On a rainy Toronto weekend last November, youth from around the world gathered for NoTimeToWait, Canada’s largest youth-HIV event, presented by LetsStopAIDS, Canada’s largest youth-led HIV charity. The Realize Podcast sat down with four vibrant young activists to find out why they care about the health issue; their relationship to it; the holes and flaws in current education about HIV and AIDS - and the battle against stigma being faced still by countless people with HIV or AIDS. The four activists share their personal and moving and inspiring stories about why they do the very good work they do.
On a rainy Toronto weekend last November, youth from around the world gathered for NoTimeToWait, Canada’s largest youth-HIV event, presented by LetsStopAIDS, Canada’s largest youth-led HIV charity. The Realize Podcast sat down with four vibrant young activists to find out why they care about the health issue; their relationship to it; the holes and flaws in current education about HIV and AIDS - and the battle against stigma being faced still by countless people with HIV or AIDS. The four activists share their personal and moving and inspiring stories about why they do the very good work they do.
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Thank you to our guests this episode for their expertise and generous sharing of their stories.
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Credits:
Writer, producer, host: Shaun Proulx
Audio and video editor: John Mackie
Graphic design: Alexandria Ditner
Special thanks to Tad Chmiel and Alex MacLeod at LetsStopAIDS for their great assistance in making this episode happen.
Executive Producers: Roger Mussellman and Janet London for Realize Canada
The Realize Podcast is sponsored by the Government of Canada.
Shaun
This episode contains conversations about sexual violence, HIV stigma, and mental health struggles, including suicidal thoughts. If these topics are difficult for you, please take care while listening. If you or someone you know needs support, we've included resources in the episode notes.
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Ahmed
The doctor told me that you are HIV positive. And they started blaming me and telling me that you should not have sex for the rest of your life.
Shivam
I remember when I first went to my first Pride parade, my dad was really upset and there was actually an argument that happened. And so really now seeing him transform is something I want to do, not with my parents, but parents of all religions and cultures.
KC Barron
A lot of the research within it is for white women, but then there's also so many different people that are not white women.
Emma
I kind of thought of Canada as like this super like progressive place, but it's been interesting to learn about like people from northern Ontario, people, there's a lot of people from Saskatchewan who came, a lot of people from Manitoba. It's been interesting to learn about like the disparities in Canada itself.
Shaun
The intersections outside the infamous Masonic Temple in Toronto, standing in its renaissance revival glory, are as busy as ever on a wet late November Friday morning. Inside the Masonic Temple it feels twice as busy. This is the site of No Time to Wait, Canada's largest youth HIV event, presented by Let's Stop AIDS, Canada's largest youth-led HIV charity.
Let's Stop AIDS has been accelerating the global HIV response since 2004, when a then 15-year-old Shamin Mohamed Jr., alongside his peers, realized many of his classmates were going through challenges and no one wanted to talk to them about them, such as their sexual lives. He decided to set up a charity. He was underestimated at first, but Shamin didn't cave and today Let's Stop AIDS has over 15,000 volunteers and 10 global projects.
Since its inception, the organization has impacted more than 300,000 youth worldwide. I'm Shaun Proux. Welcome to the Realize podcast, nurturing potential, inclusion, and belonging.
It's the podcast dedicated to exploring the strength, adaptability, and determination of individuals facing the ever-changing landscape of episodic disabilities.
Today we're diving into a critical issue many mistakenly think is over, HIV and AIDS, and the new generation of incredible young leaders stepping up to lead the charge. At No Time to Wait, I spoke with four passionate young advocates who are leading the charge for change.
They are educators, activists, and change makers who refuse to accept the status quo. In this episode, we'll hear their stories, insights, and calls to action, because when it comes to HIV and AIDS, the fight against it isn't over. These bright lights are refusing to let stigma, misinformation, and inaction define the future of HIV and AIDS.
Each of these advocates has a unique story, a powerful voice, and a relentless drive to make change happen. In this episode, you'll hear firsthand about the barriers they're fighting to break, the communities they're empowering, and the urgent need to shift the conversation around HIV and AIDS. Because this isn't just a medical issue, it is a human rights issue, education, and justice issue.The message is crystal clear, there is no time to wait, and after this episode, you'll understand why.
I sat down with Ahmed first, a young advocate whose journey is one of resilience, activism, and turning pain into purpose. Ahmed was born in Syria, moved to Turkey, and later Egypt, where a traumatic experience changed the course of his life.
What happened in Egypt led him to become a powerful voice in HIV and AIDS education, fighting stigma, and empowering youth to have informed conversations about sexual health. Ahmed's story is one of transformation, and I hope it inspires you as much as it does me.
Ahmed
First, thank you Shaun for inviting me and hosting me. It's my pleasure to talk about my story and share insights about how I became very involved in activism. So yes, as you said, I'm born in Syria, then moved to Turkey.
In Turkey, I was still discovering my sexuality, and when I moved to Egypt, I wanted to have sex with other people to know if I like it or not. And in my mind, I thought that safe sex is only with using condoms. And then I agreed with someone that on having sex, I went to his place, we started like having sex, and then we agreed on condom.
But during the sex, he took the condom off and kept having the sex, I noticed in the end. And then I told him like, this is condom less sex, I didn't give you consent to have sex without condom. So I went to a clinic to have HIV test.
Shaun
How old were you at the time?
Ahmed
17 years. Yeah, I was 17 years old, and I didn't know anything about HIV or STIs.
So I did the blood tests. And then the doctor told me that you are HIV positive. And they started blaming me and telling me that you should not have sex for the rest of your life.
He was he didn't understand it was without my consent. He didn't explain to me what is HIV is he just was very homophobic, I felt in a way. He's not offering me the support I needed that moment.
So after that, I started looking online, what is HIV? Is there a treatment? Is there a cure?
What can I do? And I left the clinic crying, like very, very heavily crying, not knowing what to do. The only thing I looked online was, what is HIV?
Shaun
It must have been terrifying for you.
Ahmed
Yeah, yeah, absolutely. Like, I'm still remembering going from the clinic, clinic to the stairs, and like going down, stopping at the stairs crying, and then trying to understand what he told me. He was like, your life is over.And I started the first thing, the first thing came to my mind after thinking about what is HIV. It was how to disclose it to my family. Like I was worried more about how to disclose it to my family more, more than about my own health.
Shaun
A very conservative family, I imagine.
Ahmed
Yeah, I come from a very conservative family. I'm Muslim. And yeah, in my head, I imagine that if I tell my family that they would treat me badly because of the stigma, like after I started reading about it, I saw also like many resources, some of it very conservative, some of it very open-minded.
But I didn't find anything for youth that represents me. Like I didn't feel belong to anyone. I went back home, I didn't tell anyone.And I only told my older sister. I told her like, this is what happened with me. And she was like, don't ever tell your family.Like, it's AIDS, it's something that they're going to know it's through like sexual interaction. And I wanted to do the test again. But during this 10 days, it felt like 10 years, like waking up, looking for information.Before I sleep, I look about what is HIV, like I didn't know anything about it at all. After that, I went like after a week for my test for HIV again. And the results came after a few days with negative.
So at that moment, I was involved in activism in gender and sexuality, but not in HIV awareness and knowing anything about STIs and about sex education.
Shaun
So your first test was a false positive?
Ahmed
Yes.
Shaun
Very lucky.
Ahmed
I don't know if I consider it lucky or not. I think that it happened for a reason. And at that time, I didn't mind if I'm going to continue my life living with HIV.But honestly, I was worried about the stigma. Like, especially in the Middle East, we come from conservative culture, religion as well. And we have like misconceptions, a lot of misconceptions.
One of them is that if you are gay, and you get HIV, so that means God banished you. So during this 10 days, I started thinking like also of committing suicide, not because of HIV, like because of thinking continuously about the stigma.
Shaun
So what changed for you? Obviously, the news was good news. How did that change things for you?
Ahmed
At that moment, when I knew that I'm HIV negative, I decided to advocate for youth and people who are living with HIV. Because I experienced the complex emotions people go through, the anxiety, the stress, the worry about disclosing it to their family, their friends, acceptance, finding resources.
Shaun
Advocating there must be a whole different world with the stigma so different and so heightened there. What's advocating there like?
Ahmed
Advocating like it's, you know, for me, it's become my passion. Like it's bringing me... You're here now.
The largest, Canada's largest HIV event. Yeah, absolutely. Advocating for them means that I'm able to raise my voice and talk bravely without worrying about judgment or stigma, because U equal U.
We got to a point where undetectable equal untransmittable, and there is zero chance of transmission. But we are still dealing with the stigma that's affecting us. At the beginning, after that, I decided to attend more workshops to understand about HIV, STIs, about harm reduction, safer sex practices.
How can I learn this information, knowledge, and tools, and use it for my own health, and at the same time, encourage my friends to ask questions openly, because it's a very sensitive and taboo topic for many people. It depends on their absolutely background, but I find that people from my community, we don't talk easily about these topics. We stay, we try as much as we can to not talk about it.
We started talking about having workshops, learning more, and educating my friends and youth. I have conducted over 50 workshops in high schools, universities, and organizations about HIV, STIs, harm reduction, mental health. I found out that it's very helpful.Like, it encouraged students and youth to speak without fear or shame of their identity or of having sex.
Shaun
What's the thing you hear the most from your peers, from youth? What's the false premise that you hear a lot of?
Ahmed
I hear a lot of, like, in our workshops, our peer-to-peer workshops, we do two workshops. Our first workshop, it's very comprehensive, very educational, but through games, interactive games, and we talk a lot about, like, what is PrEP, Doxilab, harm reduction strategies, safer sex, and in our workshop, too, we focus the most about the stigma to understand where the stigma is coming from and how we can move forward in inclusive community where everyone is involved and not judged or make them feel less.
So, in workshops, too, when we talk about the stigma, I find a lot of misconceptions, such as, like, sharing food with people who are living with HIV, or if someone disclosed about their status, we should isolate them because they are afraid. But also, I found that these ideas are coming from their parents, the community, the society. So, in order to erase this stigma, we need to raise awareness, and that's where my job comes.
When I talk with them, I give them a safe space, inclusive, where they can ask questions without hesitation and understand more where these ideas are coming from, because, like, they grow up learning from others' ideas, but not their own ideas, and that's what I do.
Shaun
You want critical thinking. Yeah, absolutely. What's the importance of a conference like No Time to Wait?Why is this important?
Ahmed
It is important because it's the largest youth HIV event where youth can understand more about what is HIV, what is PrEP, connect with other activists globally, and become a leadership in their community. You know, now, more than ever, we need more leaderships and youth involvement, because our involvement is crucial in the HIV epidemic. Especially, I have read, like, many articles stating that with the sessions we are doing with providing peer educators with the tools to educate their peers, it is very significant.
It's significantly improving the knowledge of the peers, and that's why I think this event is important to give the youth the tools, the power, and encourage them to become a member of their community.
Shaun
You are a light, and we're really lucky to have you doing the work you do. Thank you so much.
Ahmed
Thank you so much.
Shaun
I appreciate you coming on today. I appreciate you. Really good work.I know you've got to run and moderate the panel. Now he doesn't stop. Thank you.
It's a fascinating story, and you took something that was awful and turned it into something magical and helpful that changes people's lives, so thank you.
Ahmed
Yeah, thanks so much, and I believe that what I have learned from this traumatic and painful experience because of the way the doctor treated me, not because of him telling me you have HIV positive, but because of the way he treated me, that I can turn my pain into a powerful tool and use it to take care of my mental health and encourage others to do the same.
Shaun
You're amazing.
Ahmed
Thank you so much.
Shaun
Ahmed's journey is a testament to the power of education, community, and resilience. What started as a painful, isolating, and horrifying experience became the foundation for his advocacy, helping young people access the knowledge and support they need to make informed choices about their health. His message is clear.
Education is the antidote to stigma, and there is no time to wait when it comes to empowering youth in the fight against HIV and AIDS. If Ahmed's story moved you, I encourage you to learn more about Let's Stop AIDS and the work being done by the young leaders around the world. You'll find links and resources in the episode notes.
Now I want you to meet Shivam, a dedicated advocate with Let's Stop AIDS. Shivam first joined the organization as a high school student looking for volunteer hours, but soon realized how deeply the issues of HIV stigma and education resonated with him. Over the past four years, his work has evolved from learning to leading, challenging harmful stereotypes, breaking down cultural taboos, and inspiring the next generation of HIV advocates.He'll tell us more and also explain the unique theme this year of No Time to Wait, Deblur.
Shaun
I'm here now with Shivam, who has been with the organization for some time now, haven't you?
Shivam
I have been with Let's Stop AIDS for over four years now.
Shaun
How did that all begin for you?
Shivam
So it all began with like volunteer hours, right? So being part of a high school, we're required to get these 40 hours of community service, right? And so I was interested in going into health sciences, exploring the humanities and the public health, and so why not just start off with joining a non-profit such as Let's Stop AIDS?
And so I joined, I thought I would be tasked with doing sort of like something you'd do at like a food bank, right? So like moving stuff around, storage, but it was amazing to see how they were able to give an opportunity to youth to get involved with these projects, so get decision making, come up with their own ideas, and it was really wonderful to see.
Shaun
Did you care about the issue before you got involved, or did you care more after you got involved?
Shivam
Yeah, it was definitely after I was involved. Starting, you know, we're sort of stuck in these high school, sort of this echo chamber, and here we meet and interact with our friends and our peers, and the words that they say sort of become this commonality, right? And these stereotypes that are exhibited within these conversations, it seems fine at first, but when I started to get involved in my work at Let's Stop AIDS, I started to get introduced to all of these stereotypes that were sort of wrong, and at that time it felt right, right?So when...
Shaun
Like what? What kind of stereotypes?
Shivam
Yeah, so just the words that people would say, so like even describing anything with a negative connotation, like, oh that was AIDS, or you know, sort of these things that terminologies that my peers said, going off that, and you know, that was something that was really common that looked fine, but after joining, after seeing the problem firsthand, after doing workshops, after going around to all these different places and seeing, wow, this is an issue, and really going back and confronting these problems, it was definitely after that I learned how much of a problem this was.
Shaun
So this sounds like the sort of final frontier right now is stigma and stereotypes. Do you know anyone who's HIV positive?
Shivam
Yes, I do, yeah. So it was actually at the AIDS conference where I met someone who's a doctor who was diagnosed with AIDS, and it was at this conference that when I met her, she spoke a lot about when she was young especially, how she had to deal with the stigma, especially going to then and now with sort of not as much as the focus. I know now within our education there still needs to be a higher focus, but even back then there wasn't as much, and she used to speak to me on how she felt, how she felt secluded from her world, and even talking to people.
I think it's really important that when we look at, you know, times and how people feel, especially in terms of their mental health, how something like this, how coming out with your diagnosis could really impact your own mental health, and sort of when we think about, oh, will other peoples accept me because I'm diagnosed with HIV and AIDS? I mean, it was something that impacts a large amount of the HIV positive community.
Shaun
You were telling me before that what you were taught in school, what you were taught even by your parents, ended up being wrong. Tell us a little bit about that if you could.
Shivam
Yeah, so starting from a young age, I've never really gotten that sex talk. I think within, I'm specifically South Asian and sort of in the Hindu religion, and within the Hindu religion, sex is not something that is sort of not talked about. I mean, it is expressively talked about within our scriptures, but in terms of my family and how they spoke to me with sex, it was always something that was shunned about, nothing that was, it wasn't talked about as much, and so now working with these organizations and now conducting these workshops within high schools, it really is, like, I remember when I first went to my first pride parade, my dad was really upset, and there was actually an argument that happened, and so really now seeing him transform into now being able to send me to conferences in Munich, for example, right, it was really to see a great transformation in that is something I want to do, not with my parents, but parents of all religions and cultures.
Shaun
So you brought what you were learning back home to your family, how did that go over? In terms of, like, what was their reaction when you came in and you retaught them?
Shivam
Well, I wouldn't say it was, like, a one-step process. It happened over time, so I joined, as I said, four years ago, and so just involving, continuous involvement within this work and coming home and telling them all about my experiences, how I changed, you know, a kid's day when doing these workshops, and to show them that, yes, sex is something we need to talk about. If we don't talk about sex, it is the reason why HIV rates are going so high, and why youth are still confused.I mean, if you've looked at the Sex Lives Report, I believe only one in every ten of our youth do not, cannot fully explain what U equals U is, and I think that when I go back and when I talk to my parents about this work, and the work that I do with Let's Talk AIDS, it's sort of whatever their parents told them, it's sort of this, like, catalyst, this chain reaction, right? Whatever their parents told them, whatever their parents told them, so now if I break that stigma with my parents, and now when I pass it down to the generations, it'll be something that has a positive connotation, sexual education, and it won't be seen as something that is shunned.
Shaun
Do you feel the average person your age knows and understands about the earlier years of the AIDS epidemic, when it was killing people left, right, and center, and is there an appreciation for that?
Shivam
Definitely, I would say definitely not. Going back to my high school, sort of, I'm still in high school, but looking at what our teachers taught us, it was just hundreds and hundreds of slide shows of basic, just like, what is HIV, what are STIs, but, you know, this did lack some engagement, but going really back to the times in which HIV was rising, sort of, this time, it wasn't discussed about, and it was only until I did some extended research that I figured out about it, and so I think our school curriculum is already lacking in this area, but we don't go as far as going back into the history of the HIV-AIDS epidemic.
Shaun
When you do the workshops that you do, what kind of stigma do you run into?
Shivam
Yeah, so there's just a lot of stigma in terms of, especially, number one, being, like, how many youth are just scared to talk about sexual education, so dismantling, working with that, making sure everyone's okay with speaking about it, right? There's, in terms of the stigma, it's more cultural, so, as I said, within my own school communities, I currently reside in Brampton, so there's a huge amount of South Asian population there, and within the South Asian population, what I see is when I do workshops at these high schools, lots of the youth are really, they sort of have a misinterpretation of sexual education and sexual health, and so the stigma that we want to break there is that cultural and familial, sort of, taboo connotation that they attach to it.
Shaun
Why do you think there's fear around talking about sex with youth?
Shivam
So there's definitely lots of fear, and fear attached with it, because, especially when, I would say, with, especially with youth, what youth is, is that youth now go around engaging in lots of these behaviors, and I think when, when it is taught to kids with this fear, it's not, sort of, taught in an engaging way, correct? So when our schools teach it to us, there's lots of fear of making sure that there isn't something that is said otherwise, and so when schools teach us, it's taught in this, sort of, disengaging manner, because, first of all, schools, they don't want to, I would say, participate in anything that is too, too extensive, so to the point where, you know, I know specifically how hard it is to get workshops into these schools, and so there's a lot of fear from these school boards on, like, okay, what will these workshops teach these kids, and so that the fear is really involved with my own experience with these school boards, how they're scared to just introduce the content that we have to the children.
Shaun
Talk to us about the theme of this year's conference.
Shivam
The team, DEBLUR? Yeah, so definitely there's a lot of work with DEBLUR. I mean, my friends still ask me to this day, Shivam, do, do you, do I get HIV from, from, do I get HIV from, from our own spit, right?
And so hearing questions like that is, is something that DEBLUR looks to focus on. So when we blur the stigma, we need to blur these misconceptions. It essentially works to DEBLUR the, DEBLUR whatever is unknown about HIV, right?
So when we go to DEBLUR something, we want to make it more easily understandable. We want to make sure that all the youth that come out to these conferences feel engaged, feel out there, to, to be able to go out there and educate people, and that's sort of my main focus in coming to these conferences. I hope to inspire, and I hope to inspire this work in HIV advocacy, and not myself, but to the youth that I target.
I will hope that they would be able to look at me like, wow, we should really do something about HIV advocacy. I want to go around to schools. I want to do these workshops too, and sort of beat these stigmas, and that's what I mean by DEBLUR, to go against these misconceptions.
Shaun
Why is No Time to Wait an important conference?
Shivam
No Time to Wait is an important conference because here we can see lots of panelists, especially young panelists who come in. I remember when I first came to my, came to No Time to Wait, there's lots of high school students, there's lots of youth, and so when we have No Time to Wait that is specifically for this youth, and specifically for this demographic, what we do is we target, we bring like-minded individuals, like-minded youths all together, and we have them network, and when through this networking they can learn, wow, there are people that support me, you're not alone in this, in terms of HIV advocacy, you're not alone, and you have people to go to, you have the simple knowledge such as PrEP, PEP, ART, and ART, and to learning all of these simple, just simple definitions as youth is, it can be mind-blowing because it's not, it's not properly taught in schools, and so when you have engaging conversations, engaging workshops, engaging panelist discussions, through these sort of activities, it becomes more easily understandable for the youth, and I think that's why it's so important to have conferences like this.
Shaun
That was Shivam, a passionate advocate working to break down HIV stigma and push for better education. You heard Shivam say he runs into people who don't even know what U equals U means, and I want to make sure you know what it means because I also run into a lot of people, including many gay men, who don't. U equals U stands for undetectable equals untransmissible.
If someone who is HIV positive has an undetectable viral load due to the success of the drugs they're taking, which means that the amount of HIV in a person's blood is so low it doesn't show up on standard tests, they cannot transmit the virus on to others. It's a miracle of a fact that has been proven scientifically. And there's your learning for the day.
Shivam reminded us education and open conversations are key to empowering yourself and changing minds, not just in classrooms, but also at home and in communities. And we'll be right back.
Mental health, arthritis, some cancers, HIV, long COVID. These are just some of the countless examples of episodic disabilities. Episodic disabilities are chronic health conditions characterized by fluctuating degrees of illness and wellness, and they impact over two million people in Canada.
That's why there's Realize. For over 25 years, Realize has been fostering positive change for people living with HIV and other episodic disabilities. For more information about us, visit realizecanada.org.
Shaun
Welcome back. We've been speaking to the new generation of young leaders in the fight against HIV and AIDS, looking at the face of the issue through their eyes. Next up, we'll speak with KC Barron, a young advocate who became involved with Let's Stop AIDS after realizing how much critical information was missing from his own sex education.
I'm sensing a theme emerging here. As a transgender man, Casey's experience highlighted gaps in inclusive and comprehensive education around HIV, STIs, and sexual health. He's now working to change that by educating his peers and pushing for reform.
We're talking about why this issue matters, the reactions he gets from other students, and what needs to change.
Shaun
So KC Barron, nice to finally meet you. I'm impressed by the spectacle going on out there. The opening ceremonies are so great.
I love the performances that I saw so far. I come here as a 56-year-old man who witnessed the horrors of AIDS at its worst, the epidemic at its worst. And so I remember why I got involved, right?People were dying. My friends were dying. We were all at risk.
And now it's such a different world. We've got a one-a-day pill. We've got PrEP.We've got PEP. We've got, you name it, we're covered. And so I wonder what drives a young person like yourself to come here and get involved in the HIV-AIDS cause?
KC Barron
Well, to be honest, it started with sex education. So for context, I'm transgender male. So throughout sex education, I did not learn about identity with LGBT, and I did not learn in thorough depth about STIs and AIDS and HIV.
So that drove me to join Let's Stop AIDS. And then we did a sex education campaign where we pushed for a comprehensive sex education reform. So pretty much making it more accessible, more inclusive.
Shaun
How did you know what you didn't know?
KC Barron
What do you mean by that?
Shaun
Well, you said you didn't get education in things like STIs and things like that.So how did you know you were missing something?
KC Barron
Pretty much I found out because it was around like grade seven or so when I had to go to the internet to find out more about, especially with female reproductive system and stuff like that. I had to go to the internet and be like, what does this mean? What is this?How do I stop this? That kind of stuff.
Shaun
Why do you think this was left out of your sex education?
KC Barron
I think, first of all, I think it's just outdated.
Shaun
What's outdated?
KC Barron
Information. So a lot of the stuff was like 80s, 90s information.I remember one of the topics that we discussed that they tried to talk about, but they didn't have it, is they had like, for me, I had to go to like female sex education. So they showed like a photos of vagina and stuff like that. But then they were like, it looks different for a black woman, but we don't have that picture because it's outdated.
Shaun
Wow.
KC Barron
Yeah.
Shaun
And so paint a landscape for us, paint a picture of HIV and AIDS now in 2024, as you know it to be.
KC Barron
I'd say it's definitely progressed from the 80s. There is less stigma and discrimination, but there's still, it's still here. And I'd say it's also, though it has gone down, I feel like it's going back up.
Shaun
How so?
With condom usage being on a decrease for youth, specifically age 15, it went down this year. And also just talking about it, especially at my school, because I would talk about like sexual violence, sexual assaults and just sexual education. People would just laugh at it or they'd be like, that's disgusting.I think I talked about also condom usage and they were like, I would never use that.
Shaun
Really? What do you do with the information you've gleaned from a conference like this? You've come here because you weren't getting the information elsewhere.You've joined the organization and now you're active within it. You're here at this conference and then you do what with what you know.
KC Barron
So to begin with, I started at Let's Stop AIDS as an internship student. So I did it with P2P, which is peer-to-peer workshops. So we had to teach, so I had to learn from them.
And through that, I know so much because of that. With all the education that I've taken from Let's Stop AIDS, I've been going to my school, bringing Let's Stop AIDS, for example. I have a pride club at my school and I'm bringing them this Wednesday so that they can teach too.I'm also just bringing what I know to especially the sexual violence sector in my school. So then we can bridge some gaps with like transgender and non-binary students, for example.
Shaun
What's the reaction from other students when you're talking about the things you talk about?
KC Barron
Well, my first reaction that I came across was they laughed at it. What did they laugh at specifically? Well, we were talking about condoms and about like how people should use them, but they laughed at it.
Shaun
What else?
KC Barron
A lot of people found it disgusting or just uncomfortable to talk about, which makes sense.
Shaun
Why?
KC Barron
It can be an uncomfortable topic because it's very vulnerable. But it needs to be discussed anyways. I've also learned if we were to use like intimate language and like, what is it, erotic language, people are more intrigued to actually learn.
Shaun
So give me an example.
KC Barron
I was hoping you wouldn't ask.
Shaun
Of course I'm going to ask that.
KC Barron
The point is a lot of the educational stuff that we do, not us, but other people do is just consent. Not much. So if we were to talk about like dildos, or we just talked about like lube, that kind of stuff, that stuff we don't talk about in sex education at all.
So if we talk about that stuff that people don't usually go towards, but people silently go towards, I think that's important to bring up. I think that answers your question.
Shaun
You answered my question. Um, what's the general feeling that you have about your peers and their concern about acquiring HIV? Do they think that's something that is a danger for them?Or do they think they're easy breezy cover girl about it? They're not going to catch it.
KC Barron
Probably cover girl vibe. Yeah. I get a lot of students who think, oh, that's not going to happen to me.
But then next, you know, they get it and they're like, oh, I thought I wasn't going to get it.
Shaun
Do you know a lot of people who are HIV positive?
KC Barron
I think I know a couple people, but I have not had like an explicit conversation with them about it.
Shaun
What do you want people to know about the work you do and HIV and AIDS?
KC Barron
I want people to know that it's important to talk about. And I want them to know that no matter what, it's a safe space to talk about it. And it's okay to talk about topics like this, even if it's like topics that can be harsh, like sexual violence or even deeper, like suicide.
Those are topics that are very important to talk about no matter what.
Shaun
You've talked about sexual violence. You brought that up a couple of times. Tell us more about that, the work you do in and around that, and even define it for people who are listening and watching this who don't know what that is.
KC Barron
Okay, so.
Shaun
How you mean it.
KC Barron
Okay, I'll start with the definition.
So sexual violence would be like anything that is unwanted physical contact, anything that's harassment, stalking, sexual exploit. There's also like online behavior where like sending photos, and then that person takes that photos and sends it to the entire school. That would be sexual violence to me.
I speak a lot about it because at my school, I'm doing a capstone research project on the sexual violence sector in post-secondary and making it more accessible for transgender and non-binary students because there's barriers of them getting to that service.
Shaun
Why is all this so important to you?
KC Barron
I think it's important for me because first of all, I'm trans.So I saw that there's a gap that needs to be filled. It's also important because with that sector, it's once again outdated. It's also focusing mostly on majority of population, but not minority populations.So a lot of it, a lot of the research within it is for white women. But then there's also so many different people that are not white women. So how can we incorporate that?How we can remove that barrier of them accessing these services?
Shaun
And what's it going to take for schools to keep up, to catch up and keep up to think? A miracle?
KC Barron
Well, I think a student voice is a good start. And I think I'm trying to do that right now. I know that some schools are pretty good, but there is a lot of difference between each school.So there's some schools who are higher up in Ontario who have different services, more tailored towards indigenous people, for example. But then down here, not so much.Yeah.
Shaun
People like you are going to change the world. Casey, thank you so much.Appreciate you coming on today.
You did it. That's great.
Shaun
KC is making a real difference by challenging outdated sex education and advocating for more inclusive and informed conversation about HIV, STIs and sexual violence. His work through Let's Stop AIDS and in his school community is an important reminder that education is power. You can learn more about Let's Stop AIDS and how to support their work at letstopaids.org.
We're wrapping up our series of conversations from the No Time to Wait conference with Emma, a young advocate who spent the weekend leading public speaking workshops and engaging with peers on the realities of HIV and stigma. Emma shares her thoughts on why this issue still matters and how stigma persists in surprising ways.
Shaun
This is day two.The conference is just winding up.How are you feeling right now?
Emma
I'm feeling pretty good. I had a lot of fun both days, but today was like especially fun because I got to lead two workshops about public speaking and I feel like I met a lot of new people.
Shaun
Tell me why you're involved in this cause to begin with. I was saying to someone else earlier when I was interviewing them that back in the day when I was involved way more in the cause, people were dying and friends were acquiring HIV at rapid rates and there was no cure. Why is this an important issue for you now in times when we have one-a-day pills, PrEP, PEP, and the like?
Emma
Well, we've gone a long way since the 80s for sure, but I feel like it's not a topic that people talk a lot about. Yesterday, I had an interview with the Toronto Star and they asked me, do you think that youth know a lot about HIV? Do you think youth know a lot about STIs?And I said, I feel like we hear a lot about it, but we don't think of it as something that could actually happen to us. So it's just not really something we talk about that much anymore. And that's why I was really interested in it.Yeah.
Shaun
Why is it with the education system that we have that youth don't hear a lot about STIs and HIV and AIDS? Why is that sort of left in the wind?
Emma
It's not that we don't talk about it. It's just that I think the way we talk about it is a little weird. There's a lot of fear mongering that happens in schools.
It's like we kind of get, you know, we talked about this rhetoric at the conference today about how a lot of people think that HIV is a death sentence. And that's kind of the way that it's been taught to us. It's like, do everything in your power to not get an STI or to not contract HIV, because if you do, it's like over for you.And we learn a lot about preventative measures, but we don't learn a lot about like healthcare after you get diagnosed.
Shaun
Talk to me about stigma.
Emma
We learn a lot about cultural stigma. That's like a pretty relevant theme throughout the conference. There's a lot of people from a lot of different cultures at this conference.
I was thinking of my personal experiences. I mean, I'm Eastern European, and obviously a lot of time HIV is associated with the LGBTQ plus community. Because there's a lot of shame towards being gay in Eastern Europe, there's a lot of shame if you have HIV.And it's not even just about HIV. It's like the association it has to being a gay disease.
Shaun
What do you think the biggest hurdle for youth is around HIV and AIDS now?
Emma
We've been taught that it's like the end of the world, and that if you contract HIV, it's over for you. And I think that's why a lot of young people are like really afraid of it, because obviously we're really young. We don't want to die.And we're not really taught about like, hey, you can have a future if you contract HIV. And it's just kind of seen as a shameful thing, of course, where you're a little othered from society if you have an STI, because it's like, oh, you're not cautious. You didn't pay attention.
So that's, I think, the hurdle for youth is just the shame associated with it, but also because people think that you're going to die.
Shaun
Do you know anyone who's HIV positive?
Emma
I don't know anybody who's HIV positive. There's a couple people in my extended family who are HIV positive. My father's godfather was HIV positive, and he actually owned a hotel in Cape Cod, which was at the time like a very progressive area when it came to the HIV crisis.And unfortunately, he did pass away in his 50s. But yeah, he had a profound effect on my father. And also my father had a neighbor who was HIV positive.
He told me about this because I asked him a couple days ago. But other than that, I don't know anybody who's HIV positive.
Shaun
What have you taken away from the conference this weekend?
Emma
Well, I've definitely learned a lot about different cultures. And, you know, I've talked to many people. I've talked to some international students, some students from like across Canada.
It was even interesting to learn about since I grew up in Toronto, in a very, very metropolitan city, I kind of thought of Canada as like the super like progressive place. But it's been interesting to learn about like people from Northern Ontario people. There's a lot of people from Saskatchewan who came.A lot of people from Manitoba. It's been interesting to learn about like the disparities in Canada itself. It's been really exciting to meet a bunch of different people who came to this conference.And it's been very fun to hear all the speakers. And also one thing that I learned, well, I knew about this before, but there's a bunch of different stories that people with living with HIV have, right? It's not just contracted with sex.
We had somebody who got HIV from a blood transfusion and somebody who was born with HIV. And that's something that I knew from my training course prior to joining the No Time to Wait planning team. But it was still interesting to hear about their stories and how their families reacted.
Shaun
We're at the end of the conference. What does a conference like this make you want to get up and do next?
Emma
This conference makes me want to, so I'm a public speaker for background context. And you get to, at a lot of conferences, you get to like pick what speech you do. So I feel like I definitely want to do more public speaking with relation to this issue.
And I think I just really want to talk to people about it. I'll bring it up in conversations a lot more. My message would be something very impactful that I heard today from one of the guest speakers, which was don't treat me like somebody that you should have sympathy for, right?
So even if we're learning a lot more about HIV, even with other, you know, socially, culturally stigmatized issues, like somebody who's gay, for example, or like somebody whose mom died or somebody who has cancer, our first reaction is like, we should only look at this person with sympathy. So I think my message would be like, we are all human beings. And just because one of us has HIV doesn't make us like, it doesn't make us less of a person, doesn't make us more of a person.
We're just all people living here. Another thing that I was thinking about, something that kind of profoundly affected me, one of the guest speakers today started with the line of shake the hand of the person next to you or give them a hug. And then we all did that.
I shook the hand of the girl next to me. Some people at my table were hugging. And then she was like, now you know that you can shake hands with people who have HIV, or now you know that you can hug people who have HIV and that you can't contract it through physical touch.
And that really affected me just because also, like I mentioned before, the conversation of othering. So if I was to close this with a message, I would just say it's very easy and it's very natural for us to go into a state of othering other people. You know, we tell each other all the time, don't be so judgmental, but it's human nature.
And as one of my friends told me, it's not the first thought that counts, it's the second thought. So just, it's natural if you first look at somebody and you think, oh, they're different than me. So we're like different people, we're in different categories, but try to just remember that we're all literally just people.
Shaun
Thank you. Thank you so much for coming on.
Emma
Thank you so much.
Shaun
Appreciate you.
And that wraps up our conversation with Emma and with this special episode of the Realize podcast. Emma's insight into youth perspectives, education, stigma, and the power of simply having open, honest conversations about HIV and AIDS is a reminder of how much work there is still to do.
We've heard from incredible young leaders this episode, each of them proving that advocacy, awareness and action are not relics of the past, but urgent necessities of the present. They remind us that the fight against stigma, misinformation and complacency is ongoing. It's in the way we educate, the way we speak, the way we show up for each other and the way we choose to push back against outdated narratives.
If there's one thing to take away from these conversations, it is this, HIV is not a death sentence. It is not a moral failing. It is not an identity.
It is a health condition and people living with HIV are just that, people, people who deserve dignity, respect and the same right to full vibrant lives as anyone else. So let's do better. Let's have conversations that matter.
Let's challenge the silence, the stigma and the shame because change doesn't happen in whispers. It happens when we choose to speak up, when we listen and when we refuse to look away.
Thank you for joining us this episode.Keep the conversation going. And as always, take care of yourselves and each other.
Thank you for joining us on the Realize podcast, nurturing potential inclusion and belonging, a production of Realize Canada.
Please help us by taking our fast three question survey found in the episode notes. Thank you to our guests this episode for their expertise and generous sharing of their stories. Realize Canada fosters positive change for people living with episodic disabilities.
Writer, producer and host, Shaun Proux. Audio and video editor, John Mackie. Graphic design, Alexandria Ditner.
Special thanks to Tad Chmiel and Alex McLeod for their terrific assistance in making this episode happen. Executive producers, Roger Musselman and Janet London for Realize Canada. The Realize podcast is sponsored by the Government of Canada.
For more information on Realize Canada, visit realizecanada.org and follow Realize on X, formerly Twitter, Instagram, Facebook and YouTube at HIV and Rehab. Be sure to subscribe and to share this podcast with your friends, especially those with episodic disabilities. On your socials, and please take a few seconds to give us a five star review on Apple and Spotify.
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Thanks again for joining us. Until next time, what do you realize?
Hi, I'm Rakesh.
Hi, I'm Mandy.
Hi, my name is Jean.
And I realize.
And I realize.
I realize.
Today is awesome.
That when you open yourself up to others and share how you're feeling, life becomes even more beautiful.
Everything is better when you work with a team and surround yourself with wonderful people.