More Sex & Disability

Joeita Gupta:
I am Joeita Gupta, and this is The Pulse. Can people with disabilities have sex? Do they even want to? As an able-bodied parent, how do I talk about sex with my child with a disability? Does the mainstream sex ed curriculum even make sense for a student with a disability? Sex might look different for different people, but human sexuality is universal. Talking about sex is a wide-ranging conversation. It includes discussions about consent, safe, sex, pleasure, and intimacy. Then there are discussions about dating, relationships, and contraception. And no conversation about sex or sexuality is complete without discussing different abilities and gender fluidity. Talking about sex openly is the first step to ensuring that people with disabilities have safe and enjoyable sex. Today, we discuss disability and sexuality. It's time to put your finger on The Pulse.
Hello and welcome to The Pulse on AMI Audio. I'm Joeita Gupta and I'm joining you today from the AMI Studios in downtown Toronto. I am in a V-neck, loose-fitting sweater with long sleeves. It's wine red. Actually, the exact colour is claret. We looked it up, Ted and I looked it up before we started rolling the tape here. And my hair's in a ponytail. And I know a couple of months back we had Andrew Gurza on and Chelsea on talking about sex and disability, and that showed it so well I figured, you know what, let's give the people what they want. Because I love having discussions about sex and disability. We just don't get into it enough, and there isn't seemingly enough information about it on the internet. So let's do another show about sex and disability.
And lo and behold, I heard from the wonderful folks at Holland Bloorview Hospital here in Toronto, and they sent me a pitch for a new online sexuality and disability hub. It's a portal where you can check out videos, you can check out resources, and it's geared toward young people who are exploring their sexuality. But here's the twist, it's all meant for people with disabilities, their caregivers, parents, and educators. So later on in the show, you'll be hearing from Wesley McGee Saxon, who is a Toronto-based artist and one of the contributors to this project. But first, I'm really delighted to welcome back Dr. Amy McPherson, who is the chief scientist at Holland Bloorview Rehab, and is a returning guest here on the program. Dr. McPherson, hello and welcome back to The Pulse. It's so nice to have you back on the program.

Dr. Amy McPherson:
Thanks so much for having me back.

Joeita Gupta:
Dr. McPherson, disability and sexuality, and I said this a few minutes ago, doesn't really get talked about a lot. Was that the driving force behind this new online hub?

Dr. Amy McPherson:
Absolutely. We know that it's often not discussed. We know people find it difficult. Talking about sex is often difficult anyway. And then when a young person has a disability, it adds other sorts of complexities, and people feel very awkward talking about it or they don't even think about talking about it in the first place.

Joeita Gupta:
So what would we find on this online platform or this online hub? If we were to go and click on the homepage, what all are we likely to find?

Dr. Amy McPherson:
Yeah, so for first you should definitely check it out. And so we have a compendium of resources. So we looked across the world to pull resources about sexuality and disability into one place. We started off thinking there weren't many out there, but when we actually started looking, there were, but it was very difficult to find them. They were all on different websites and then through different people. So we've brought them all together into one place in one part of the online hub. Another part is videos that young adults with disabilities, healthcare professionals, parents, and educators, have made about why they think it's difficult to talk about sexuality and disability and their best hopes for this area.
We have some publications that my team has written, and we also have an area of simulations, which is mostly for healthcare providers, and it's videos of actors in sort of talking about sexuality and disability. Not always in the best possible way, because we want people to reflect on what they've seen and heard, and we have some resources there as well to kind of help guide them through their thinking about what might have been done better. And then we also have a few of our home created resources where we didn't find them in other areas, which is really super practical things for parents and healthcare providers, like what word should you use. Here are some sentence starters you can use to get the conversation going. So there's a lot there for many different people.

Joeita Gupta:
I noticed that you launched this particular resource, the Disability and Sexuality Hub, about a month ago now, and it happened to coincide with the International Day of Persons With Disabilities. Could you make a connection for us between International Day of Persons With Disabilities, which is this big global event, and disability and sexuality, which a lot of people would think of as a small-scale and even a private event.

Dr. Amy McPherson:
So, unfortunately, people with disabilities are often considered not to have any interest in sexuality. And we really wanted to raise the awareness that this is an issue that affects many, many people whether they have a disability or not. Now, some people with different disabilities may think that they are or believe they are asexual and that's fine. But I think we were just saying don't make assumptions. Ask people for what they want, ask people what they're interested in, and let's not make assumptions about people with disabilities around their sexuality.

Joeita Gupta:
As I said earlier in the monologue, this conversation about sex and disability is so wide-ranging. You can talk about dating, relationships, contraception, safe sex, I can go on and on. So where's a good place to have the conversation? What is the inroad for a parent or an educator who wants to get the conversation started?

Dr. Amy McPherson:
So I firmly believe we can be doing this from a very young age with children, whether they have a disability or not, when they're younger, the conversation is more about friendship, what makes a good friend, how you can trust people, how you can be a good friend. And it is those building blocks so that when they're older and it's becoming more sort of sexual related, that they have those former, that foundation of, as you say, a sort of consent. But consent as in if someone's mean to you at school or does something you don't like, it's an opportunity to talk about it when they're younger and then keep building on it as they grow older. So that it's usually age-appropriate kind of discussion topics.

Joeita Gupta:
When I was going over the online hub, I was actually taken aback by just how many resources there actually are, because I hadn't actually realized there was quite so much written about disability and sexuality on the internet. Was there something that took you by surprise?

Dr. Amy McPherson:
It did, yes. Actually, when we had first been looking, we really didn't find very much, but we held a connection day a couple of years ago with people from across Canada who work in this area and they were all able to connect us to lots more resources that were out there and we realized our initial assumption was wrong. So what we did was talk to people and say, "So what do you need now?" So we don't need to create a whole load of new resources, maybe some, but not completely from scratch. And what we heard and what we felt was important was to bring them all into one place so that they're much easier to find and improve that accessibility for people who are looking for that information.

Joeita Gupta:
Speaking of website accessibility, I wanted to ask you how this particular website is accessible for people with disabilities. Now I understand you can't make the website entirely accessible to everybody all of the time, but what are some of the best practices you've put in place to make sure the hub is as accessible as it could be to as many people as possible?

Dr. Amy McPherson:
So we work with our graphic designer and our webpage person. And so things like sort of colours, bolding, really making sure that we weren't making the text more complex than we needed in terms of visually. We also went through our health literacy committee that's at Holland Bloorview and they gave us some great feedback on the resources that we had completed around sort of wording and things like that. And then anything we make at Bloorview in terms of products like these tools, we go through an accessibility company who ensure that all of our products can be read by a screen reader as well. So we try and put some layer sort of many layers in to make sure that as many people as possible can access this.

Joeita Gupta:
I wanted to ask you a bit about language because when it comes to sex, we don't really talk straight. We use all these convoluted metaphors and we have all these euphemisms, and it can become very complicated to have a plain-language conversation about sex. And I wondered if you had some thoughts about explaining sex plainly because especially when I think about people with intellectual disabilities or developmental disabilities, it's not just that it's completely incomprehensible, but the jargon might be just downright and accessible. So how do we get around that?

Dr. Amy McPherson:
And I think that comes back to sort of explaining things from an early age, but also so explaining things that are sort of developmentally appropriate for that child, however old they are, but how they're functioning. And as I say, it can be talking about things like how you feel about yourself, if you touch yourself and it feels nice. There are lots of different ways I think that we can really break down some of this around sexuality. Because you're right, a lot of people talk about it in many different ways. I am not a fan of using euphemisms for body parts. I think we should be using correct body parts as early as possible so to again, so kids can kind of build on that knowledge.
So to answer your question, I think, don't wait until they're older. Start using concepts around sexuality, which as I say could be like about how you feel about yourself, who are you attracted to? Do they want to date? And I know it's like young kids, they often come home and say, "Hey, I've got a boyfriend or a girlfriend," and it's a friend in their classroom they sit next to. So I really do think there are accessible ways of starting the conversation and building on that foundation as I mentioned earlier.

Joeita Gupta:
I've been wondering if you had any conversations after this online hub launched with someone affiliated with a school board or with an educator about whether this is something that could be brought into the classroom.

Dr. Amy McPherson:
So we would love to get this into schools and that's certainly our goal. We've worked with sexual sexuality educators who may have some connection with schools, but mostly work in sort of a health context. But certainly, I think all the information here would be relevant to a school and in this dissemination that we're doing, I think it'd be great to kind of connect with some of the school boards and just highlight that we are there and it could be useful. And in the resources, not every single resource is just for kids with disabilities. We've made sure that they all have some connection to it and represent them and are useful, but a lot of the advices is the same for any kid. So I really think that a lot of what we have on that hub would be extremely relevant for the school boards and teachers generally.

Joeita Gupta:
You mentioned earlier that there were some videos on the hub. Do you think you could talk us through some of them?

Dr. Amy McPherson:
So yeah, we have a load of really awesome videos. So we have several young adults with disabilities and we start by asking them what does sexuality mean to them. And when you watch the videos, it's great because it means something different for everybody. And that's what it's like in real life. We don't all have exactly the same perception of what sexuality means to us. So that's a really nice way of kicking them off in showing those differences. We ask them about experiences they've had around sexuality.
For example, one young woman talks about going to her family doctor and the family doctor's asking her about contraception and asking her if she has sex. So she said, yes, I do have sex. And that said, well, we should put you on birth control. And the young woman says, well, I'm not having sex with someone who can get me pregnant. And that completely, they kind of befuddled her family doctor. So using real-life examples we've asked for I think is a really powerful way to understand the thinking out there and try and expand people's thinking.

Joeita Gupta:
I'm South Asian and I think there's a lot of taboo and a lot of fear about talking about sex in the community. And now we know that there's a bit of a wall of silence when it comes to sex and disability, but the disability community isn't a monolith. So how does this online hub deal with the fact that people with disabilities can also be the indigenous or they could belong to immigrant communities or racialized communities, which have particular challenges in discussing sex? So how do you deal with some of those problems and complications?

Dr. Amy McPherson:
That's a really great question, and I can't say we do it perfectly. We've talked a lot about it, and our resources, although some of them are very kind of practical as in words and phrases, a lot of them are also just sort of things to think about. So how does culture affect how you think about sexuality? What messages are you hearing? But then here are some other ways that you could look at it. So it's quite easy to navigate. In our resources we have an image that we use if they're particularly easy reading. So for some communities that might be helpful, and really acknowledging that culture does play a role, but we don't really get into more of the mechanics of sex.
So it's really about here are some words, here are some thoughts, reflect upon them. If you are not getting this information from parents, then here are some resources that you could read on your own to help educate yourself and maybe start a conversation with your parents. We know it's hard, but there are sort of lots of different ways on the online hub that we hope people would engage with.

Joeita Gupta:
I know the hub is only about a month old, but what are you hoping to see in its future? How do you hope to expand it down the road?

Dr. Amy McPherson:
So one of our sections that I didn't mention actually is for events, and we really want to publicize some of the events we're going to be having like seminars and things like that so that we can reach more people and educate more people. I'm also actually working on another couple of projects. One is a book on sexuality and disability and identity for preteens. And we are just completing that and that will go on the hub. And that's something that young people can look at either on their own or with their parent. We made them very much with parents in mind. We have consulted a lot with parents on all of the different areas of our hub. And I'm also running a project where we are connecting experts in sexuality and/or disability across Canada and trying to connect people and make this network. And so that would be great to kind of roll into the hub as well about getting people connected to people in different parts of Canada as well, who have expertise in this particular area.

Joeita Gupta:
It really sounds like the hub is the first of its kind in Canada. Would it be fair to say it's all also the first of its kind in the world?

Dr. Amy McPherson:
I would like to say yes. We haven't found anything like this. There are lots of, if you put disability and sexuality in Google, you know get things that pop up. But we haven't found anything that says kind of well-rounded as this that has so many different kind of areas or ways of approaching the topic. So there are things out there for resources, but not necessarily resources for multiple different audiences.

Joeita Gupta:
Well, where can we find the hub online?

Dr. Amy McPherson:
Hollandbloorview.ca/sexuality. And come and visit. We always welcome comments and thoughts. There's an area where you can add your resources where you want us to consider a new resource. But yeah, come check it out.

Joeita Gupta:
Well, we'll certainly have to check it out. Dr. McPherson, thank you so much. It sounds like such an amazing resource and so long overdue. Really appreciate that you came and talked to us on the program today. Thank you so much.

Dr. Amy McPherson:
Thanks so much for inviting me.

Joeita Gupta:
That was Dr. Amy McPherson, chief scientist at Holland Bloorview Kids Rehab. In the time we have left on the program, I'm going to bring in someone affiliated with the program who was able to voice some of the videos and provide some input into the design of the hub itself. Wesley Magee-Saxton is a youth and a Toronto-based artist, and has been a longtime contributor to the Disability and Sexuality Hub. Wesley, hello and welcome to The Pulse. It's great to have you with us today.

Wesley Magee-Saxton:
Hello. Thank you so much. It's a pleasure to be here.

Joeita Gupta:
So Wesley, how did you get involved with this online portal, which deals with disability and sexuality? What is it that drew you in?

Wesley Magee-Saxton:
So that's quite the story. I was a client at Holland Bloorview from 18 months until I turned 18. I'm 23 now so I've been graduated for a while or rather I'm about to turn 23 on Tuesday. But how I got involved with the Hub was I'm a working actor in Toronto and one of those things is a voice actor. And Dr. McPherson reached out to me to ask if I would do some narration for some of the slides on the hub. And I was very, very excited by the project because gender and sexuality is a very, very important intersection to me and was very excited by the resource. So immediately at any opportunity I jumped on to help where I could.

Joeita Gupta:
You said you were very excited by the program and that gender and sexuality is a really important intersection for you. Why is that?

Wesley Magee-Saxton:
Well, I'm a non-binary person, and I am an electric wheelchair user. And it's been quite a journey because I just realized I was queer about a year-and-a-half, two years ago. And that might have happened a lot sooner, and I might have noticed signs a lot sooner and been given language and descriptors a lot sooner if I had a resource like the Hub growing up. Sexuality and gender was always a difficult topic for me to engage in because of how the public school system handles health classes. As a person in an electric wheelchair, I was able to step out of gym class, but unfortunately, that also meant that I was stepping out of health classes. And they did have a public health nurse come in to do classes with the students that step out.
But even within those classes, I felt that they were very lacklustre. They didn't really know how to talk to teens and youth about sexuality and gender when you're disabled. They were not very well-equipped to handle that intersection in my opinion. So I'm extremely excited about this resource that Holland Bloorview is creating because I will tell you right now, it would've saved me quite a lot of trouble and journey and questioning when it came to my own journey regarding sexuality and gender.

Joeita Gupta:
So you're saying that the public health education system really didn't help you figure out your sexuality and of course, there weren't a lot of people you could talk to about your disability. So how then, as a young person, did you figure it all out?

Wesley Magee-Saxton:
It was quite a journey with a lot of ups and downs. Unfortunately, that journey did involve some personal trauma because I didn't feel safe and well-equipped to talk about that, to discuss. And also, my parents didn't necessarily have the resources that I'm sure they would've liked to discuss sexuality as it relates to disability with me because the resources just didn't exist. So I kind of had to figure things out as I went through my teen years and becoming a young adult and there were a lot of moments of joy within that. But there were also some unsafe situations which again, could have been avoided with a more guided or curated experience to the intersection of disability and sexuality.

Joeita Gupta:
Do you have any thoughts about who might benefit the most from this online portal? Is it meant for young people exploring their sexuality? Is it meant for educators or parents? Who would you say is the target audience?

Wesley Magee-Saxton:
Primarily, from what I have seen, it is developed mainly for youth and their parents or guardians. But there is no reason why educators or folks in the health system could not access it to gain resources or tips for conversation as well. I'm very excited by the fact that it includes both youth and their guardians as well, because I believe equipping parents and families with the resources to talk about it is just as important as equipping youth themselves.

Joeita Gupta:
I feel like dating sites and the ability to seek relationships on the internet has made life a little bit easier for people with or without disabilities, but it's also made things quite a bit more complicated. Does this resource, the online Disability and Sexuality Hub, try to address some of the intricacies of seeking love, relationship, and advice about sexuality on the internet?

Wesley Magee-Saxton:
Well, it's funny that you asked that because that was how I found my current partner and we met on an online dating app. And I will say the hub itself is a fantastic step in the right direction, a fantastic baseline. But if I had to say one area where the hub could be improved, maybe a next step in the project or a future endeavour was to delve more into the nitty gritty of how necessarily physical mechanics of sexuality was working or disclosure, depending on what your mobility is like, what dates can look like, how to talk about disclosure of disability in a relationship, when to do that. When are you comfortable doing that, that type of conversation and engagement. I believe it is there in the hub, but it could be expanded upon.

Joeita Gupta:
If you were to encounter a young person with a disability just embarking on the journey that you've now taken for many years exploring their sexuality and with questions that they want answers to, what advice would you give them?

Wesley Magee-Saxton:
I think there are two main primary pieces of advice that I would give. Firstly is do not see yourself as a burden in the relationship, either from the emotional connection side of things or even during the physical practice and physical intimacy. Do not see yourself as a burden or someone or something that someone else has to cater to. The physical act of intimacy may look vastly different than what you expect, but I guarantee you no matter what your physical situation is, that you will have things to bring to the table.
And then the second thing that I would sort of jump off of that with is do not settle for the first person that shows interest. I've had experiences where folks have thought they could take advantage of me both emotionally and physically because of my disability. And I grew up sort of thinking that that was the best I was going to get, that I would sort of have to settle for that. And my current partner has shown me the exact opposite of that and shown me a relationship where I feel very fulfilled and very safe and able to talk about personal trauma. And my partner is also disabled, so that helps in terms of mutual understanding there. So just to reiterate, do not jump at an opportunity where someone doesn't treat you very well or doesn't acknowledge that you are a fully autonomous person. It might take a little bit longer, but you will find someone who gives you that relationship that you may have been really wanting.

Joeita Gupta:
That is such a great advice, and I wish I'd had that advice when I was younger. I might have saved myself a lot of heartache. Wesley, we've only got a couple minutes left. I really want to make sure we spend those few minutes talking about some of your art and some of your work as an actor. Can you tell me a little bit about what else you're involved with besides the Holland Bloorview online portal, of course.

Wesley Magee-Saxton:
Oh my goodness. Right now, I am currently writing a standup comedy set for myself called This is Not Standup Comedy. And I am currently working on seeking representation, so I'm emailing out to agencies, all that sort of thing. And I'm also doing my own personal writing project with my organization, Forge Ahead: A Party to Access, which is an organization I co-founded, oh my goodness, back in the winter of 2020, I believe. I'll have to double-check that, it's been a while. That focuses on uplifting disabled and queer-focused content for tabletop role-playing games like Dungeons and Dragons. So I've got a bit of a full plate right now, but I'm always looking for more.

Joeita Gupta:
Well, I have to say, it sounds like you're keeping very busy, and that you've come a really long way in exploring your sexuality and making those connections with your disability and just being comfortable in your own skin. Wesley, thank you so much for speaking to me today on the program. It was great to have you with us.

Wesley Magee-Saxton:
Thank you so much. It was a great time, and I'm happy to be here.

Joeita Gupta:
That was Wesley Magee-Saxton, who is a contributor to the Holland Bloorview Rehab Disability and Sexuality Online Hub. It was great to be able to talk to Wesley and to Dr. Amy McPherson about this important resource. We'll put a link down in the description and you can check it out there if you're interested. And we'd love to get your feedback. You can always leave us a comment down below. Don't forget to subscribe to the podcast or to the YouTube channel, and of course, tell us about your experiences exploring your sexuality. Tell me a little bit about whether you found the resource useful, whether there are things that are missing that you'd like them to add. Of course, I'd love to get a conversation started. So you can always find me on Twitter at AMI audio. Use the #pulseami. Actually, you can find me on Twitter @joeitagupta. If you just want to reach out to me directly, I will write you back.
You can send us an email at feedback@ami.ca. And you can always give us a call at 1-866-509-4545. That's 1-866-509-4545. And don't forget to leave us with permission to play the audio on the program. We have to wrap it up for today, but it's always interesting to talk about disability and sexuality. Until next time, I've been your host, Joeita Gupta. Thanks for listening. The videographer for The Pulse for this week is Ted Cooper. Mark Aflalo is the technical producer, and Andy Frank is the manager for AMI-audio. Thanks for listening. Enjoy the rest of your day.