acceptance that they, too, had a right to sexual fulfilment.
Latham said in these circumstances education, safety and teaching appropriate expressions of sexuality were paramount. This is certainly the position taken by local organisations Sunnyfield and House With No Steps, that serve a predominantly intellectually disabled client base.
‘‘Sexual identity is an important part of anyone’s identity and when we provide services to peoplewe acknowledge that and support them to express that,’’ said Housewith No Steps CEO Andrew Richardson.
‘‘It is not up to us to live their lives for them and tell them what they should or shouldn’t do. Our job is to provide services to them, to inform them, support them and to help them make good decisions across a whole range of life experiences, including sexual relationships.’’
He said it came back to what was termed ‘dignity of risk’’. ‘‘We have a duty of care to all people who use our services but the concept of dignity of risk says that ultimately if they are well informed, if they have been empowered with information, then we have to let them take risks and there is great personal dignity in that freedom.’’
Mathew Bowden, deputy director of national advocacy organisation People
With Disabilities, said it was in the realm of intellectual disability that society’s misconceptions could be most pronounced. He said people with intellectual disabilities were often perceived to be oversexed and dangerous, unable to control sexual urges or, conversely, were considered eternally child-like and devoid of adult sexual desires.
He said in the past this had led to their exclusion from appropriate sex education, which had made them even more vulnerable. ‘‘We still see a lack of education and information being provided in accessible ways,’’ he said. ‘‘Information is power. Information can empower someone to say ‘yes’ to sex but also to say ‘no’ to sex and to be able to report things.’’ Bowden said although attitudes towards disability had progressed from the days when women with disabilities were commonly sterilised, the work of his advocacy service indicated regulations put in place to control thiswere still being flouted.
‘‘We are still hearing reports of men with intellectual disability being chemically castrated andwe still have reports of sterilisation of women without authority or legal consent, so there are still some very serious problems we need to address,’’ he said.