8:51PM Dec 21, 2020
Welcome to pozcast, the show that puts the positive in podcasting. Our program is created by and for people living with HIV. And we're here to explore HIV research in ways that matter. We're accurate, but not clinical. We want to hear and tell stories about what new research means for us, for our health, our love lives, and our relationships. We're based in Toronto, but global in outlook and we're produced at the MAP Center for Urban Health Solutions of St. Michael's Hospital, like Universities Without Walls. We're pozcast, and we're bringing HIV research to life. Today, you'll hear the views and ideas of our podcast guests. And while we respect their expertise, they do not reflect the views of St. Michael's Hospital, or University Without Walls. I'm your host, James Watson, a person living with HIV and a community based research coordinator. I'll be your guide for today's journey into HIV research. Today, I want to talk about HIV stigma, a social force so destructive, it can be more dangerous than the disease itself. The fight is not over my friends. I don't know if one person living with HIV who has not been affected by HIV stigma. It's everywhere. And it manifests both internally and externally and directly impacts our health. It's in the health care system, the legal system, the workplace and permeates our personal lives. It's time for change, and it can't come soon enough. Stigma is like a multi-headed Hydra. I'm not even sure if it's possible to kill this thing. Maybe stigma is innate to humans, a destructive emotion like jealousy or envy—impossible to eradicate. I hope not. I really want to believe that even the worst in US can change. You know, I know it's simplistic, but I truly believe that if everyone could just get to know one person living with HIV, things would be a lot different. If we could personalize the experience of living with HIV, we could have an impact. Perhaps it's just a matter of who you know, and how you know them, thankfully, Canada has some passionate researchers and community leaders working to make a difference in the fight against HIV stigma. There is a global survey and community building tool being rolled out across this country that's been developed by and for people living with HIV, and used in more than 90 countries worldwide. There is change in the air folks, and it's called the Canadian HIV Stigma Index. I'm encouraged. This time we might actually see change. Funding from the Public Health Agency of Canada, and the Canadian Institutes for Health Research has been awarded to Dr. Sean Rourke and Dr. Francisco Ibanez-Carrasco at the MAP Center for Urban Health Solutions of St. Michael's Hospital. Together, they're creating opportunities for people living with HIV to meaningfully engage in the project and build their skills and work in solidarity with the research team to combat stigma. At the same time, they're collecting data and documenting people's experiences of discrimination and HIV stigma in Canada. I had the privilege of speaking with two people on the frontlines of the fight against stigma. Dr. Sean Rourke, one of the principal investigators for the Canadian HIV Stigma Index project, and Brittany Cameron, a mother, a wife, and community leader living with HIV. Let's first hear from Dr. Sean Rourke, a clinical neuropsychologist and scientist at the MAP Center for Urban Health Solutions at St. Michael's Hospital, and Professor of Psychiatry at the University of Toronto. He is also the director of two national centers funded by the Canadian Institutes of Health Research, the CIHR Center for Research in HIV and AIDS, and the CIHR Community-based Research Collaborative Center for HIV.
So Sean, welcome to pozcast. I'm excited to have you on the show, Sean. We've worked a fair amount together on a number of community-based research projects and I've always admired your sense of purpose and your drive to make change in the lives of people living with HIV. How is your work do you think been influenced by people living with HIV?
So it's really shaped it in a very profound way. In fact, it's really been integral in sort of thinking about the problems that exist out there and how to understand them from the lived experience perspective. As a researcher, I want to do work that really has a real life impact. I can develop a question or look at the literature and think about what's a study that needs to be done? But I was always intrigued by, sitting around the table with people with lived experience people living with HIV to understand, you know, is that the right question to be asking? Or how could it be better contextualized to really help them, you know, in their lives? And and I think a big part of that was just as well talking with an individual, but then recognizing how we're supporting- there's so many different populations of people living with HIV. And so that really gives us such more depth into understanding that context. And what I could do to think about, you know, building better questions that had more impact on an individual level, and also at the the healthcare system level.
How do you see stigma impacting the life of people living with HIV as a researcher?
So the experiences of discrimination and stigma, you know, significantly affect people's health, and their access to healthcare. And so we've known this for a long time. In fact, what's interesting is, as we, you know, as we do work in the field, and really try to figure out how to make sure people get engaged and help them support them in care, and now the treatments work, you know, how do you engage and support people to be engaged in their care? It's now looking at, you know, what are some of those barriers that are structural barriers or societal things of racism and sexism, and, and other, you know, other "isms" that affect, and set the context for why people can engage or not. But then understand individual level- what are the experiences of people in the healthcare environment or in the larger community? And discrimination and the experiences of stigma can have profound effects on people's health and their well being. And so part of our work is really to not necessarily—it is I think, to, to really give that more depth and experience so we can figure out how to solve it.
I mean, to me, this isn't just a study, I mean, this is like a movement in a way, wouldn't you say?
I would say so. And because we, like with housing, we knew when we talk to people with lived experience, and people at the front lines, the executive directors and housing—they already know is a problem. And they knew how much it was a problem, it was really getting the data that we needed, with the stories and that experience, and saying, you know what,let's bring this, let's give this a personal voice and a face and a story, for people to understand that this is still going on and we need to change it. I think that's what we're gonna bring to this, it's having the right data and knowing the extent of the problem. But I think a lot of it is going to be about how we take those stories and really think about this in a broader way, on how to influence changes that are going to really have an impact on people's lives.
So I guess the plan is not just to collect data, but it's to push out messaging at the same time?
Right and bring to—bring to life, yes, the human dimension to all this, I think the data is going to confirm what we already know. I think it's going to show us how significant it is in a society where we have a system that, you know, Canada is a wonderful country, but these experiences are not ones that I think people should endure. And I think we can change that. And it really is putting a face to it in a way that helps a person on the other side understand, because a lot of times, what we're seeing is—we're talking about HIV, but experiences of discrimination stigma are often, there's this thing called intersectionality. There are different things that we bring to the table—the way we look, the way we act, what we do, you know, the religion, the culture we come from, and people make decisions about those things without always knowing really what it really means. And I think giving a human face to a person's experiences, and the dimensions of them will shed a light on making this better.
So you talk about stories and you talk about data, and I wonder, what is the impact of stories?
The story gives it depth, it gives it context, it gives that human experience, it gives...it a personality, it gives it a dimension of that individual. And I think when you bring the data together with those stories and the human experience, I think it's what we need to change stigma/discrimination for HIV. Because I think it's not just the data and saying how often it happens and it's not just a story of describing it, but it's really, that together for someone to hear about on the other side—how somebody describes their experience living with discrimination, the experiences of stigma, and how it's affected them, I think part of it, is that we want to influence not just those who are living with HIV, but others. And so we want—this as part of as we started the conversation on a social movement, we need to get people hearing these stories so that they can connect them to their own experiences and seeing what what we all do, perhaps not, we don't necessarily expect to do but we do without knowing it. And I think it's opening up our minds and our mindsets. And really how we might change our mindset in a broader way, so that we actually not only helped to alleviate and help that person who experiences that experience, but also enriches their lives and the person who's on the other side. So I think if we do that, we've been successful. And I think it's one person, perhaps one, you know, and people at a time that we actually helped influence. That a broader change in our society or in our communities that will make a real difference.
Well, you know, I have to say, it's very exciting. I mean, the stigma is like, sort of the mother of all ills, really, and I don't know one person living with HIV who has not been affected by HIV stigma, so I wish you all the best.
Thank you, James.
You're listening to pozcast, a joint production of St. Michael's Hospital, and Universities Without Walls. It seems clear that personal stories, the lived experience of people living with HIV combined with the data from the HIV Stigma Index, will have the greatest impact fighting HIV stigma. So let's shift gears a bit and hear one of those stories. Let's chat with Brittany Cameron, a champion in the fight against HIV stigma. She is an HIV-positive mother of three young children, a wife with a partner who is HIV-negative, an LGBTQ ally, and a human rights activist. Britney has graduated from the Positive Leadership Development Institute, is a member of the Turning To One Another network, a representative on the provincial Women and HIV Initiative, and a member of the Canadian U=U or undetectable equals untransmittable steering committee. Brittany Cameron, welcome to pozcast, you have a lot going on my friend, you are an out HIV positive woman working on the frontlines of the AIDS response with three young children in a sero-discordant relationship. And it seems to me, you're thriving under circumstances that would challenge many others. So can you share with us how HIV stigma has impacted your life and how you've responded to it?
Yeah, for sure. Thank you for having me. I've had challenges. I've had some pretty nasty things said to me, things around choosing to have children, the perceived risk of that, choosing to be in a relationship with someone who is HIV-negative. Everybody has an opinion and often their opinion is uninformed. So I've had some significant challenges over last decade.
And who are these? Who are these comments coming from?
Yeah, so interestingly, when we were speaking, kind of planning this pozcast, I was challenging myself to think where I've experienced stigma. And when something that occurred to me was like, within, you know, two weeks of my diagnosis, I was experiencing stigma in the sense that I had an interaction with Children's Aid—they had concerns around my substance use and such, and I wasn't actually using substances. And so they wanted to stay involved. And I had said, you know, what is your motivation for that? Why do you want to stay involved that? I'm prepared to take care of my child and do the right thing. And they had said, well, because you're HIV-positive. And, it actually took me almost twelve years to realize, Oh, that was actually my first interaction with stigma. And you know, the experiences of being an HIV-positive mother, and attending different parenting groups where you're unable to breastfeed, and people want to know why. So there's some stigma around that. I recently, not so recently, but a few years ago, someone in my community was criminalized. They were charged with HIV non-disclosure and the comments from community like talking about branding people with HIV, sending us to an island, isolating us, were really scary. It was a really scary time to be in my community and knowing I lived openly with HIV.
There's been some challenges.
Where do you find your solace? Like where do you find your strength to manage these situations?
I'm not 100% sure, you know, for me, I think it was, it was about taking my power. So the reason I live openly with HIV is because if I don't keep it a secret, then it's not someone else's secret to tell. And so having people know my status that also offers opportunity for conversation and education. So I think I take somewhat of a solace in that education piece of just educating people in our community. Thinking about stigma, I was just recently saying to a student of mine, you know, there's some people's minds that you're just not going to change and there has to be—come a point—where you say, okay, this person is actually just choosing to be ignorant, let me move on to the next person who's interested in the information you're willing to share. The piece of solace is take solace in knowing that my story and sharing information empowers and impacts others.
Right. So that's, I mean, that brings me to my next point. So I mean, do you think it's possible to change people's attitudes?
Um, absolutely. It depends, as I said, on the person, right?
A few years ago, several years ago, there, a group of people on a debate forum on Facebook had gotten a hold of my story, they kind of debated my existence, my choice to have kids, all of those things. And while the comments were really horrific, I was still hitting back with like science and information. I knew that there was people that were reading that, that weren't commenting that were actually becoming informed. And people did reach out to me. And so yes, absolutely, I think it's possible to change people's attitudes, but not everybody's.
I guess, part of that education was U=U, I suppose, right?
Yeah. So I think, you know, I often say in presentations around U=U, I've kind of been living U=U before we had a tagline for it, in the sense that I am in a serostatus relationship, my partner's HIV negative. And even though, for the last kind of decade, I've been told, oh, the risk is around, we think around less than 1% transmission. People are like, well, less than 1% still mean some risk. And it's like, now we have the science to say to people, actually, there's no risk. And also this piece of like, I'm not forcing my partner to be in a relationship. He's educated, he understands HIV, HIV transmission risk, all those things. But this was, for me a really empowering moment to shoot back to those people who didn't want to change their attitudes. I've had this experience, a young woman had sent me a message recently, while the U=U campaign was happening, she really didn't understand what it meant. And she was like, you should be charged, you should go to jail, you know, and really positioning my husband as a victim. And ultimately, you know, this is a grown man making a consensual choice, whereby there's no risk, but I think it's great, you know, being able to tell people, U=U actually, I'm of no risk to you, or or anybody else, for that matter.
And it's great that you're on the steering committee, you know, carrying that message forward. That's fantastic.
Where do you see yourself in ten years, let's say, as your children reached teenage years, and all those questions, and they have to manage it as a young now, but how are you preparing for that?
Yeah, this is a great question. And not something that I've actually thought about deeply enough. But I feel I'll still be somewhere in this movement advocating for people living with HIV. And with regards to my girls, my girls are smart, they're smart kids. I don't hide my HIV from them. They're often involved in our community and in community events, and actually love many people living with HIV in our community. Sadly, one cannot really predict the future. And so I hope I would have prepared them as best as I could respond, to respond to the stigma the same way I would, and I suppose I'm about to find out as my oldest enters junior high this year.
Yes, I guess you are, you sound well prepared to me. So what is the one piece of advice you would give to our HIV positive listeners affected by stigma?
I think it's love yourself. Because once you love yourself, you know, sometimes you're able to allow that stigma just kind of roll off your back. When you look at those around us who inspire us and stuff. Like it's really that thing of like, not letting those negative thought process impact you. And I think it's also important for people to know—sorry, this is not one piece of advice, but two, but I think it's also important for people to know that there's no shame in being HIV positive. Like, there's so many of us worldwide living with HIV—over thirty-four million of us—like, there's no shame in being HIV positive. Love yourself.
Beautiful messages. Thank you.
Thank you so much for having me.
Big pozcast thank you to my guests Dr. Sean Rourke for chatting with us about the Canadian HIV Stigma Index. I'm excited by the holistic community approach of this study and encourage the people living with HIV are taking center stage and leading the way. Sean's passion and knowledge on this issue is clear, and very welcome. I also want to thank Brittany Cameron, for sharing some of her story with us, for giving us a glimpse into how she has thrived in the face of ignorance, educated others with our unflinching focus on facts, and inspired countless with the power of the message: love yourself. There is no shame in being HIV positive.