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Case study: sex and support?

In this video, Denise Beckwith and Tom Shakespeare describe different ways of supporting sex for people with disabilities across their life course.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. Supporting sex and intimacy.
DENISE BECKWITH: I’ve worked in the disability advocacy sector for 15 years. I’ve had lived experience of disability and also pursuing sexuality. And the interesting thing is that people don’t see sex as an element where people need help with. Your disability doesn’t disappear because you want to participate in sexual activity. It just doesn’t disappear. I wish it did. It would be quite miraculous. But it doesn’t. So people who need help getting ready to go to bed at night still need help to go to bed to participate in sexual activity. It’s not that they can’t make consent around participation in sexuality and sexual activities, but it just means they need help.
So viewing people with disability as people with disability who are asexual, which happens so much, or that they’re being viewed as promiscuous, or they’re being viewed as undersexed and they don’t want it– it’s one of the biggest barriers that we come across. Attitudinal issues when it comes to disability and sexuality is one of the biggest issues that we come across, because people see the disability and they get scared off by it. So you do experience discrimination. When you talk about sex and then you say– you put the word “sex” first, because that in itself strikes up this amazing thing. But when you then go, “and disability,” you see people go, “what?”
I remember this one time when I was talking to a dad– and I was talking about his son, who was nonverbal but able to consent and able to express his ideas– said, “I want to experience intimacy with a sex worker.” OK? And the dad said to me, “I don’t know why you’re doing this.” Because the dad managed his finances for him. His dad managed his finances. And so it was a really big issue. And I had to talk to him about– that he wanted to access some of his money for this appointment. And he had the money, but it was just– “I don’t know why you want to do this, because it’s like opening up a can of worms.
It’s not like he can reproduce.” And I’m going, “So how many kids have you got?” He’s going, “Two.” I said, “Well, you’ve had sex twice then.” And he goes, “No…” And I’m going, “Well, see, sex is more than about reproduction. It’s about connection. It’s about intimacy. It’s about touch that is non-necessity touch.” And people don’t make that connection often.
TOM SHAKESPEARE: We often hear that disabled people are asexual and the rest of it. That’s just nonsense. That’s just so silly. If you think about the entirety of disabled people, most disabled people are having sex, having relationships just like everybody else. So let’s start with that. Let’s just not think there’s a problem. And then we need to think, well, what are these different groups of disabled people? Some folks are born with disability, and sometimes they face barriers– particularly people with intellectual disability. And that’s usually to do with empowerment. It’s usually to do with knowledge, to do with other people’s attitudes, to do with the fact that their carers, parents, care homes, whatever, think, “Whoa, they shouldn’t have sex.”
So they need information. They need empowerment. They need some support and some protection, because they’re vulnerable to abuse. Then you have other people who are born with disability who don’t have intellectual or cognitive issues but they have physical or communication issues. Now a lot of us, and I’m in that category, have had relationships, sex, marriage, children, whatever, like everybody else. But some people face particular barriers. I think this is often when they have a complex disability, profound disability, and particularly communication problems, so it may be difficult for them to form relationships. The third group is people who become disabled, maybe a spinal cord injury or something like that. Now often they’ve been having sex.
So the question is, are they going to continue having sex? Sometimes their partnerships break up. Often they have new partnerships which might even be better. And so the question there is making sure that rehabilitation includes information about sex. That’s virtually the first question people think about when they come round after the anaesthetic. “Oh my God, am I ever going to have sex again?” So helping people understand, yes they can– they may have to have it differently, but it can still be good– that’s really important in rehabilitation. And then the fourth category of people is people who are disabled through ageing. And we have this idea that older people don’t have sex. Well, again, nonsense. Of course they do.
And we need to support them. We need to have sex-positive images. We need to be able to deal with any physical changes that happen with ageing. We need to confront this issue of people with dementia. And again, it’s questions of capacity and consent. But we need to have the conversation. Whichever group, whatever age, we need to have the conversation– not start from the idea that it’s a problem.
And of course, there are various resources we have to support people with their sex– sex education, sex therapy or surrogacy, sex work in jurisdictions which allow that, sexual facilitation, which means basically helping somebody prepare for or get into the sexual situation but not having sex with them, and then there are various forms of support and facilitation for people with physical and intellectual disability. So they– and of course, counselling and psychotherapy and so forth. So like everybody else, disabled people may need some input around the sexual issues.
Not all disabled people, not all of the time, but we need to make sure that we have services that are set up to meet those needs as and when they occur, to enable people to have the same sort of sexual intimacy, relationships, family that other people do, because disabled people– surprise, surprise– are like everybody else.
DENISE: People with disability sometimes see sex workers as an avenue to experience things and understand things so that they know how their bodies work so that they can then pursue relationships. As an advocate, I’m aware of people who have disability which impact on their social skill development. So I worked with a young man with autism. He was a teenager.
His dad called up. And he was a twin. And his twin had pursued– his twin was able-bodied. And his twin had pursued relationships and had experienced intimacy. And he saw what benefits that gave his brother. And they were twins. And he wanted to do the same things as his brother– experience intimacy. And he actually went and saw a sex worker and actually learned about appropriate sexual behaviour and how to approach a woman. And it developed his confidence. And it built upon his confidence to pursue relationships with other people. Discrimination within the service sector of the disability service sector is massive. I remember this one time– and it’s a lovely story.
This daughter rang up about her dad, who had been a sexual being throughout the course of his life. And he was in his 90s. And he had developed dementia. But she knew sexuality and sexual expression were a big part of his identity before the development of dementia. And he was wanting connection– and it’s only touch and intimacy. So I found a sex worker who was happy to go and see him in the aged care facility where he resided.
And the nursing unit manager, for all her love and kindness, actually left the door open a little bit, because what she actually wanted to do was get a few staff to go in there before– at the beginning of the appointment– because she wanted to see how they responded to a client actually having their sexual needs met. And some of them just walked away startled. And the sex worker was aware of this, because she said, I want my workers to realise that this is a part of an older person’s identity as well. And it can be and it should be explored. So she left the door ajar. And a few workers did come in.
And a few of them walked out aghast and went, “What’s going on in there?” “It can’t happen,” and all this stuff. But what that nursing unit manager wanted to do was show that this is part of a life continuum and that it should be considered. And if a person does express these wishes, that the environment in which a person lives, whether that be an aged care facility, their own home, or whatever, should be inclusive of this and allow for space for this exploration.

In this step we look at sex and disability and some issues around support.

There is significant stigma around people with disability and sex. In the above video, Denise Beckwith and Tom Shakespeare discuss some of the stereotypes around disabled people and sex, including that people with disabilities are asexual, over-sexual or just simply can’t have sex. As both Denise and Tom point out, people with disabilities can and do have sex. As we discussed last week, attitudinal barriers are the primary issue for people with disabilities in having sex.

Both Tom and Denise point out some supports which might be useful for disabled people. Being recognised as someone who can and will have sex is the first step towards receiving supports. For example, many disabled people do not receive adequate or appropriate sex education. Nor are their needs for sexual activity respected or taken into account. Tom and Denise suggest that supports to engage in sexual activities might include sexual therapy or surrogacy, access to sex workers or sexual facilitation.

Talking points

  • In the video, Tom Shakespeare repeats the phrase that people with disabilities have sex “like everybody else”. Why do you think he emphasises this? Are there any dangers in using a phrase like this?
  • Why do you think there are stigmas and misperceptions about disability and sex?
  • What mechanisms exist for supporting disabled people to experience sexual intimacy in your own local context?
  • How does this example help to illustrate how support needs might vary over the course of someone’s life?

This ends the Basics for Week 4. In the next step, we Expand our interests by examining the ways in which assistive technology can be used to support a good life for people with disabilities.

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Disability and a Good Life: Working with Disability

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