Speaker 1:
And if I say yes to allowing you to engage in a sexual relationship with me, I believe it's a big privilege for a non-disabled partner to be entered into that space with me. And so I think consent does go a lot deeper, and I think we need to look at all those other factors, too, when we talk about disability, sex, and consent.
Speaker 2:
I'm Joeita Gupta, and this is The Pulse. Don't talk about sex. Don't ask about it. Don't masturbate. Don't wear short skirts. And most importantly, don't actually have sex. I grew up in a socially conservative country where sex education was a joke. I vividly recall being handed photocopies of the grade seven biology textbook, the chapter on human reproduction being explanation enough. There were disgusted squeals when the girls were shown a sanitary napkin, and there was a nauseatingly long lecture about the importance of grooming for young women. What was missing was a conversation about contraception and having safe sex. There was no mention of sexual violence or consent, and no one brought up disability or queer identity. Perhaps the assumption was that only non-disabled and straight people want to have sex. Today we discuss cripping sex education. It's time to put your finger on The Pulse.
Hello, and welcome to the program. I'm Joeita Gupta. In this two-part conversation, we'll be hearing about an exciting project which intends to create tools to make sex education disability inclusive. Later on in the program we'll hear from Chelsea Jones, assistant professor in the Department of Child and Youth Studies at Brock University. But first, a guest who needs no introduction. I'd like to bring in the creator of Disability After Dark and an activist around sex and disability, Andrew Gurza. Welcome back to the program. It's nice to have you.
Speaker 1:
Hello. Thank you for having me.
Speaker 2:
Andrew, what was your experience with sex education in school?
Speaker 1:
Oh, it's nonexistent for disabled people. When I was in school, I remember watching the birthing video with all the grade nine students as I did, like we all did. And I remember thinking, "Well, but I'm definitely queer. This doesn't really apply to me. Where's something for me?" And then I remember having the gym teacher who taught us about sex ed come over to me multiple times in that class and say, "So you really want to be here? Do you want to go do something else? I don't know if you need this class." And me being 14 and wanting a free period, I was like, "Sure, cool. I'll go do something else. Great." But looking back on it now, I really wish that they had looked to include my disabled queer body in those discussions.
Speaker 2:
And so when you get a little bit older, let's fast forward to maybe when you're in your late teens, 18, 19 20, and that's when a lot of people start to want to engage in romantic relationships, go on dates, and explore their sexuality. Often it's the first time you're living away from home. When you got to that stage in your life, Andrew, who were you able to talk to about your experience?
Speaker 1:
No one, because I was also, I had come out as queer, as gay three years earlier. And so I had that label of being a gay young person around me, and I was like, "Well, I'm going to go explore that. I'm away from home. No one can tell me no. I'm going to go do all these things that I wanted to try." But I had no one to talk to, because I went to school where it was predominantly straight cis people talking about sex. And so even the queer people that I encountered at the time were not disabled then. So I had no one that I could really be like, "Whoa, I'm disabled and I want to have sex. Well, how do I do that?"
Speaker 2:
"Where do I meet people?" even, if nothing else. What were the myths that were swirling around you? Did people just assume you didn't want to have sex or you couldn't have sex? What was happening there?
Speaker 1:
I mean, I wish I could say the myths were in past tense. They're still swirling around today. The myths are that we can't have sex, that we don't want to have sex. That if somebody were to engage in sexual contact with us they would have to become our caregiver. They would have to take care of us. Some people have said, "If I have sex with you as a disabled person, I won't enjoy myself, so why would I?" I mean, all this mythology's been around for so long, long before me, and it will probably persist long after me because we don't talk enough about sexuality and disability. And we don't realize that disability will become a part of all of our stories at some point, so we should be talking about sex and disability now.
Speaker 2:
Exactly. So when we have this conversation about sex and disability and we say cripping sex education, what are we getting at with that?
Speaker 1:
We're saying to put the disabled body and disabled experiences of sex and disability front and center. We're giving disabled people the education they deserved when they were 12, 13, 14, even younger than that. And we're putting the experience of disability as part of an educational model, not just for disabled people, but for everybody to be like, "Oh, we should also be understanding this." For non-disabled people and our peers to be like, "Oh, this is something I should learn, too."
Speaker 2:
How do you negotiate conversations about consent when you're talking about sexuality and disability? Are there special considerations or is the conversation pretty much the same?
Speaker 1:
I think it's different ... Well, not different. It's the same, but it's deeper, because when you're disabled, especially if you have a complex disability like I do, you have to negotiate not just the sexual act, but the preamble to the sexual act. So getting out of your wheelchair, being positioned the right way, having someone take your clothes off for you, having someone help you with pre and aftercare if you need it. All of these things are also negotiations.
So I think consent, when you're complexly disabled, goes a lot deeper. And I think we have to understand that it's not just yes or no like we're so used to understanding it. It's if I say yes to having sex with you, I have to consent to your assistance to get out of my chair and all those things. And I have to make sure you're comfortable. And if I say yes to allowing you to engage in a sexual relationship with me, I believe it's a big privilege for a non-disabled partner to be entered into that space with me. And so I think consent does go a lot deeper, and I think we need to look at all those other factors, too when we talk about disability, sex, and consent.
Speaker 2:
When you think about that someone who could help you undress or someone who could help you prepare for a lover, that someone could be a paid attendant.
Speaker 1:
Yeah.
Speaker 2:
And so does the conversation become a little more complex? Because I think someone who is doing a job may be concerned about doing the wrong thing vis a vis a client who's requesting help with sex-related or associated activities. Are there any additional considerations or is it just like, I mean, helping somebody go to the washroom and helping with toileting or helping with meal preparation?
Speaker 1:
I think it's just like that. I mean, I did a video recently for a company where they wanted me to talk about masturbation and I had to get undressed and I had to show my body and I had to talk to the attendant and say, "Hey, would you mind taking off my clothes and pointing my phone to my body while I film this thing?" And they were okay with it. But I had to have a really long conversation with the management about, "Here's what I need. Here's why I need this. Can they help me?" I think if you're getting a paid attendant to help you, I think the conversations around what makes them feel comfortable are important. I think we can't discount their comfort in this, too, because they're there to do a job. And I think we've been taught and they've been taught as attendants that there's a boundary you're not allowed to cross.
And I think when you start talking about sex and disability, because it's been so taboo, that boundary gets a bit gray and people get uncomfortable. I think paid attendant programs need total training on how to help somebody with sex and disability. But also, we need to sit with those attendant care management programs and all the staff and ask them, "What are your biases around sex and disability?" And let's talk about them. Let's get to your ableism. Let's talk about all that stuff together in a safe space where they can talk about all their feelings before being confronted with a client who wants my help to get ready for sex.
Speaker 2:
Yeah. And when I think back to the way I got sex education, you've heard the monologue of the top, and I think you'll agree with me that the sex ed I got, the formal sex ed I got, was pretty useless. But then I couldn't really turn to my peer group either, because I was the only blind person in the group and everybody else was sighted. So their experience was very different from mine. Do you think there's something to be said for bringing in people with disabilities themselves who've been there done that and experienced sex to be the mentors and the guides and the sex educators for the young, disabled people today who are ready to explore their sexuality?
Speaker 1:
I think it's a requirement. I think it should be mandatory, because without that lived experience, if they're being taught by a non-disabled person about sex, the non-disabled person's going to do their best to incorporate disability, perhaps, but they're not going to know how it feels. They're not going to have that embodied lived experience. And if the disabled person is being taught by somebody who has a similar experience to them, they'll go, "Oh, yeah, I felt that way, too," and they'll open up. Because the kind of sex education we need is not just how to physically have sex. We need sex education around the emotional components that disabled people encounter when they're trying to have sex. So what happens if somebody says something ableist to you in the bedroom? How does that make you feel? How do you deal with internalized ableism in the bedroom when you're thinking about your body and thinking about sexuality? This is the kind of sex ed we need also on top of how to physically have a sexual encounter.
Speaker 2:
Let's play a game. Let's pretend that you've somehow acquired a time machine and you can hop back in time and redo your first sex ed class. So here you are, 14-year-old Andrew, and you're being told, "You know what? You don't need this. Why don't you go have a free period?" If you could do that over or if the school could do that over, how would that experience go for you?
Speaker 1:
They would say, "Class, we brought in somebody with a disability today to talk to us about sex." Not sex and disability, just sex. And this would be taught to everyone, disabled and non-disabled in the room, so that the non-disabled students could also ask questions about the disabled body, disabled sexuality so that from a young age, they are able to confront their ableism. Because what happens, I think, to a lot of non-disabled partners that we encounter later on in life, they don't have an education around disability at all. And they've been taught talking about disability or asking questions about disability is taboo. They've also been taught talking about sexuality is taboo. So then you meet somebody that thinks you're attractive as a disabled person, but they have no framework for how to navigate. So if I could go back, I would have the school introduce a disabled person to teach all of us. And then we can all get the same disability-centric education that I think we need.
Speaker 2:
Do you think when you think about the controversy around sex ed, and I live in Ontario, people have been up in arms about the sex ed curriculum in Ontario. People got upset because they were talking about LGBTQ issues and changed course and reintroduced an older curriculum. When we talk about sex ed being this really, not that sex is controversial, but sex ed itself has become such a deeply politicized issue. How confident are you, Andrew, that a disability-inclusive sex education curriculum is actually possible in this political climate?
Speaker 1:
I don't know if it is. I want it to be. It's a dream that I have of it being a real thing, but because our politicians are not disabled, because the people leading a lot of our stuff don't have lived experience and don't seem to really care what happens to disabled people, I mean, look how we've been treated during this pandemic. So until we get some leaders who actually care and have lived experience about disability, I don't think any of that's going to change.
Speaker 2:
What advice would you give to a young, disabled person who is looking to explore their sexuality for the first time?
Speaker 1:
It's a loaded question. How many hours do you have? I would say to my younger self, I would say don't go in too fast, because you're going to brush up against internalized ableism. You're going to brush up against ableism. All that stuff you've seen in media about what it's supposed to be like is not going to be the same, because they're not talking about disabled people. And when I first had a sexual encounter, I had a certain idea of how it was supposed to go, and it was completely the opposite, and it was full of ableism and full of problematic stuff because all my fantasies about what I thought it was going to be didn't include disabled bodies. So I would tell a young, disabled person to let all that go. Let it be what it is. Be prepared for a lot of feelings afterwards that sometimes don't feel good, but it's still something you're entitled to. It's your body. You're allowed to experience all these things. And be ready to hopefully have somebody to talk to afterwards, because there's a lot of feelings that will come up.
Speaker 2:
Andrew, it's always a pleasure to speak to you. Thank you so much for being on the program today.
Speaker 1:
Such a pleasure for being here. Thank you.
Speaker 2:
Andrew Gurza is the creator of Disability After Dark.
I'd like to bring in Chelsea Jones who is assistant professor in the Department of Child and Youth Studies at Brock University. Now, Chelsea has been listening in to this conversation and can also offer us some reaction and talk about an exciting project that attempts to bridge the gap in sex education. Chelsea, welcome to the program.
Speaker 3:
Thank you for having me.
Speaker 2:
When you heard Andrew talk about his lived experience, what went through your mind?
Speaker 3:
Well, as I was listening to Andrew speak, I was sort of nodding along thinking about our cripping sex education project and thinking about how many of the things that Andrew said, like the prevalence of these myths that still inform policy and programming around sex education. This is so clearly where we're at. And one thing that's happening is that people like Andrew and other activists and community educators are giving us a whole set of new and different programming to look to and learn from and are speaking out about their own experiences with sex education, just like you did at the beginning at the top of this program.
And so we have alternatives. And so this was part of the purpose of our cripping sex education program was to help students tap into those alternatives in ways that are productive for themselves and for the communities that are impacted by this absolute lack of sufficient sex education.
Speaker 2:
So just describe the program to me. What all was involved? And I know Andrew was involved with the project. So tell me a little bit about how Andrew got involved.
Speaker 3:
Yeah. Andrew was involved as were four other community sex educators or people who have a role in developing culturally appropriate sex education for disabled, deaf, and queer folks, keeping in mind that those categories will overlap and exchange in different ways. So along with Andrew, there was Sage Lavelle, Nadia Abdel-Halim, Ricky Vergesse, Fran Odette. And so each of these people came and they spoke to my 78-student class. And my students are third-year child and youth studies researchers. A lot of them have some sort of connection to education. Some of them want to be teachers or they work in schools already or they work with kids in some capacity. And so they have experience with what the current sex education offering is. And many times these students might be disabled, deaf, neurodiverse, neuro queer. They might come from this perspective as well. But to Andrew's point earlier, many of these students also are the non-disabled young people who go into classrooms and have to teach a sourly, a really contentious curriculum, as you pointed out earlier. So they have to go into classrooms and toe the line.
So we put together this panel of activists to talk to students about their own experience, just as Andrew has, and they brought all these different experiences. Sage Lavelle, for example, is a queer, deaf, non-binary sex educator whose first language is ASL. So when they do sex education, it's never English first. It's always ASL first. And someone like Fran Odette, during the panel identified as an elder in the disability community and was able to discuss their decades of experience writing about disabled women's sexuality and other topics. So there was a panel of people who brought a bunch of different experiences in. And then students grouped up and paired with a panelist in order to create a digital sex education tool that would be publicly available. So something outside of the school system that they could turn to when they were working with kids in classrooms or in their community, and also that anyone else, including the activists on the panel, could turn to.
So for example, the students who worked with Sage created a glossary of ASL terms for sex-related slang and for body parts, knowing that there's a gap in the curriculum and that deaf students don't have access to language about sex and gender and consent and these important topics.
Speaker 2:
When we think about sex and when we think about disability, both topics are very taboo. They shouldn't be. But did you encounter any discomfort amongst your students who were being asked to unlearn a lifetime of prejudice, who were being asked to unlearn a lifetime of shame around sex and sexuality?
Speaker 3:
That's a great question. Part of this project involved a reflection component. So at the end of the project, students had to reflect on their experience. And so a lot of what I know about their experience comes from this reflection. And I think what I read most frequently was a sentiment of something like, "I just didn't know." A lot of students have this inherent understanding that something is wrong. They come to the classroom and they know because they work with kids. They see kids who are not represented in the curriculum. They see kids who have little or no support. They see kids who like Andrew are ushered out of the classroom. "Oh, do you want to go do something else?" And they don't quite know how to intervene. They know something's wrong, but they can't quite put their finger on it.
So one of the things that came from their reflections predominantly was a realization that we have language for these instances, language like ableism that helps us understand what is happening and helps us intervene. And so if we can recognize ableism when it's happening, that is a good first step to being able to turn around and say, "Okay, this is ableist. What is the alternative? How can I intervene and how can I put language to this?" So that was a lot of what happened in the reflection was that it was clear students knew something was off. They experienced it regularly, but being able to actually speak to it and act on it was the difference that a project like this I think was able to make for some of the students.
Speaker 2:
You said it was a first step. Where are you hoping to take the project down the road?
Speaker 3:
Well, projects like this, I'll be honest, they require a lot of funding, and we were fortunate to be able to get funding for the project. We hired ASL interpreters. We hired live captioners. We paid students for their work as well. We hired an accessibility technologist. We hired all sorts of folks to help students develop these resources and to make sure that they were developed in such a way that folks like Andrew, folks who are most impacted were leading this development. So this wasn't the kind of co-op project where students come in and quote-unquote "help" some community. We tried to really reverse that quite intentionally to make sure that this was led by activists and that students could follow and learn from activists in ways that really accounted for cultural histories of disability that are also tied up in sexuality, as well as these contemporary experiences that you and Andrew are describing.
All of that takes a lot of funding. So in order to keep the project going, we have to continue applying for funding. We have to be able to pay people for their work, because that is the only way we can do this in a just and equitable form. And so in order to keep the project going, we have to spend a few years developing new funding applications and relaunch in new ways. So that's what it's about. Access costs money. And I think that people don't realize this or don't consider it. But this kind of work, it is important and it is costly. And so the first step in carrying this forward is making sure that we can acquire the funds for it.
Speaker 2:
It's a great point. We don't really talk about how much money and time and effort goes into a project like this or any sort of accessibility, disability-related project. Just as we're talking, we have a few minutes left. I don't want to make the conversation solely about people with physical disabilities. And I want to ask you if during the panel there was some discussion that came up about the particular challenges around sex and sexuality facing those with cognitive or intellectual disabilities.
Speaker 3:
Yes, absolutely that came up. There was one panelist in particular. I think that this was a concern mentioned by all of the panelists. We made sure that intellectual disability was not forgotten or we certainly tried to make sure. But Nadia Abdel Helene is a sex education researcher with intimate experience with intellectual disability, and her group in particular paid attention to this. And so they went ahead and they revised some of the current sex education curriculum in order to be written in plain language and presented in plain language so that it was understandable to many different folks. And one of the things that they were really conscientious of is the use of metaphors in sex education, sort of the birds and the bees kind of stuff.
And one thing that they taught me is this student said to me that many of them in their own sex education experiences had been shown this video ... You can find it on YouTube, and this was the first I'd encountered it ... called the Tea Video. And it's a little animation, and it's a video about consent. And basically the message is if you offer someone a cup of tea and they say no, you don't go ahead and pour them a cup of tea anyway. You respect their no. And for them, this was problematic, because not everyone, particularly people who are identifying as narrow diverse, are going to connect with metaphors.
So they really identified the importance of speaking clearly and directly about sex and gender and consent and these important topics so that nothing was left as a hanging question mark. So that kids and young people can understand what they're being told and have a space where they can ask direct and clear questions and use proper ... Proper is sort of the wrong word, but use the correct words to identify what they need to know rather than relying on metaphors or sugared over expressions.
Speaker 2:
Birds and the bees. Listen, just in 30 seconds, could you let us know where we can access some of these digital resources and tools that you were able to create as part of this project?
Speaker 3:
Absolutely. All of the students have put their tools online. It's a website called crippingsexed.com. And you can also access an abbreviated transcript of the panel that Andrew was on in the Canadian Journal of Disability Studies. And each of these resources are open access and as accessible as they can be online.
Speaker 2:
Chelsea, thank you so much for being on the program. It was great chatting with you.
Speaker 3:
Thank you.
Speaker 2:
That was Chelsea Jones, assistant professor in the Department of Child and Youth Studies at Brock University.
That brings us to the end of our program. If you have any feedback for us, you can write us at feedback@ami.ca. You can leave us a voicemail by calling 1-866-509-4545. That's 1-866-509-4545, and give us permission to play the audio on the program. You can also find us on social media on Twitter at AMI Audio. Use the hashtag PulseAMI. Or you can find us on accessible media on Facebook. Of course, this show is available on your favorite podcast platform and is also available via YouTube. If you are joining us over YouTube, don't forget to like, rate, and subscribe, and you can leave comments down below in the comments section. We would love to read them. And by we, I mean I would love to read them.
Our technical producer for today has been Mark Aflalo. Our videographers have been Ted Cooper and Matt McGurk, and Andy Frank is the manager for AMI Audio. On behalf of the team, I'm your host, Joeita Gupta. Thanks for listening.
