Acquiring a Disability: Intimacy, Reimagined

Alistair Baldwin
This episode is recorded on the land of the Wurundjeri, Woi wurrung people of the Kulin nation, and would like to give our respect to their elders, past and present. Love without limits is a podcast about intimacy and yes, sex. Just a heads up, we'll be talking openly about topics that might not be for everyone.

Madeleine Stewart
I'm Madeline Stewart

Alistair Baldwin
And I'm Alistair Baldwin, and this is love without limits, a podcast where we get deep and sometimes a little spicy, talking about sex, love and relationships for disabled people just like us

Madeleine Stewart
This episode, we're diving into what it's like to be intimate after acquiring a disability

Alistair Baldwin
Which, so, I mean, sex is complicated enough when you're used to the body you're in, but bodies changeevery day, and when you acquire a disability, you have to figure out new ways to do lots of things.

Madeleine Stewart
Yeah sex, dating and being in a relationship. Now, full disclosure, we were both born with our disabilities,

Alistair Baldwin
Yes, unless you count a later in life ADHD diagnosis as acquiring one. But I mean, certainly my muscular dystrophy isn't a static thing, and what I can and can't do is always shifting, dare I say, evolving like a Pokemon.

Madeleine Stewart
But the thing is, anyone can acquire a disability at any time, like even if you've already got one. So look, I'm here for tips. I'm here for tricks I'm ready to learn, just in case I lose my other arm. Fingers crossed.

Alistair Baldwin
Fingers cross. Well, why don't we jump in to chatting with our fabulous guests on the ways that becoming disabled has shaped their relationships to identity, sexuality and romance.

Madeleine Stewart
Our first guest is Mandy McCracken, a writer, speaker, disability advocate and regular face in Australia's media in 2013 a young mum at the time, Mandy lost both her hands and her feet to sepsis, and she's here to speak to us a little bit more about this. Thank you so much for joining us. Mandy, Hello and welcome.

Mandy Mccracken
Thank you. Thanks for having me

Alistair Baldwin
Just to kick off, I was curious to ask how the loss of your hands and feet reshaped your relationship to your body?

Mandy Mccracken
Oh, that, that is, that is the massive question, enormously, yeah, I had really nice legs. I had great legs. I used to love wearing mini skirts, and now my legs are black, and they're made of metal. And, you know, it's really hard to find anything sort of, you know, attractive about prosthesis. They can be pretty intense. So, yeah, I I had a massive grief period when I lost my hands and feet, about my body image, and there was a huge amount of processing that went on.

Alistair Baldwin
I mean, through my life, I've been, you know, not had leg braces, and then having leg braces, and then fashion trends as well, dictating whether we're in a skinny jean set or wide baggy pant set. And it really is.

Mandy Mccracken
I am enjoying the wide baggy pants

Alistair Baldwin
Absolutely.

Mandy Mccracken
I must admit, with wide baggy pants, people don't get out of the way because I can't see your prosthesis.

Alistair Baldwin
I used to be able to do them on the outside because they were skin tied, and then fashion changes. And now it's all cargo and all flares, even. And I, yeah, people are like, I don't know. I feel like I'm passing in winter. And then when it's short season, people are clocking me.

Mandy Mccracken
It comes back out again. And you, yeah, they part the waves.

Alistair Baldwin
Absolutely.

Mandy Mccracken
You get an easy path.

Madeleine Stewart
So, Mandy, I was born with one arm, but I know that you you acquired your disability, and I was just wondering, How did losing your hands and your your feet reshape the way that you relate to your own body?

Mandy Mccracken
So, I went from, you know, life was easy before I was disabled, life was easy. And, of course, you've got no idea how easy it is until, of course, you lose that ability. I could do anything. You know, you could please your partner in all sorts of ways and or yourself in any way you wanted. And once you've lost your hands, like, how do you do that? And the frustration, you know, not being able to do what you used to be able to do was incredibly frustrating. You know you're trying to be intimate, and you're trying to bring back what you had, and you just you can't, you can't do that anymore at all. So my husband and I, we had to practice and give ourselves permission to fail. There was a lot of failure, and it got to the point actually, that we ended up having to book ourselves on a weekend away until we could just practice and practice and practice until, until we got back to like a slither of what it was beforehand.

Alistair Baldwin
What was that period of relearning, or did you feel like you were redefining? What intimacy was in your relationship, and even discovering things that you weren't doing or didn't appreciate beforehand. Was there that kind of shift?

Mandy Mccracken
I think so much of it was just trying to get back what we'd lost. I don't think we actually had the headspace to look forward. We weren't forward focusing it was so reflecting on your past life. It's interesting when I have discussions with other people who are newly disabled, you know so much of what they're going through is allowing yourself to let go of what you used to have and being okay with what your future looks like, and that, you know, will you ever get back to what you had in every aspect of your life, whether it's sex or work or, you know, being able to walk up a hill, you know, just to sit at the top of a hill and look out over a hill like you may never be able to do that again. So you've got to find enjoyment somewhere else, and in your sex life, it's the same. It's like, okay, so you can't do that thing that your partner or you used to love to do. You can't. You cannot do that at all anymore, ever again. So where do you find Okay, well, where's the next thing that I'm actually going to learn to love as much as I did back then

Alistair Baldwin
Do you think for people who are newly disabled that you know sexuality and intimacy? Is that something which is prioritised by medical professionals or support staff or? No, an instinct! It was a little bit of a leading question.

Mandy Mccracken
No. So I was in hospital for a year. I ended up doing, I think, three different hospitals through my illness, and nobody discussed sex, no, no one, because everyone's embarrassed, right? Yep, and I think also, like I was, I was 39 when I lost my hands and feet. Often, the people who are on the other side of your bed at hospital are young graduates, you know, they might be 24, 25 years old. And how do you have a conversation with somebody who's got kids, you know, right? Like they've had such life experience, and they've got this young, little graduate coming out of uni, and they want to tell you how to do things. It's it's a very uncomfortable situation. So I know that a lot of universities are now having conversations with their ot students about making sex important like it is. It needs to be included in in the curriculum that you have with a patient. You know, you need to learn how to eat, how to sit, how to drive, how to go to the toilet, how to have sex, how to put your shoelaces on. You know, it should be as mundane as the rest of it.

Alistair Baldwin
Absolutely. I mean, what are some of the complications or challenges when you've got someone whose caregiver is someone that is a lover or..

Mandy Mccracken
Well, my husband is my carer, yep. So if I want to zhuzh things up and put some sexy lingerie on, he actually has to go and get it, put it on me, and then I go surprise, and then he has to take it off me again. Like, you know, yeah, that partner dynamic, carer dynamic. It really puts a stick in the mud, like it actually is such a difficult relationship. Change to navigate is really hard, and it does. It takes spontaneity out, you know? It just makes it really hard, and you've gone from being capable, you know, looking after yourself physically being at showering or doing your hair, or, you know, for women, you know, period care, that sort of stuff, your partner's now doing it for you. So it takes any privacy or secrecy or surprise completely out of the equation.

Alistair Baldwin
Is there a challenge in, I guess, clearly, having that shift from one role into the other role? Or do you think all of the challenge lies in that kind of ambiguity of touch and finding a way to differentiate that kind of functional touch to maybe more intimate sexual touch.

Mandy Mccracken
A lot of people, I've heard as part as a carer, they say they're too scared to touch their newly disabled partner because they don't want to hurt them. And you need to open up that conversation so that you can say, Okay, well, you know, I want to be touched like that. Can you, you know, can you stop take off your carer glasses and put on your partner glasses again and see me in that way? So much mental anguish is going on around the fact that their bodies have changed. You know, be it for the person who's had their body change or the partner that's seen their body change like. Yeah, you know, am I allowed to see you still as a sexy human being, or can I not go past the change of your body like it's really complicated?

Alistair Baldwin
Do you feel like a lot of that fear around you know, maintaining or reigniting that kind of intimate touch stems from just a complete lack of the representation of these kinds of relationships in our media that people aren't really seeing this.

Mandy Mccracken
Yeah, it'd be nice to see more disabled people on our screens just living everyday life. It's also a matter of committing yourself to bringing sex back to your life. I had an OT once that said to me, it's like playing tennis, you know, you have to book the court, you have to put the right outfit on, you have to grab your racket, and you have to go right. We're going to play tennis. It's, it's the same thing with, you know, having sex for the first time, after you've had a massive physical change, you have to go right. We're going to do this, and it's going to be messy, and it may not work, and we have to practice and to decide that that's just too hard and it's too scary, is not going to be beneficial for anyone

Madeleine Stewart
when you first acquired your disability, were there any you know, awkward, funny or unexpectedly beautiful experiences that you had?

Mandy Mccracken
My husband really misses being able to hold my hand. Yep. So you know, with simple things like that, are out of the window. So we need to find, you know, how do you walk down the street and be connected to your partner when you don't have a hand, and how do you if I, how do i i link arms with him if I'm not wearing my prosthesis? It's actually really hard to do because I've got nothing to sort of link with, you know, sitting in the car, you know, just rubbing my husband's leg like I'm doing it with something that's made out of plastic and metal, but it's still me at the other end. You know, it's something that I am trying to do. So connection for me is through conversation and physical closeness. And, you know, I've been disabled for 12 years, and I'm still learning and working this out, and I'm really not sure how to how to do it. And as your body ages and changes, that's a whole different kettle of fish as well so

Alistair Baldwin
The only guarantee in life is that things change. You're talking a bit about communication being a key part in especially this period as well. Do you have any advice, I guess, for people who are maybe newly in a situation like you were 12 years ago about what are some of the communication tools or strategies or approaches that you could offer as advice?

Mandy Mccracken
Yeah the first thing I would say is actually, make time. Really make time. The stress levels that you will be going through will be completely through the roof, and everybody around you will be dealing with that sort of stress as well, what my husband and I did, and we went and booked a Airbnb and disappeared for a weekend, and we just debriefed I'd been dealing with my physical challenges, what have you been dealing with? And we just explained what the situation had been for each other, and I had no idea what I've been going through, and I've been away for a year, like, Okay, well, you've been home by yourself for a year, and how have you been going sexually, intimately, you know, being away from me, and what does that look like? And you got to check in and see how things are going. And even in the bedroom when you're at it, you know, check in. Is this working for you? Absolutely. Have you got an idea? Is this something you'd like to try that I'm not thinking of like the movement around a bedroom is really hard work without hands and feet, because you can't push against the bed like there's nothing to push against. You know, fortunately, my husband and I have been together for 25 years or so, so we both know really well what turns us on and what works communicating what you like and what you'd like to do. It's just a matter of, you know, when you're halfway through, it's just, like, just a little to the left, yeah,

Alistair Baldwin
well, I feel like in long term relationships, there's always that, like, body language, kind of, you know, you just understand each other through time shared and, you know, a raised eyebrow can say everything,

Mandy Mccracken
yeah, yeah. Also, another way that my husband and I are communicating is we're sending videos on social media to each other quite regularly. It's like I saw this, this might work for us.

Alistair Baldwin
Yes, absolutely, a little sharing a fun meme or a screenshot from the Kama Sutra. Or, you know, the role of social media as foreplay is very undervalued. Something that's come up a lot through this podcast series is the role that confidence and finding self confidence. Has in finding that confidence again in the partnership, and regaining that dynamic, whether it's intimacy, regaining that kind of hot, sexy touch, or whatever. Could you speak a bit to your, I guess, journey with confidence and the ways you've found it or struggled with in your shifting ability.

Mandy Mccracken
For me, rebuilding my confidence has been a great psych, yeah, to have someone that you can have, you can lay it all on the table without offending them. You know, the conversations I've had with my psych I could not have had with my husband or my girlfriends, but to be able to for me, to be able to process that situation, my situation by talking to somebody regularly, I would say anybody who's newly disabled, to have somebody that you could chat to is incredibly important. And someone said to me, once, you know, if you try something 99 times and you give up, it might be the 100th time that you actually get it to happen, you've got to allow yourself to fail, you know, so, and the patience that you have to learn to allow that failure is enormous, and the whole process is just huge. So be kind on yourself, but have the courage like grit those teeth damn hard, and just for crying out loud, get out there.

Alistair Baldwin
Yeah. Can you speak to any experiences where that persistence and perseverance and gritting your teeth through the trial and error has paid off?

Mandy Mccracken
Well, I can tell you that that weekend away with my husband, we gritted our teeth and we worked bloody hard, and we finally both got there.

Madeleine Stewart
So reflecting on your journey so far, if you could tell your newly disabled self one thing about intimacy or sex that you've learned since, what would it be?

Mandy Mccracken
Of course, it's all going to be okay. You will find pleasure again and intimacy again, and it may not look like what it did originally, but that's okay. And things change and evolve and and move and time and patience is will will give you what you need.

Alistair Baldwin
Thanks so much for coming on the show Mandy. It's been a wonderful chat.

Mandy Mccracken
Thank you. I enjoyed it. That was great

Alistair Baldwin
Well our second guest today is Tori Bellentina , who's a sexual rehab and educational sexologist, which is a great job title, honestly. Welcome to the show, Tori.

Tori Bellentina
Thank you for having me.

Madeleine Stewart
Hey, Tori. We're so excited to have you here. Our first question for you is, when someone acquires a disability later on in life, what are some of the biggest and maybe even least talked about impacts on their intimate and sexual life?

Tori Bellentina
Yeah, I think for a lot of people, especially when acquired later on in life, there's often a real lack of conversation, because that could have been like quite a traumatic experience. And so often in the medical field, they're just like, you're lucky to be here. You're lucky to be doing what you're doing now. And so there's such a medical focus, and not so much on that emotional, physical, sexual level. And I find for a lot of my clients, it can be years down the track that they finally have the question asked, like, how's that going? And they're just feeling like, a little bit shocked, a little bit like, like, I don't know how to answer this. Like, nobody's asked me. So there's this lot of grief, of loss, of what has been in the past, and you know, maybe their relationship's broken down in that period. And, you know, they've felt really neglected. So it can sometimes be as horrible and as debilitating as they've missed out on key rehabilitation time. Yeah, in that time, and so they've gone through a lot of body atrophy, where things are no longer able to be fully rehabilitated to what they may have been. So then there's a huge grief of loss there, of if only I had been asked this question earlier.

Tori Bellentina
The confidence to ask myself, but now I have the confidence, because I've gone through the system and now, like, what? What Ifs so there's just that horrible loss of confidence and loss of what are your autonomy, and it can be so difficult for somebody to, like, pull out of themselves and be like, I need to advocate for this now. Yeah, because they maybe have never had a sexual conversation apart from with an intimate partner, yeah, their entire lives. Yeah. I. Whereas I find people who have, you know, have disabilities throughout their entire lives. They have often, you know, they they know they have to ask the questions otherwise they're not going to get the help. They're already in the system. They know, like, if I don't advocate for myself, no one will.

Alistair Baldwin
Yeah, if only it had been a priority for pleasure.

Alistair Baldwin
It's almost like being a doula, guiding someone into, like, this new kind of life that they're in, and this body that they're in. I mean, you talk a lot about helping newly disabled people advocate and ask those questions. Would you say that you work mostly with, I guess, the disabled people, or are you also working with the professionals around them, these medical professionals, who are maybe also not asking that question?

Tori Bellentina
Yeah, I'm very, very privileged in my work that I do a lot of in services at the major hospitals in Melbourne. So I get to come in and talk to them about what options are available, that we do exist as sexologists, and what our work is. So when it comes to a conversation that they may not be comfortable having, because it could be a client being like, I'm a really big BDSM participator, and how do I, you know, as a super vanilla nurse, maybe you don't have that conversation. So they know, oh, these things do exist. And you could go here and here. And so I do get to do an amazing amount of work, doing the conferences for like stoma and cancer conferences, and helping people understand sexual options and accessibility AIDS. And then I do get a really wonderful amount of clients that come from all walks of life. They may not know that there is those educational points that they can access, and they might just be feeling well, sex is this ABC way, I can't change that, and I don't know I no longer fit the model, so I can't have it anymore.

Madeleine Stewart
And I wanted to know, like, what are some ways that sexologists like yourself can do and like, what kind of roles can they play to support people with disability, with intimacy and sexual expression, especially for people who have acquired their disability a bit later on in life, like, yeah, what kind of roles do you play to, like, uplift and support? And

Tori Bellentina
I think just there's always got to have a big conversation, and then also being available and creating space for additional parties to join that conversation. So I find with a client who's taken the absolute like, fought tooth and nail to come and see me and get it funded. And, you know, set that time aside. I'll always reach out with their support worker as well, and just be like, if you need any support, if you need any help, like, it's free labor on my end, but it's, it's a key to somebody's life. It's a key to somebody's like, absolute positive change. So, you know, a 20 minute phone call with somebody who might want to just call me up in a couple of weeks and be like, actually have another client, and I've got a question, like, can you give me some advice on this? Like, it's 20 minutes of my day, but it's it could be a game changer for somebody. So I think we got a gatekeep less in our industry. I think everybody who has crucial life information should just never gate keep, give it to everybody. It's a big pie we can all share. I think you know, academically, we definitely need to push for more recognition. We need to push for more training. We need to get our government recognise, recognising these things as well. But I think sexologists, we also depending on where you're working and who your peers are like, you know, I'm really grateful to have such great access to other medical workers and calling out crappy behavior and crappy opinions as we all do, and being an ally in that sense. But then, you know, always having an open door for communication of being like, hey, let's let's do that. I know from from one of my major workplaces is passion fruit, and, you know, to make it accessible and to make it something that people can do, we've created free consultations for people with access needs, so they know that they can come in and have a one on one with an educator completely for free, to just figure out what devices and what things are actually going to work for them. And they can choose to do that on themselves. They can choose to bring a support worker with them, and then have that conversation with one of our educators. And like, I think for a business, a small business, to do that is pretty incredible.

Madeleine Stewart
That sounds like a fun afternoon for me. You know what? I mean? Let's talk about sex. Yeah, that's wonderful.

Alistair Baldwin
Well do you have any stories about moments when you really felt that your work created a positive impact in someone's life?

Tori Bellentina
Absolutely, I remember one client who had gone through a lot of grief, and, you know, a loss, a loss of function, and had had sat with that loss of function for well over five years and just kind of thought, well, that that's the end of the game for me. Then they'd kind of met somebody, and they got excited about potentially trying again. And I gave them one of my rehab programs that I worked with. Victoria Cullen, from a touchy subject, she's created an amazing prostate cancer rehab program.

Madeleine Stewart
Also excellent name, yeah, touchy subject,

Tori Bellentina
Fantastic. I highly recommend if anyone's got Ed issues, she's the queen. And so she's she's trained me, and so I gave this guy, he didn't have prostate cancer, this function and this program, and within a week, he called messages, it's all working, and life changed. Like, he's just like, I can do all this stuff now. And it's like, you know, was 20 years ago, and, you know, incredible. Like, you know, within that period of time of things being lost and disconnected from the body, and just being like, I'm unable to do this, and being able so quickly get back into it. This is very like, I'm so excited.

Alistair Baldwin
And it would just be so game changing for your clients and also the people there in relationships as well. Yeah, this kind of work, it's not just for the specific person, but it can often be a very key part of their partner or their sex life,

Madeleine Stewart
and affects so much of your mental health as well. So that's incredible work that

Tori Bellentina
Yeah, and a supportive partner like that comes along to these meetings and is just an absolute gold nugget. So like, I implore anyone you know, if their partner has an acquired disability or a disability, come with them, because you're a major part of the conversation and you're there to absolutely game change. I will hear so often with people who have acquired disability or have you know anyone else that's impacted sexual function, that sex is better now because it's changed the status quo, they are very much on this formula of this is how we have sex. And yeah, it's okay, whatever. But now things have changed. We have to reinvent and that sex changes and becomes more explorative and a lot more emotional, a lot more deeper, yeah, and when you've got that partner that's there to drive and help support that, it's invaluable to the whole experience. And people are like, sadly, it was a blessing. You know, this is something that's really changed for us, but, you know, we have such an amazing outcome from it now.

Alistair Baldwin
And especially the way that, you know, sex education in this country is that feels like a lot of people are just learning this very CIS, heteronormative, auto pilot kind of sex. And I've always said that disabled people are the most creative lovers. I've got my hydraulic bed so I can get any angle that I want, feet elevation, very handy. Sounds like you're making some huge strides in your own work. I've had my mind blown about 10 times just in this conversation. So thanks so much for joining us on the show today.

Tori Bellentina
Thank you so much for having me and hosting this and creating this space and this discussion, because it's game changer.

Madeleine Stewart
What an incredible episode we've had. I really like talking to Mandy. I love connecting with other people who have, you know, stumps like me. It's such a special treat. I love picking their brains and learning a bit more about how they live their life and and it's really interesting for me,

Alistair Baldwin
I know, and how good was it talking to Tori about kind of professional work that she does, doing sexual rehab. And, I mean, sexologist is like my dream job title, so I was just such a great insight.

Madeleine Stewart
Oh my gosh, I'll see you in the next series of maps with that title.

Alistair Baldwin
Well that's it for today's episode of love without limits. Goodbye.

Madeleine Stewart
This has been love without limits, hosted by us, Madeline Stewart and Alastair Baldwin.

Alistair Baldwin
And produced by Eliza hull, in partnership with SBS and attitude foundation. SBS team is Joel Supple and Max Gosford. Recorded at session in progress.