Behind The Spine: Episode 19 Transcript

Disability & Sex: More than a sex toy with Andrew Gurza

Hi, I’m Mark Heywood, and this is Behind the Spine, a podcast which deconstructs genre and narrative and finds learning opportunities for writers in the most unlikely of places.

“I made the conscious decision to stop masturbating because it hurt. I lost a lot. I grieved a lot. I still grieve a lot.”

There are things you never think you’ll discuss, let alone broadcast, but a theme that comes up repeatedly on this show is the need to inform yourself as a writer. In episode seven, I discussed how writers need to approach the subject of sex with intimacy coordinator, Ita O’Brien. Today we’re going a step further. I want to know more about sex and disability, and what writers can do to improve portrayals of disabled people in fiction.

Let me put this bluntly. How would you react if you were told you could never masturbate again? It’s probably a question you’ve never even considered, because why would you? Most would agree that self-pleasure is a human right, an experience that many of us take for granted. Sure, there are people who struggle to have sex for varying reasons, but when it comes to having a wank, there really is nothing stopping you. Except, for some people, there is.

Many disabled people cannot masturbate, whether it’s because they don’t have hands, they have little to no motor control, their body doesn’t move in the right way, or they feel pain when they do try, and that’s where today’s guest Andrew Gurza comes in. Andrew is a disabled man whose experiences led him to co-founding Handi, a company which makes sex toys for disabled people.

Chapter 1: Smashing Taboos

Over the years, many great pieces of literature and ground-breaking films have begun conversations that we’ve shied away from for far too long. Even as recently as 2005, the gay relationship depicted in Brokeback Mountain was a scandal to many. How far we’ve come since then, but because those conversations have been started, we’re uncovering more and more new untapped narratives, and increasingly we’re seeing the power of the arts to break down barriers. West End musicals like Everybody’s Talking About Jamie, which explores the sexuality of a wannabe drag queen, have become far more commonplace, and that can only be a good thing. But there are still many frontiers that have yet to be crossed, and Andrew is opening up one such conversation. So how did the idea for Handi come about?

Andrew: Handi came about through conversations with my sister. I was visiting Australia back in 2018 with my family, and Heather lives down there, and so we were talking about just things that we could do to make my life as a disabled person better. And she works in advertising, and I have this lived experience with disability, and I’ve worked in the disability space for a long time, and we were just talking about what are some of the struggles that I face. And I said, “Well, masturbating is really hard for me.” So we were talking about that, and it didn’t come about right away. We just got to that part of the conversation, and she said kind of naively, “Well, why don’t you just use toys?” And I said, “Well, look at my hands,” and I showed her my hands, and kind of how they don’t look like the conventional hands we see. They’re kind of spastic and tight, and they have different ways of being, and they’re just tighter than your average hands.

So I explained this to her and said, “Well, these toys don’t work for me, and I can’t really access them, so I can’t really masturbate,” and again, this is not a conversation you would generally have with your sister, but it kind of just happened organically because I work in sex and disability already, and I’ve done so for years and years. Having those conversations isn’t foreign to me, it isn’t strange. So it kind of happened organically, and then she said off-the-cuff, just said, “Well, why don’t we make one? Why don’t we make a toy that worked for you?” And I remember thinking, “Oh, do I want to make a sex toy with my sister? I don’t know about that,” but then she was really adamant that we could try and if it fails, it fails, but let’s give it a shot. And I said, “Okay, that’s a great thing to do,” and then it kind of was born that way.

And then we realised as we started doing it, and as we started putting the question out to disabled people in the community, how big of a problem it is. We realised that there are no toys on the market specifically designed for people with hand limitations. There are no toys specifically designed with disabled people in mind. They may design toys for the elderly population a little bit and that’s sort of coming into the fold now, but really putting disabled people first, there wasn’t anything like that. And as we did our research, we found that hundreds of millions of people live with hand disabilities, arthritis, different things like that, and so we realised not only would this serve the disabled population, it would also really make an impact in the elderly population as well, and it would really bridge that gap, but then also, looking at people who maybe want to use a toy and not use their hands and maybe want to try something different. So it really can serve everybody.

Mark: It’s not a subject that we are particularly fond of talking about normally. It’s a very taboo issue, and it’s not something that’s supposed to be spoken about openly, certainly not on a podcast like this. Now when you add in the additional layer of disability, that would cause a lot of people’s minds to scramble because that’s not necessarily something that they want to even think about. They don’t want to think about their own brother or sister engaging in an act of self-pleasure, but if their own brother or sister happens to be in a wheelchair, we’re not capable of processing that. How much of what you’re doing is deliberately trying to smash the wall of taboo down and make this a perfectly normal conversation? You talked about the podcast, which you’ve been doing for some time. So this is not a new conversation for you, is it?

Andrew: Not at all. Even before I started working in this field, I came out as queer at 15. I have been grappling with… not ‘grappling’ with my sexuality, but dealing with my sexuality and disability since that time, and it’s always something that I wanted to do. It’s never been a conversation that I’ve been squidgy about, because I’ve had people taking care of me my whole life. Just before you and I started talking, I had somebody giving me a shower and getting me up, helping me in the bathroom, wiping my bum. These are literally things that I deal with constantly. So my sense of what is normal and what feels weird to talk about is very different from the average person. So it didn’t faze me to want to do this. And to answer your larger question, which part of this is breaking down all the barriers? All of it, the whole thing. The whole point of what we’re doing is trying to unearth those conversations, trying to have those uncomfortable conversations because they’re there, and if we don’t talk about them, they just sit there and they become more and more uncomfortable. So the whole point of what we’re trying to do is to smash that down, but in a way that is playful and fun and sexy. A lot of the ways it’s done, or can be done, is really clinical — and we want to look at it in a way that is accessible to everyone.

Mark: The name, Handi, is a work of genius. Was that you or your sister? I know that it’s a play on several words, but you can’t help but smile and think, “That’s really clever. I love that title for the company.”

Andrew: Yes. We were talking on the phone, and we had originally called our company Deliciously Disabled. I had done some work under a brand that I made called Deliciously Disabled years and years ago. We liked that, and that was really fun, but we decided that we wanted to do something a little bit cheekier.

We were on the phone one day, and we were just bashing about ideas about what we could call this new company if we were to make a new one. So Heather said, “Well, what about Handy, like hand job?” I said, “Well, that works.” Then I was like, “Oh, Handi also can be a play on the word handicap,” which has been a historically derogative word to describe a disabled person. There’s a lot of history with that word, and a lot of people don’t like that word, but I was like, “We can turn it on, on its head and play with it.” Then weirdly enough, Handi is also a weird amalgamation of our names together. Her name is Heather, my name’s Andrew. So, it’s Handi. So, it was really fun to do that. Then, when we realised how perfect that was, we immediately said, “Yup, that one. Let’s go with it.”

Mark: That’s great. I love it. You said that you came out as queer. You identify quite openly as being queer rather than being gay, but you also use words to describe yourself that somebody like me, for example, would not feel comfortable using, but you have a wonderful hashtag phrase which is #KissAQueerCripple. Now, that I would expect from someone like Ricky Gervais in a sitcom, but this is real life. This is you taking ownership of the fact that you and your disability, and your sexuality, are inextricably linked, and we can’t talk about you without talking about the whole package. Is that right?

Andrew: Yes, that’s right. Completely. The language I use to describe myself… to answer the first part of your question, I came out as gay at 15 first. So, I came out as gay first because I didn’t have an understanding of queerness generally. Then when I hit I think around 30, I decided that I wanted to use the word queer because, well, I sleep with men, and well, technically you could call that gay. I think queer is a term that I use for myself because I don’t conform to the typical gay male standards that we have put on gay men to look a certain way. My body doesn’t conform to that, and I can’t meet those standards. So, queer is a nice catch-all for me where all my disability and all my things can go with that.

Then I’ll also use the word cripple in my work because I know that’s a historically derogative word. I know what the history of that word is. Actually, I just did a podcast that I released yesterday about the history of that word. So, I think that word is really powerful, because if you turn that word around and say, “This is who I am,” like, “I know all the bad connotations of that word, and I know what the harm that’s done. If I use it for myself, then you can’t hurt me.” If I take that word back from you and say, “This is mine. You can’t hurt me with that language,” for me, that’s great. Also, having done research on the word cripple, it’s a clean word. You know exactly what it means. It means you’re disabled. It means you can’t walk. It means maybe your limbs don’t work the same way. If you start looking at the etymology of the word, it’s very simple, very clean. The same with disabled. It’s a very clean word.

Chapter 2: The Culture of Disability

As writers, we have the power to start conversations. With the many mediums available to us these days, we can send our thoughts far and wide very quickly. With that power, we also have the ability to perpetuate unhelpful portrayals of people in society by retelling old stories, by assuming instead of investing the time to learn. When it comes to disability, television and film has been notorious for missing the mark.

Andrew: One of the portrayals that I have a real problem with was the Me Before You movie that came out a couple of years ago.

Mark: The Emilia Clarke one?

Andrew: Yes, Emilia Clarke. I love me some Game of Thrones, and Khaleesi was my girl for a good seven or eight years there! You know, until she burned down Westeros, then I had a problem. I really feel like that movie and that writing perpetuated the idea that it was better for him to die, to let her live a great life if he was not around, and they just kind of went with that. I was like, “Eww, why would you…” First of all, why would you put that in a book, and why would they make that a movie? Then when you look at the author of that book, that person is not disabled. They don’t have disabilities. So, why are you writing on this? Who’s your audience? Are you trying to make non-disabled people feel sorry? What are you doing? So it just feels… there’s so many examples of that where they write the disabled person from a place of pity and a place of sadness because that’s what society knows. They know that the audience will easily connect with that feeling, because why wouldn’t they?

So, I wish that authors and writers for both books and TV shows would remember that disability is a culture. Disability has its own language, its own viewpoints, and there are so many different facets of disability. Especially if you’re writing a TV show, hire a disabled writer. If you’re not disabled and you want to write this show, hire a bunch of disabled people in your space to help you learn, because you’re going to be ignorant. I don’t think ignorance is a bad thing in this space. I think the more and more we connect with the fact that we don’t know what we’re talking about, and we need help, and you properly compensate disabled people for their time and give them a chance to help you, that will change the game. But I do wish that people that are writing on disability would try just a little harder.

Mark: This point comes up time and time again over this podcast. It came up in conversation with Ita O’Brien, who is an intimacy coordinator. It’s come up in conversations with Richard Bradley, a magazine editor. And it’s very, very simple: if you’re not an expert in something, then become more knowledgeable about it because your writing will get better.

Ita said, “You wouldn’t expect to write knowledgeably about fetishism if you didn’t at least talk to someone who was very experienced in that particular area.” The same with Richard, and he was talking about, “You’re writing for a sophisticated audience, therefore you have a responsibility to understand the issues that are of interest to them.” This is the same thing here, isn’t it? We need to understand more about disability, so that we can write in a more informed way.

Andrew: Yes, exactly. In my work too, with the work that I do, everybody likes to call me a disabled expert. I will immediately shoot them down and say, “Well, thank you, but I’m not.” Because I think when we talk about disability, and when we talk about this stuff, and when you’re teaching somebody this to say, “Hi. My name’s Andrew Gurza. I’m a disabled expert,” that sounds weird. If I said, “Hi, I’m not an expert. I’m just here to tell you my story. I want to share that with you, and I hope it resonates,” that brings people into a lot more. So, when people hire me for writing stuff and writing jobs and they say, “Oh, your expertise is amazing.” I will again say, “Thank you so much, but you’re wrong. Let me just share my story with you.”

Mark: Here’s how I describe it. I always say, “I’m not an expert. The only thing I’m better at than anyone else in this room is being me — and trust me, I screw that up on a daily basis. So, I am not an expert.” It’s the same point, isn’t it? It’s that look, you can’t be an expert because to describe you as a disability expert would mean that you would have first-hand experience of every single disability that existed. And you don’t. You only know what you can experience.

Andrew: Exactly.

Mark: Can I go back to the products and the company? You talked about your hands, and you talked about the fact that they don’t work in the same way that conventional hands would work. Therefore, the act of self-pleasure is not something that you can do without help. Does it go much more beyond the physical act of self-pleasure? Is there something deeper and more philosophical about this whole thing?

Andrew: Yes. It speaks to independence in the bedroom. It speaks to, for me as the cisgender man, it speaks to my sense of masculinity, my sense of manhood. Think about it. Most people, when they have a wank, they can do it independently. And there’s this sense of when you read articles about masturbation, or read books about self-pleasure, there’s a very specific sense of you can do this by yourself. There’s no question in the writing or in the stuff you see that you’re expected to do this by yourself. Whereas if you’re disabled, that’s just not an option for you. So it goes much deeper than just, “I’m going to have a wank.” It’s like, “This is my time for privacy. This is my time to feel like a man. This is my time to explore my sexuality for myself.” It goes so much deeper. And when you can’t do that, like I could masturbate when I was younger, before the spasticity got worse and the disability progressed, and it hurt to do it. And when I decided… I made the conscious decision to stop masturbating because it hurt, I lost a lot. I grieved a lot. I still grieve a lot. In my community, my gay male community, or queer male community, there’s a lot of sex positivity that is like, “Oh, I’m just going to pull my dick out and masturbate and I’m going to be hyper-sexual.” And for me, that’s frustrating, because in my head I am that hyper-sexual person with all of them that wants to do all these things. My body doesn’t allow me to have that though, and that’s frustrating.

So this toy is so much more than just a product, it’s about giving people… what we say with our brand is ‘putting pleasure within reach’, and really that’s what we’re trying to do. We’re trying to say, “You, as a disabled person, deserve this. This is something you deserve. And we want to help you obtain that. We want to make you feel the hottest you’ve ever been in the bedroom by yourself without having to worry about attendant care. Without having to think about whether or not you have enough funds to hire a sex worker.” I mean, those are all options if you want to use them, but if you want to just be by yourself and get off, you should have the option to do that too.

Mark: It’s fascinating as a narrative because you are right. If you do even a cursory Google search of masturbation techniques, or how to improve your self-pleasure experience, it is a uniquely solitary pursuit in the literature, you know, if you just have a look at magazine articles or online articles or guides for toys and how to spice things up when you’re on your own. So the narrative clearly needs to change to reflect the fact that there is a large part of the population for whom that’s not possible. Does that go further than that, though? Because if we think about things like sex education in school, there will be disabled children sitting through sex education classes for whom it will make no sense, no relevance and maybe completely disenfranchising for them to hear the conventional narrative about sex. Is that something that we need to address as well?

Andrew: Oh, a thousand percent, yes. When I was in school, I remember being in health class and having the teacher say, “Andrew, do you want to go out of the room and do something else? Do you want to do like another…” And I didn’t know any better. So I was like, “Sure, I don’t get to be in class!” Sometimes I would go. But what I realised they were doing was they didn’t know how to talk to me about sex, or on the off-chance that I was in the room, and I remember going to a few of those classes where it would all be heterosexual penis and vagina sex. And I knew from a very young age that I was queer, and I was like, “This doesn’t apply to me. Like, I don’t know what, like what?” And also, I would never question it because I wanted to be the good student. I would never be like, “Excuse me, professor. Where’s the disabled kid?” But in my head, I was like, “This doesn’t feel like it’s speaking to me. This doesn’t feel like it’s for me.”

And so I think there needs to be a huge discussion of sex education. I think sex education generally is super-ableist, super-problematic. And I think we need to just do a whole overhaul of how do we have these discussions, because as we’ve kind of talked about through this episode, it’s so much more than just, “Thing A goes into Thing B, and then there it is.” It’s more about, “How do you feel about it?” So I think a disabled sexuality class needs to talk about ableism, needs to talk about how it feels, needs to talk about some of the fears that people have around sex and disability. All that stuff needs to be openly explored to really have a proper sex and disability discussion.

Chapter 3: More Than a Sex Toy

All good movements begin with an idea. This movement just so happens to be beginning with a hands-free vibrator. Because as I’m sure you’ve realised, Handi is about much more than masturbation. After all, if 99% of us never even considered how difficult it must be for disabled people, unable to pleasure themselves without assistance, then what other issues are bubbling underneath the surface? Handi is game-changing in the disability space, but it’s also a game-changer because it’s got us thinking about every unspoken story that needs a voice. It’s not necessarily about changing the world overnight, but about providing a better understanding.

Andrew: Yes. As you said that, I heard a joke in my head. I was like, “No, I can’t change the world overnight, but I can change your world in one night!” And that’s kind of what it comes down to. Yes, our product is trying to make a big splash, but I think it’s more about what can I give to one person if I can do this and talk about this? Can I give them a new world view? Can I give them something different to look at? Can I give them something different to think about? It’s about having both those big conversations, but also the little conversations too, where you get to talk with someone, and see them, and see them think about it differently, and see their mind go, “Oh, I never thought about that.”

Like, yes, we’re not going to do it overnight. But if you can instil that understanding into somebody and get them to… I think the hardest part is getting people to realise they have ableist prejudice. They have views about disability that are kind of problematic, but they don’t mean it. They don’t realise what they’re saying. They don’t realise that that saying could be problematic or those words could hurt somebody. And so my job is to not necessarily call somebody out and be like, “Oh, my god. How dare you say that?” My job is to be like, “Okay, why did you say it that way? Where did that viewpoint come from? Can you elaborate on that for me? Can you explain to me why you think this? Where did this idea that you’re telling me, that is super ableist, come from in your brain?” And getting them to confront for themselves why that might be hurtful. And so a lot of activism in the disability space, I think, has been angry. Rightfully so, because we’ve been so excluded. But I think my feeling on that is that we have to come at it with a sense of positivity. And we can’t spend our whole time in disability just calling someone out all the time, because it’s exhausting — but we can call somebody in.

Mark: We have to also be better at being on the receiving end of being called out, I think, as well, and see it as a very positive thing, because sometimes even the most innocuous comment can have such a devastating impact on a person being on the receiving end of that. I’ll give you one example. A couple of years ago I was at an event, and it was a trans performer and I asked the barman, I said, “What time does it start?” And he said, “Oh, what do you mean, the drag act?” And I was like, “Wow, that’s really interesting,” because that’s such an historic term now. And actually that’s a completely different thing. They are not the same thing in any way. So when you and I spoke the other day, we had a conversation around… I said, “There’s the individual first and then there’s the disability,” and you quite rightly called me on that and said, “Well, actually I can’t separate those two things. You can’t talk about Andrew without talking about the fact that I’m disabled, so don’t do it like that.”

And it’s things like that, that if we’re just a little bit better at going, “Actually, that’s really interesting. I’ve learned something there,” then that’s great. That’s a very grown-up conversation. What we shouldn’t do is react and fight back and say, “No,” because then you get these horrible videos that you see on YouTube. You could disappear down a white privilege or an ability privilege rabbit warren very, very quickly with people reacting in the wrong way.

Andrew: Yes. I think also though, it’s important to ask somebody who works in any kind of activism. I think the way you do the call-out has to be very carefully crafted for two reasons. One, if you spend your whole day screaming about injustices, either in the online void or in person, that’s not emotionally healthy for you.

Secondly, if you do that all the time, no one’s going to respond to you. If I spent my whole experience of disability activism yelling either online or in person at somebody, everybody would say, “Oh, well. I don’t want to listen to this any more. You’re not giving me solutions. You’re just angry.”

And I think there are spaces where people can just be purely angry. I think that’s fine. But I think if you really want to connect change, you have to… unfortunately, in this society we live in, you kind of have to hold somebody’s hand a little bit and you kind of have to walk them through stuff. Not that I can walk, but you have to hold their hand a little bit.

And I’ve done this with activism for eight plus years now. And for a couple of years there, I went down the angry disabled activist screaming kind of way. And I’m not saying that those are invalid. I’m saying for me, that doesn’t work. For me that made me sick. For me that made me really unhappy.

And so over the last six months, seven months, I pivoted the way I talk about disability to provide tips and tricks for the non-disabled community to take that knowledge and try to use it. So on my Twitter or my Facebook. I’ll put a post about, “Four ways to talk to a disabled person. Four things not to say.” I make it very clear. Like, “Here’s what I think.” And I put that out there, and I’ll say like, “If you’re not disabled and you want help, I’m here for you,” because I think we need to build bridges instead of burning them down.

Mark: I know you’ve been on the show. But The Last Leg show that was born during the London 2012 Paralympic Games had a segment on that was, it was called. “Is it okay?” And it was about helping you understand how disabled people were able to do certain things.

For example, swimmers who only have one arm, is it okay to ask, “How do you not go round in circles?” There’s a lot that we do. And anything that can help someone understand the issue and how to talk about it, and in our case, how to write about it is going to be a positive thing. So on that, and the company, Handi, how close are you to having products out in the world? Just give us a sense of the timelines that you’re working to if you can?

Andrew: We are hoping to have the product itself out by 2021. We were supposed to be in pre-production right now, but Corona happened and the world stopped.

Mark: Which is a shame, because it could have been very useful right now with lots of people being home!

Andrew: I know, exactly! Yes. So what I’m sure will be our second or third wave of whatever this is that’ll come hopefully we’ll have something ready by then, but we’re hoping by 2021 to have product in-hand, or at least ready to be sold. We’re working on just the brand right now and getting the brand up and running and getting people knowing who we are. And I can’t speak too much to the product, because we’re testing and it’s all hush-hush. But what I have been told to say by my sister, the boss, is that we have toys on the market that will blow you away.

Mark: Fantastic. I love that play on words. On that point, Andrew, thank you very much. It’s been a pleasure to talk to you. Thank you.

Andrew: Thank you so much for having me today.

Conclusion

A massive thank you then, to Andrew Gurza for joining me on the podcast. And to recap, what have we learned?

The longer we avoid having uncomfortable conversations, the more uncomfortable they become. As writers, we have the power to smash through barriers and taboos. It’s up to us to start those conversations. We’ve said it before, but if you’re going to write about something, then make sure you’re clued up. Do you want to include disabled people in your writing, and please do, then speak to a disabled person. Talk to as many as you can. You can never be too informed — but you can certainly be ill-informed.

That being said, you can play with the idea of ignorance in your character development. Allow your characters to connect with the idea that they don’t know what they’re talking about and what that might mean for their understanding of the world and their personal growth.

And finally, tapping into the anger or sadness surrounding an issue is not always the most powerful way to tackle it. In fact, sometimes trying too hard to tug at the heartstrings can be condescending. Comedy, however, can allow us to address big issues with a smile on our face — and that, I think, is what Andrew does best, and it’s a good lesson for us all.

Thanks for listening. I’m Mark Heywood. And if you’d like to get in touch, we’re on Twitter and Facebook as @BehindTheSpine. New episodes release weekly. Please like us and review us on Apple podcasts. It really does help.

Up next week, we’ll be in conversation with Kate Davies.

“When I came out, I had no idea what women did in bed. That’s why I wanted to write about it as frankly as I did.”

Goodbye for now. Stay safe, and keep writing.

To listen to this episode of the podcast, visit the link below: www.behindthespine.podbean.com/e/andrew-gurza