Marie Vakakis: [00:00:00] A look, sex and disability. Two words that many people still find hard to put together even in the same sentence. We talk about independence, mobility, even jobs. But pleasure, desire, intimacy. They often get left out. I’ve invited Sexologist, Casey Payne, to join me for this conversation and the first time I started thinking about this was when I was at a training and there was a urologist talking about supporting someone post prostate cancer and they had a sexologist there with them talking about some of the different sex toys and different ways that they can adapt.

To having a fulfilling sex life. And most people in the room were really taken aback because probably like [00:01:00] myself and many others, they had this idea of sex was penis in vagina. And so if you can’t do that, then that’s it. And so there was an entire workshop just on adapting. Different sex toys and different equipment to allow people to have a fulfilling sex life.

And I thought that’s actually really cool. So I was really excited to have Casey join me to talk all things sex and disability. Welcome to the show, Casey.

Casey: Thank you for having me. I’m excited to be here.

Marie Vakakis: What do we get wrong when we talk about sex and disability? I mean, sex in general. We’re very awkward and uncomfortable about it, and we’ve done many episodes on that, uh, for this complex life podcast. What do we get wrong? What do you see? What do you hear?

Casey: I think, like you mentioned, like that it’s been so ingrained in us that the only sex that we can have is penis and vagina sex and, and nothing else counts as sex. And I think that’s where we mostly go wrong is [00:02:00] that sex isn’t just intercourse, it’s, it’s. Any part of it. Emotional connection, physical connection that we have in an intimate space with either ourselves or our partner.

And it’s not just all about the orgasms really.

Marie Vakakis: How did you, I mean, I don’t even know how to start. I mean, I wanna know where, how you got into this, but I wanna pop that aside. Maybe why is this so radical when it comes to disability? What, what are we mis misunderstanding?

Casey: Yeah, so I think because disability, first of all is taboo, sex is taboo. So you know, together, it’s just mind boggling for a lot of people, particularly where there’s disability and any sort of care needs, but especially high care needs. So, because there’s such a focus on just, um. Everyday care needs that sexuality isn’t really any sort of part of that role.

[00:03:00] I guess it’s, it’s not really well known that people with disabilities still have a sexuality and they still want to explore it. So I think a lot of it is awareness that there isn’t enough awareness that everyone has a sexuality no matter how your body works or your brain works.

Marie Vakakis: When we think about the social model of disability, and for those listening, it’s, it’s around how the environment. Allows someone to move around freely in, in the simplest of forms. One of the examples that comes to mind is, let’s say ramps. If you’re putting ramps in, you allow four wheelchair users to access certain buildings or certain areas, and also people with strollers, people with, um, mobility, scooters, maybe someone willing a trolley of resources so other people get to access it.

So as you’re talking, I’m thinking about. There are some people who benefit from these conversations but don’t consider a, they have a disability. So I’m thinking about some of the couples I work with when the female partner might have some birth, birth trauma [00:04:00] or have something like Vaginismus and them and their partner, I dunno what to do next, because they still had this maybe inflexible or rigid understanding of what sex was, and that’s it.

H how do you work with couples like that?

Casey: I think there’s a lot of education that has to happen, and I think as well, like schema work. So we’re looking at what, what did you grow up thinking that sex was? What were you taught? And I guess really zooming in on that and seeing where we can make some adjustments to how they view sex and what the goal is of sex for them.

And then I guess putting in some little homework type. Situations for them to go home and practice with. So it’s slowly evolving over the course of the therapy.

Marie Vakakis: Yeah, I think that’s really important. I get people to even start to define what it means, and they’ve never thought of it. They thought everyone has the same definition. Yeah.[00:05:00] 

Casey: Yeah, absolutely. That is so common.

Marie Vakakis: What are a couple of questions? If people are listening and they’re thinking, oh, I might talk to my partner about this afterwards. What are a couple of questions that they could start with?

Casey: I think a good starting place is finding out their definition of sex. Is it just intercourse? Does it include foreplay? Is it communication? And I guess starting there so that they know what each other is expecting before you move into accommodating for each other.

Marie Vakakis: Okay, so some people might have some fun conversations after today.

Casey: Yeah, I hope so.

Marie Vakakis: How do we move past this idea that sex is just for. Able-bodied people and maybe even adding to that, people whose bodies look a certain way. I know with different body image issues, people sometimes think sex is just for someone who [00:06:00] looks maybe tall and thin or athletic, like they even have particular, um, I guess images of the kinds of people, the kinds of bodies that are able to have sex with, whether there’s, whether there’s, they’re able bodied or disabled.

Casey: Absolutely. Yeah. And I think the media plays a big role in that, in setting up false expectations of what you need to look like in order to have sex. And so I think part of that is, again, around education so that we can all learn that everybody’s entitled, every adult is entitled to feel pleasure through sex.

And what that looks like can be different for everyone. And I feel like it’s not common that. Everyone needs to enjoy it. Like especially in partnerships, it can be often one sided and it’s really important that both people are enjoying it. And I always talk about rules when I work with clients around, um, the three rules of when you’re having sex is that there [00:07:00] needs to be ongoing consent.

So we talk about what that looks like and what that feels like, and then, um, everyone has to be enjoying it. If it’s only one person enjoying it, then it’s not fun for everyone and there’s no point in doing it. And then the third one is that you’re in a private space because that’s another, um, big thing as well is that we need to be taught that sex happens for adults in private spaces, not out in the community as well.

Marie Vakakis: When you say everyone has to enjoy it, I find that one an interesting thing with some of my families and couples, or couples more than families. Families don’t tend to talk that sex,

Casey: Yeah.

Marie Vakakis: and some people are happy to make their partner happy and they can send to that and they find some pleasure in doing something nice for their partner.

But perhaps their body doesn’t move in a certain way, or there might be some things that they don’t feel comfortable doing but are happy to participate in, and it challenges that a little bit. How do you help people understand the difference between fun and enjoyable? Doesn’t [00:08:00] necessarily mean in that experience.

I have to have the exact same pleasure, if that’s okay with me. And we’ve talked about it.

Casey: Yeah, absolutely. And I think it is that communication that you need is that it’s, you’re okay with this. You’re consenting to this thing happening, but right now you’re not going to like orgasm because of it. And with a lot of couples in particular, orgasm is the goal. And so I feel like having that open communication of, um, that we have different standards of the outcome of this sex that we’re about to have.

Marie Vakakis: How do we make sure we’re not then buying into the orgasm gap? Because it is seen as the goal for people with penises.

Casey: Yes, a hundred percent. And I think that that is such a big question because we are so culturally like taught that that is. That sex is male centered and orgasm oriented. [00:09:00] So I think again, it’s around the communication and the education that women’s pleasure is just as valid as men’s pleasure.

Marie Vakakis: There is a book called The Orgasm Gap, isn’t there? I haven’t read it, but yes. On my to-do list. Um, as you are, as we’re kind of talking about this, I keep thinking about the use of of sex toys and other things that can help someone. And I see some people feel like somehow that’s a failure or they feel inadequate if things are brought into the bedroom.

How do you help people understand ways that they can use that? Sort of the impact that it might actually have on maybe their ego and how to open up a conversation around using different props or, or toys to facilitate sex. Whether you are able bodied or not, they can be really useful for some people.

Casey: Oh, absolutely they can. And I think it’s also important to know that for women in particular, [00:10:00] it’s. I can’t think of the number right off the top of my head right now, but it’s in the nineties, 90 percentage of women can’t actually orgasm with vaginal penetration alone. So it’s really important that we’re able to explore feelings around the clitoris and how that helps females reach orgasm, uh, more than just vaginal intercourse.

And so I, I guess like, I think you’ve used the word tool. It’s really important to say that it is a tool and the male, if we’re talking about heteronormative couples right now, the. Male penis isn’t the only tool that needs to be used. And I think opening up your mind to be able to bring in extra play things can make it more exciting and new as well, especially in, um, relationships where they’re having that problem of, um, not feeling fulfilled and feeling like there’s something more that they need in that.

Marie Vakakis: Are there any pop culture references or TV shows that maybe have been out recently that you think [00:11:00] do this well, that maybe have a scene that you’re like, oh my God, yes. Finally someone’s done a scene about this very weird thing that, or you know, that we thought was weird, but it’s finally represented somewhere.

Casey: Yeah. Oh, I, not off the top of my head, like I, I’m, I, when I do see it, I have a little cheer ’cause I’m like, yes, someone’s doing it right. But yeah, not off the top of my head at the moment.

Marie Vakakis: I have, um, for the, the TV show, sex education, the first two seasons of that I loved. And there is one scene and I think for teenagers to be able to see that is amazing. Where it’s Ollie and Lily are first, first getting together. Sorry, spoiler alert. And, um, Lily has Vaginismus and she can’t have, she’s got those little, um.

I’m not sure what they call that physios, pelvic physios used to help her get used to inserting something of different sizes and so they both agree [00:12:00] to lie there together, kiss and fool around and mutually masturbate. And that’s just how they connected. And I thought that is so great. ’cause some people might never have even thought that they can do what works for their body and still be around the other person and share that together.

And it’d be very fulfilling.

Casey: Yeah. And I’m glad you mentioned sex education ’cause it’s such a wonderful show. Even, even though it is based on teens, there are a lot of adult themes in it. And, um, there was conversations in there that I wasn’t even having at their age. So I was, I, I applauded the show because they did it so well and they gave such a broad representation of people and experiences as well.

Marie Vakakis: Yeah. So go WeCh that folks. It’s a, it’s a really good one, and I mean. I wasn’t even, I still probably not having some of those conversations, like teenagers for them to even start. That was amazing. So definitely put, um, [00:13:00] put it on the, on the playlist. It’s a really good one.

Casey: Mm.

Marie Vakakis: When people are thinking about sex and disability, if someone has, if they’re caring for someone or they’re a parent of a, of a, maybe we’ll say adult child for, for sake of this, how can they start to get their head around?

That being an important part of that person’s needs.

Casey: Mm. That’s a really good question, and I think it’s also really hard for parents and carers, particularly because we’re in kind of a bit of a. Generational gap where we’re moving from it being such a taboo and shut down topic to now people are growing up and starting to be able to talk about it. So we’re, we’re seeing the older type of parents and carers where they’re not ready or able to have those discussions.

So I think it’s really important to do your own self research and figure out. Through the research, how you can help the people that you are supporting. And like the main goal isn’t [00:14:00] to go and say, Hey, we need to talk about sex. ’cause that’s just scary for everyone involved. ’cause you don’t know where it’s gonna go or what they’re gonna say.

But it’s, it’s just around giving them that, that freedom to be able to. Either talk to an expert or talk to someone who is a safe person for them that is comfortable with doing it. It doesn’t have to be the parent or the carer that has the conversation with the person. So it’s just about setting them up with the environment and the ability to explore their sexuality if they want to.

Marie Vakakis: How can people inquire, like if they’re a carer, I would imagine. And, and when I worked in the disability space, we um, helped some of the residents access sex workers as a way to, that was part of what they wanted, and they had the money and that was, that was all fine. And I can imagine though, in some environments it can feel a little.

Iy or predatory or inappropriate. And I remember having a conversation even with a psychiatrist who was talking to a, a young man [00:15:00] and talking about the side effects of a medication and mentioned that having difficulty with erections or premature ejaculation was a side effect and the people in the room were horrified.

Like, how is he mentioning that? That’s really creepy. But we know that that can be a really big reason. Some people don’t take their medication or they think something’s wrong with them, and then they can be all this shame. So how do we have those conversations without it feeling ick or taboo or predatory?

Casey: Mm-hmm.

Marie Vakakis: also not wanna, by not talking about it, we’re showing that it’s not okay to talk about.

Casey: Yeah. And I think the more that you talk about it, the more comfortable you become with being able to talk about it and knowing who you can talk to. Um, like in that instance it was a health professional and thankfully they knew how to have the conversation. They didn’t just shut it down either, which is really good to hear.

’cause I have heard so many times where it’s just been shut down. So I think. Yeah, practicing your conversations and [00:16:00] acknowledging that we’re talking about an adult that wants to explore their sexuality as well, um, and giving them that freedom. I know it’s really hard to kind of let go a bit, particularly when you’re in a caring role.

Um, but yeah, the, the more space you give it, the more comfortable it becomes.

Marie Vakakis: With when it comes to carers with, um, people with disabilities, especially their children, the extra. Extra layer there, I feel is there’s a, sometimes there is a bit of burnout from a lot of care responsibilities, but then there’s also a maybe infantalising and people not seen as able to make the same decisions, or even some parents fall into a a space where they’re kind of, their identity has been about being needed and to relinquish some of that to realise maybe there’s a need that they can’t meet or.

They, they have a weird control where they can control how their, [00:17:00] their, their child accesses certain things and they can kind of impose restrictions because of their own discomfort and feelings of maybe rejection or, you know, not ready for them to grow up. Or what might this mean? Do you see some of that play out in, in your work?

Casey: yeah, absolutely. It is too far, too common and it’s a really hard space to work in because while I’m being brought in as the expert to teach their child about sex education, it’s more around educating the parents around, um, self care and that. Uh, separating themselves from their now adult child, not to the point where they, they don’t, they’re not caring, they’re still caring, but they’re giving their child space to be able to explore what they want to explore.

And it’s particularly where there are restrictions involved, that’s even harder, um, to work around as well, because [00:18:00] generally the restrictions were there before I came in. So it’s really hard for them to understand why. Why that’s not okay. Um, and why that, that shouldn’t be happening to that adult.

Marie Vakakis: So if someone’s listening and they’re the carer of an adult child with a disability, what might you encourage them to consider? Or what can they start to ask themselves?

Casey: How can I support my. Child or whoever it is that they’re supporting to be able, we’re talking about adults to be able to explore their sexuality in a safe way. There is also the. Um, the high risk of abuse. And so what we need to know is that when there’s that sex education that’s been brought in as the foundation, the risk of abuse actually lowers quite significantly.

So setting them up in an environment where they are safe and able to explore [00:19:00] dating or just, you know, learning social skills, which can translate into dating later on. Um, I think that’s a really good starting point for parents and carers.

Marie Vakakis: Have you got maybe a sort of fictional, like an example of a kind of scenario in which this education has been provided to someone and you’ve been able to see the change? Like what does that look like in practical terms?

Casey: I’ve, I’ve worked with a lot of clients around sex education. And are we, are we talking about where the parents are the carers or they’re in disability homes, or is there any

Marie Vakakis: I either just maybe one where you feel like someone’s needs were recognised and how it changed the trajectory of their sexual health or their sexuality.

Casey: yeah, yeah. There is one client that I worked with in particular, I think I’ll always remember them, but, um, they [00:20:00] came from a very religious background. They acquired a disability and they knew that they were gay. But their environment told them that they couldn’t be. And so we worked on what their life could look like.

We dove into their, what their sexuality is, all the different parts of it, their gender identity, their their, um. My mind’s just gone, Blake, but we, we did lots of work around sexuality for this person in particular. And then we also went out into the community to practice some of the skill, the social skills that can be translated into, um, relationships.

And by the end of our journey together. After we closed our sessions, I got a text from them and they said, if it wasn’t for you, I wouldn’t be living the way that I am. And that they’re so happy with how their life is now because they didn’t really [00:21:00] have much hope for the future before working with me.

And that was just, that was just so amazing to hear that they had come out of their shell so much and they were so confident in themselves and their ability to. out in the community and find like-minded individuals.

Marie Vakakis: So, I mean, that’s such a lovely story and I’ve heard similar ones. Perhaps a, a way in for some people is, if they’re really uncomfortable, is to maybe mention this episode and ask that person, would you like to see a therapist who specialises in sex and relationships? And they can answer all your questions because you don’t have to.

You don’t have to actually be the one that answers all those questions. I think my parents would be the last people on earth I’d wanna have these conversations with. But if they put it forward, you know, saying that this is an option for you, it’s saying that it’s okay. I acknowledge that this exists for you and you can explore it in a safe and confidential way with an expert who knows [00:22:00] things I don’t know, and can talk about it without blushing and no questions off limits, like would that be a nice way to get started?

Casey: For sure. Yeah. And when you think about it, everyday, adults don’t go to their parents for sex advice. So why should people with disabilities have to go to their parents for sex advice? So I think that’s a really good starting point.

Marie Vakakis: And if you do go to your parents for sex advice, I’d love to hear from you what happened and how did that go. Please, uh, there’ll be a link in the show notes follow. I’d love to hear from you. That would be very interesting.

Casey: that would, yeah.

Marie Vakakis: If someone is listening and they’re the one with a disability, whether it’s something that’s, uh, forever or a chronic health condition or an acute flare up of something, that means that they can’t engage in sex the way that they used to or the way that maybe other people do, how can they start to, like, where can they start to reclaim their own sexuality and intimacy?[00:23:00] 

Casey: Good question, and I think around. If we’re looking at pleasure, how? How were you feeling pleasure before, why isn’t that working now? And how can you find new ways of feeling pleasure? So I guess it’s exploring as well. So following the sex experts on social media and um. I would say Googling, but please don’t always Google because not the best thing comes up all the time.

But I guess just researching for yourself. There’s so many books out there around pleasure and how to find it and yeah,

Marie Vakakis: What do you think of the book? My Body isn’t an apology. Have you read that one?

Casey: no.

Marie Vakakis: So it was written by someone who heard their friend ask for the contraceptive, like the morning after pill, something like that. And she said, oh, what? Like this friend had a disability and she said, why didn’t you? Insist on, on using a condom, [00:24:00] like out of curiosity.

And she’s like, I already felt bad enough that he was having sex with me and I had these issues. So there was sort of like this realisation that she felt like someone was throwing her a bone of like, oh, I’ll have sex with you even if you’re disabled, that she didn’t feel she could ask for more.

Casey: Mm.

Marie Vakakis: And then the book, the, uh, your body, is it My Body?

Your Body? Let me get it off my bookshelf. Um.

I wish I put them in alphabetical order ’cause they’re just by color and if I can’t remember what color the book is, that’s not helpful.

Daniel will edit this out. Uh, the body is not an apology and it comes with a workbook.

Casey: Oh, that’s amazing. I’m gonna have to look that

Marie Vakakis: So this is a really good book on just embracing your body and [00:25:00] being entitled to pleasure and not being just a, a vehicle for someone else, essentially. I.

Casey: Absolutely, and I think that’s something else that we’re so conditioned to as well, is that particularly for women, our body is usually owned by a man, which is really unfortunate because there’s so much power in owning your own body and owning your own pleasure as well. And everybody deserves to feel pleasure no matter how your body works.

That’s just a human right. Really.

Marie Vakakis: If someone’s really struggling with this concept and maybe they don’t even know what feels good in a non-sexual way, where can they start? Like. I know sometimes when I work with couples, I spend a lot of time if, if sex hasn’t has been a concern in the relationship. They haven’t had sex for a long time.

We focus a lot on feeling pleasure in other ways first, and that can be by taking sex off the table or how they’ve defined sex previously and [00:26:00] actually focusing on. Touching, hugging even maybe. Do you like the smell of your partner’s perfume or cologne or, I don’t know about you, but when the hairdresser does that little math massage when they’re kind of wrenching your hair, it’s like, oh, that feels so nice.

So getting that person’s body used to touch and f feeling that and being in the moment,

Casey: Mm-hmm.

Marie Vakakis: how do you encourage someone to do that?

Casey: I think like you mentioned, through the sessions, you can find out other things that they enjoy and then help them understand parts of that that are actually pleasure, not sexual pleasure. They’re just pleasure because there is the two different types, the pleasure and sexual pleasure. And so I think focusing on that more and like you mentioned, getting used to being okay with feeling those feelings, um, and then transitioning slowly into the sexual pleasure.

Marie Vakakis: Hm. Any tips on what they could do [00:27:00] to start like at home on their own, in the bath and shower with a feather?

Casey: Yeah, I guess it really depends on what you like particularly sensory wise. So if it is, you know, you. Our own. We can touch our own bodies when we’re in a private place. So we can start by doing that, not necessarily in a sexual way. Um, feeling our skin in different parts of our body and see what that feels like.

Um, feeling the water running over our body in the shower, um, laying in bed in clean sheets with no pajamas or underwear on those sorts of things just to kind of desensitise us to, um, be able to accept those feelings of pleasure in other ways.

Marie Vakakis: Yeah. Fantastic. And if you could wave a magic wand and sexual health education. It was radically changed. What would we be learning differently?[00:28:00] 

Casey: Hmm. If that was the case. We’d be learning from the get go from not only school, but also at home. It would be an everyday part of the conversation. Like when you sit around to eat dinner with your family, you can learn about how our. Not necessarily dinner, but learn about how our bodies work in, in the safe environment.

Uh, and it wouldn’t be taboo, it wouldn’t be, there wouldn’t be shame attached to it. It would be just a regular conversation, like we have conversations about our knees or our ankles, those sorts of things.

Marie Vakakis: Yeah. Wonderful. And if people want to get in touch. With you? What are you working on? How can they get in touch? I’ll put links to everything in the show note. It’s.

Casey: Amazing. Thank you. So my website and my business is pleasure pixel.com au. I do have a professional development course [00:29:00] for support workers up on my website and some other resources for adults because there is such a. Big gap in, um, adult sexual health education. I’m gonna start working with clients again soon, which I’m really excited about.

Um, I love working with clients and, um, yeah, more things coming in the future as well.

Marie Vakakis: So how can people know if it’s time to see a sexologist or sex therapist or somebody like. At what point do they think, oh, maybe there’s, there’s a professional that can help me with this. Just like I learn about everything else in life, right? We spend so many years on our education and workplace training and, and webinars and all this stuff, and yet something is as fundamental as sex.

Some people have not done a single thing. They’ve not read anything, learned anything. They just go based on assumptions from when they were younger or what they see in. Porn.

Casey: Mm-hmm.[00:30:00] 

Marie Vakakis: If someone’s asking themselves questions, when’s the right time to get some professional help? Yeah.

Casey: I think as soon as you have that thought, I don’t think there’s any right or wrong time to seek out extra help. And I really wanna make the point that sex therapy and sexology has no physical touch. It’s all talk therapy. So there is no touching at all between the client and the therapist. It’s a very safe environment, just like any other, um, counseling or psychology that people experience.

Marie Vakakis: And what can they learn? Like how do they, if they’re really awkward and uncomfortable, they don’t like, where do they start? Where do people look for someone who’s got the right skills and expertise?

Casey: Oh yeah, and that’s even harder as well because it’s so hard to find people that are experts in this field. There are. Um, enough of us across Australia to help though. But like the Society of Australian Sexologists has a list of [00:31:00] therapists that are available. Um, if you look through, um, if you search up sex therapist or sexologist on, um, social media, you’ll find people as well and just know that it’s okay to be scared or shy about seeing someone, um, because.

Once you’re in that room and you’re not, you can feel that it’s a safe space. You can be directed to areas that you are comfortable to talk about with the therapist.

Marie Vakakis: Fantastic. What an interesting conversation, and hopefully people get. Some tips out of it on what they can do different and how they can support maybe loved ones or even I know reignite their own sexual intimacy and desire and sex lives.

Casey: absolutely. Yep.

Marie Vakakis: I.