Today, you will hear the views and ideas of our pozcast guests. We are eager to showcase their expertise and provide a platform for their views, but they may not always reflect or align with the views of the Positive Effect, or the MAP Center for Urban Health Solutions. Welcome to the pozcast we are created by and for people living with HIV. On each episode, we explore what it means to be poz. We challenge the status quo and we share stories that matter to us. I'm James Watson and I'm HIV-positive. If you're living with HIV, listen up.
Before we get going, you know, I just have to tell you on this episode, I was just having one of those days, I was talking to Tara Jewal and Marc Seguin, two of the Positive Leadership Development Institute managers, and we were having a great conversation about leadership and I kept calling their program the Peer Leadership Development Institute, instead of the Positive Leadership Development Institute. Well, we were gonna edit it out, but you'll hear at about the 20 minute mark, Marc Seguin correct me in the kindest, most artful and articulate way. I just had to keep it in. He modeled the way. I mean, these are the skills of a true leader. I hope you enjoy the show.
Our respons to the HIV epidemic would not be nearly as successful without the effective leadership of people living with HIV. And that's just a fact. And I'm going to propose that there may be nothing more important for our community right now than building the next generation of leaders. Lots of dynamic and smart people with rich stories have stepped up and stepped into roles of leadership over the years. But is it enough? Are we fostering enough HIV positive leaders to sustain and champion the response to the years to come? Greg Szekeres has wrote in his paper "Leadership development and HIV/AIDS," and I'm going to paraphrase here, that although strong leadership of people living with HIV may not always guarantee success of HIV and AIDS programming, it has become clear that without effective leadership, progress and success is almost impossible. He goes on to say that a leadership vacuum is approaching. And this paper was written in 2008. So I wonder, is a leadership vacuum upon us? Is it already happening? On our program today, we're going to explore what leadership for people living with HIV looks like and hear about some of the really great work being done to develop the next generation of leaders in Canada. There are many forms and constructs of leadership building, but on today's program, we're focusing on the Peer Leadership Development Institute, or PLDI. It's a really exciting grassroots program founded by the Ontario AIDS Ntwork in 2006. And it has now expanded to British Columbia, with the support of the Pacific AIDS Network, and into Quebec, in partnership with COCQ-SIDA, the Coalition of Quebec community organizations fighting against HIV/AIDS. My very special guests today are Tara Jewal, the Provincial Manager of PLDI in Ontario, and Marc Seguin, the Provincial Manager of PLDI in British Columbia. Welcome, both of you, to pozcast.
Hi, there.
Hi. Thank you for having us.
It's wonderful to be here.
You're very welcome. So let's dive right in. So for our audience, can you explain the main goals of PLDI? Like, what do you want people to get out of the program?
Well, I'm glad you started off with what Greg had said about leadership development, because for PLDI, leadership development is self-development. So it really is an opportunity for people living with HIV to come together, and to tap into these untapped resources they have regarding their lived experience of living with HIV, and using it for themselves at home, with their families, with their friends and in community. It's just being able to help, you know, provide more tools in the toolbox for people to just really, really be part of, you know, the principles of GIPA, which are nothing about us without us.
Right, right. And can you explain to us the like the foundation of this training, what do you draw from?
Yeah, our training, the tenets of our training is based on the leadership challenge, which is by Kouzes and Posner. And it's not in our entire training, but it's a component of it. And it, it really speaks to our five practices of leadership, which are modeling the way inspiring a shared vision, encouraging the heart, enabling others to act and challenging the process. And those are all things that people living with HIV do every single day, but they're also what people who are leaders in community do as well. Those are the principles of really effective leaders. So we just kind of, I'd like to say this, as trainers for our participants, Tara, myself, Daniel-Claude in Quebec, we set the table and the participants come in, they have their go at their menu through our different trainings we offer.
Right. So what does a day in the life of a participant of PLDI look like?
I'll take this one. So there's three main components to our workshop. The first one is the core training. And we take people away out of the city from a Thursday to a Sunday. And we really sit and we discuss, you know, what is leadership? How can we be leaders in our own lives? And we do believe that anyone can be a leader, given the right tools. The second component of our training is a governance workshop, where we learn about non-profit governance, and the ins and outs of being on a non-profit board. And the third component is communication and managing that message, whether it's managing a message that you have to give to your doctor about how to switch up medication, or if it's a message about, you know, telling your own story. And what does that look like when you are asked to tell your own story.
I really liked that idea about you aren't born a leader, right? That you—everyone can learn to lead. So and what does that look like for various people?
I think it really varies. I think I've seen a lot of people who just don't believe that could be a leader. That's not what they thought, I don't know, many people who are born to say, Hey, I'm born to be a leader, and I'm going to be a leader in life. I see people who really, really didn't think they could, and now they're leading organizations. So it's just like I said before, giving people the right tools and the opportunity to shine and be all they can be.
Right. So and this is like, you know, to be a leader, you can just—it might mean just finding your voice. Or it could mean you know, like you said, leading an organization in some way...
Right, leading doesn't always need to be in the front.
So what would be the most common reason that people attend PLDI?
I think the fact that we bring people together for a weekend that are all living with HIV from—throughout the province, is something that is just so valuable and so special. And to be able to sit in a room with you know, 18 other peers and people living with HIV, or you may have never have come across them before in your life, but because we have that unique bond and living with HIV, that's something that I really think people do come back for. Of course, the training is amazing, and all of the content that we give is fabulous, but I think there's really something special about coming together in a room filled with people living with HIV. So all the facilitators, trainers are also people living with HIV, which makes it a really, really unique workshop.
Yeah, that's very exciting. What like, Marc, what do you think—what kind of dynamic does that bring to the training?
I think, you know, I think it brings a certain level of excitement. There's a feeling of emotion, anxiety, there's a kinship, there's a place—a feeling of Oh, my God, this is where I've landed. I myself, you know, before I was a trainer, I went through the training itself in Ontario back, you know, way back in 2008-2009. And, you know, to sit in a room and, you know, be there with people who are your peers, and the trainers at the front of the room are HIV-positive individuals, so they're your role models. And it's reflected back at you, that is extremely powerful, right? To see, you know, you're wanting to see people with lived experience in those roles. Yeah, the feeling is incredible from the get-go. And we we take people on a journey right through the weekend. You know, this is an opportunity where people get to do a little bit of, you know, asking the answer to that question, Who am I as a leader, and that's what we do in the in that first training we do. It's a bit of like reflecting a little bit of navel gazing, we take people away. And the reason we go to a retreat setting for that first one, is because we want to have people kind of disconnect from, you know, their partner, their pets, their neighbor, you know, their dealer on the corner, you know, their parent, whatever. And it's their time to do some time to reflect and we kind of dig deep you know, people are asking, you know, questions, so Consider, you know, what are your core values? How do you feel about being a leader in community? Where do you fall on the HIV timeline regarding, you know, when you got diagnosed? When did you first hear about HIV? It's quite a rich experience.
So having everybody coming together who are living with HIV, and I'm assuming at various stages of coming to terms with that, what kind of supports do you have in place for for people as they go through this journey with you?
Mm hmm. Well, we say pretty well up front that because it's a training, it's a professional development opportunity, we're very up front, and we say, we're not a support group, but we're a supportive group. And so of course, we acknowledge, you know, sometimes feelings come up for people. And that's normal as individuals living with HIV where, you know, people are always perhaps getting activated at different times, when they can maybe connect with somebody else's experience and they might be sharing a little bit of a moment. But that's what's nice about having a team of trainers behind you. And we also, what we do is there's a key component of our weekend is using structured feedback. So we're constantly checking in with our participants, through them writing back to us, like how they're doing, you know, how was this session? And we're reading those like mini feedback forms on our breaks and our lunchtime and we adapt it. "Oh, my God, I'm too tired. That session was too long." Or, "oh, could you go over this part again?" And you know, we adopt it. And or if somebody's saying, "Oh, you know, I'm feeling a bit confused. That was a little bit. I felt quite nervous in that conversation," then we'll have an opportunity as instructors or trainers-in-training to go and check in with that person.
Right. I see. So Tara, the commitments are model the way, inspire a shared vision...right? That's the commitment. Is that correct?
It's the leadership practices.
That's the practices. So out of the practices—which is model the way, inspire a shared vision, challenge the process, enable others to act, encourage the heart—are there ones that are more accessible for people than others? That are harder to grasp than others?
Um, yeah, for sure. I think sometimes people who model the way may not realize that they're modeling the way, you know? Walking the talk. Challenging the process is something I mean, I'd love to meet someone who's not challenged a process before. And sometimes it's important to know how to challenge the process. So you know, do you know the process that you're challenging? Enable others to act is something I see very, very often, because it's people helping each other out. So even as new participants to the workshop, it's usually because of other participants that have recommended them. Yeah. What about you, Marc?
Yeah, I'm just thinking that something that we all have in common, I think, from the get-go regarding people who get connected to PLDI is, is that not-for-profit organizations are in the business of one of my favorite practices, which is encouraging the heart, right? It's not for profit work, right? We're not in it because we're trying to drive the stock market up. Quite often people barely have money, you know, at the end of the month and fiscal year to be able to do the work they're doing. So there's really a lot of, you know, heartfelt people, both our allies and community and people living with HIV who are doing the really good work, and these not-for-profits. So that's a great example of encouraging the heart—is coming together and community doing community work. And also taking the time to acknowledge that, you know, like celebrating small wins, we call it like, "Wow, way to go, that's great. Oh, my gosh, you got a new volunteer role! Wow, you know, send up a flare." Or, you know, "Wow, you've got a paid position, and you haven't worked in five years. Oh, my God, that's like, awesome." And we need that, and so do our allies, right, our non-HIV positive people who are, you know, in roles being service providers, managers, EDs—they also need to be thanked and receive a pat on the back and "thank you for your good work," right? Because we're working in areas that, you know, it's HIV AIDS work, right? It ain't easy.
So I wanted to touch on disclosure. And, you know, I know it's a challenge for many of us and many people living with HIV. So talk to me about disclosure in the context of leadership? And can you have one without the other? Marc?
Yeah, for us here in BC, because disclosure is such a broad topic, right? It covers—it can cover a lot of different areas regarding disclosure around, you know, your sexuality, you know, when you're going to be intimate with an individual. And here in BC, because it's a leadership training, we focus on disclosure as it relates to leadership. How can a person go about disclosing when they're being called to be involved in community? So it can be like on a board of directors, and quite often to be on a board of directors, you have to be out regarding your status, right? Or if you're being going to be asked to, "Hey, it's World AIDS Day, we want to get a quote from you, or can we have your picture taken of you?" Or, "Oh, we're doing a video clip for the organization? Would you like to be involved with us?" Those are all forms of disclosure where, you know, quite often now, you know, by doing that, it's out there, right? So we have a conversation and here in BC, we show a few examples, through videos of how people have been disclosing...and through different like PSAs, things like that. And then we put them into groups, and then people have conversations around disclosure and what that looks like. And for some people, it's a journey for them, right? They could for various reasons, for safety reasons, or because they're not out to their family, or friends or work, etc...they kind of choose how, who, what, why, when and where they choose to disclose in that regard.
Well, it's an interesting tension, really, I mean, you know, as a peer leader, how you're recognized for that, if you aren't disclosed, but at the same time, it's a completely personal response. It's definitely a challenge. So what about you, Tara? What are your thoughts around disclosure and leadership?
I remember the last question when I applied for this job was, you know, how can you be a coordinator of this program and not be fully out about your HIV status? And I said, well, it's really easy, it's about the program, it's not about me. And I can get up and talk about this program quite freely. And then I've met people that if it wasn't for people who stood up, and you know, stood in front of whomever and fought for medication, and were loud and proud about their HIV status, I'm pretty sure I wouldn't be here today in this capacity. I think the people who are the quiet ones can make just as big of an impact. And there's a lot of them. I agree, disclosure is a complete journey. You know, there are a lot to it, once your status is out there, it's really hard to take it back. And you know, we always can get into the whole discussion of tokenism. So we always talk about, you know, "Why are you disclosing?" What is, you know, "What is the point of disclosing? How does that look? How can it affect your life?" But overall, no, I do not feel that you have to disclose your status in order to be an effective leader.
Do you think there's too much pressure on people living with HIV to become outward facing leaders?
Um, no. I will say for me personally, and my own personal journey, I was never pressured to the point where I felt like I had to. There are times where I, you know, wish I was more brave enough to, but that was me and my personal feelings. Overall, I felt like I was able to go through this disclosure journey, and making my own decisions and not feeling pressured to be out and open about my status.
Right. What do you feel about that? Marc?
Yeah, I feel like it's a journey. Like, I feel like it's a journey, because it's such an important topic, right? It's connected to everything that an individual is. There's still a lot of stigma connected to HIV, and it's about choosing who and when, you know, making those disclosures to, right? Like, "Who is your company? Are you in good company? Is it for good reason?" And I always find it, you know, incredibly remarkable individuals, as Tara said, who came out years before, you know, we're like the face of HIV and fighting stigma out in community, you know, fighting for access to medications. I think of like, you know, the first person who was a member who had, you know, led a member-led agency, you know, back in 1986...What that must have been like for them to be the chair of the organization during a time, you know, that was not at all tolerant around HIV. That's incredible. To be that strong.
Absolutely. And, you know, the Peer Leadership Development Institute opens the door for that.
Right. And James, I love how you're referring to it as the Peer Leadership Development Institute. It's the Positive Leadership Development Institute. But as I'm hearing you say, peer, you're absolutely correct in that regard, because it is peers, we are all peers on this journey. And when we get together, and we do trainings, either our core training or like, Tara was referring to our communications or governance, we're using the wisdom in the room when we're working on what we're working on, right? Because that's it. Like sometimes I've just been up there and I'm gobsmacked because oh, my gosh, I haven't heard that before. And I love this expression: leaders are learners.
Right. Oh, yeah, absolutely.
And
when
I
heard
that,
I
was
like,
Oh,
my
god,
there's
a
pressure
off
me.
It's
not
about
being
perfect,
right?
It's
not
about
holding
a
person
who's
the
leader
to
a
higher
ideal.
No.
Leaders
are
learners—
we're
human,
we
make
mistakes,
you
know,
you
learn
from
them.
But
oh
my
gosh,
to
be
on
a
leadership
journey
and
to
help
others
along
on
theirs
is
an
incredible
privilege.
Absolutely. Did I say Peer Leadership Development Institute, right from the very beginning?
You did and that's okay. You know why? Because you're a leader and leaders are learners.
Right? Still learning, still learning, folks. So, I guess I have a question about people who come to—going away for a few days...Do people ever arrive and then halfway through, say, "Oh, this just isn't for me." They're not they're not ready? And if so, how do you manage that?
Okay. I'd like to take this jar. And it's just and I think it's kind of being up front, James, that we kind of let them know that. It's not like a retreat, like we're there from a Thursday evening until a Sunday, like almost four days. And we're working, we're in a classroom, we're not off like canoeing and, you know, reading on the dock kind of thing, right? Like they wish, right, but we're not we're not doing any of that—we're introducing concepts, you know, people are taking notes, people are participating in activities, you know, people are—have opportunities to come to the front of the class and help out themselves. It's one of those things that I think here in BC, and I'm sure it's very similar in Ontario, that, you know, there's quite a selection process that's involved, of bringing together individuals that are in a place of what I call readiness to engage in leadership, right? Being in a place of readiness. And we have those conversations in our review committees when we're looking at applications and things and information, we're going, "Oh, my gosh, you know, very little informations written down", you know, maybe not the right time for them, maybe it would be better for them if they went on a retreat first and got connected to what it's like to even get away for the first time versus get away and have to, you know, be working in a classroom setting.
Right. So this this is made clear.
Yes. Yeah, exactly. And you know, and sometimes it has happened, where we've had to exit a person from the program, because it's about participating, it's a certificate program. People receive a certificate when they complete it, right. And so people need to participate. And people participate in a lot of different ways. But we're there to really want to help people succeed, really. We'll go through, you know, great extents to want to help that happen.
So people take the course, then what? After people graduate, is there an ongoing mentorship or some sort of connection to outside agencies? Is there post-PLDI support?
So we are developing new workshops. So last year, we piloted a facilitator workshop, so we're always trying to keep the content new. Since COVID. Marc, actually, it was BC that started doing graduate check-ins online. And the uptake here in Ontario has been phenomenal. And we have people who are, you know, part of the very, very beginning 2010 groups of graduates to people who graduated as early as 2019. So you get a great group. Ontario has been able to offer to alumni to bring people together. And something that especially if you're a graduate, you're aware that we are very, very keen on sending out evaluations asking how you're doing, seeing how it's been the last six months to 12 months, 18 months, so we try our best to keep in contact with graduates. I think one of the best initiatives we've taken has been since COVID with BC starting online check-ins and we actually had a national, a BC and Ontario jamboree, which was able to bring people together from across the country, which was amazing.
Oh, wow. Okay. So, what do you think—what does PLDI do really well?
I've met all of the facilitators from all three provinces. And all facilitators, slash trainers, are graduates of the program. What do we do really well? I feel that we're there 100%. Like, you are getting 100% of Marc for that weekend. He is there, we listen very well. I feel that we definitely see the best in people and help people bring out the best in them.
What do you think, Marc?
I think, yeah, I love that question, because I think we inspire a shared vision—is what we do. Like people are coming away feeling like, Oh, I'm connected to something more than myself right now. Like, sometimes people run into each other and, you know, that could be at something where somebody presented and then go, have you taken PLDI, because you sound like you've taken PLDI, just how they're talking what language to use, etc. And that's great. You know, like, there's people who've never perhaps even received a certificate for something in their life, right, and they come to a training, and it's incredibly empowering and heartfelt and warming. When you see people who come from other countries, where, you know, they're African countries, where women's voices have been hushed and silent and feared and abused out of them. And they start the weekend, you know, barely being able to feel comfortable and voice and wondering what's happening. And then by the end, and they're standing there, with their certificate and saying how proud they are to, like, meet and work with other people living with HIV, it's incredible. Like, and, you know, those same individuals have gone on to start their own organization, you know, African Canadian Positive Network here in BC is a great example. You know, that's everything.
That is everything. That's fantastic. In the same vein, a question...So where's the room for improvement in the program, do you think?
I think funding is always a big thing. Right? Yeah, funding is always the, you know, the ongoing concern. And, you know, we've over the years, we've had, like, a lot of, you know, different funding sources, you know, through the Provincial Health Agency of Canada. We've also had, like MAC AIDS, Gilead, different things, and, you know, a lot of work has to go into a lot of, you know, our funding proposals, etc. You know, sometimes just to get a couple of $1,000, right? And so, you know, funding is paramount, because it takes funding to put on, you know, the work we do to bring people together, to transport people, to feed people, all those things, right. And so funding is important, but we're incredibly hopeful—right now, we've just submitted a funding proposal to PHAC to hopefully be funded between 2022 and 2027. But we also acknowledge, you know, PHAC has, you know, limited amounts of money. And, you know, the competition is very competitive. And, you know, we wish all the organizations incredible luck on getting funding, because, you know, the grassroots organizations are as deserving of being given a kick at the can, you know, like we were.
Well, absolutely, absolutely. I wish all the best with that. A couple more questions. So, you know, I guess how can people get involved in PLDI?
Well, they could contact us directly.
We'll be sure to put your information.
And if they're connected with one of our member organizations, whether it's from BC or Quebec or Ontario, I feel quite confident that organizations are well versed in what PLDI is and isn't, and who it's for. And, yeah, those are the two main ways to get involved.
Okay. So let's get personal. So, you know, as leaders of a leadership program, do you feel like your behaviors and opinions are under a microscope?
Yeah, no, I don't think so, James. In the sense of—like, I kind of go back to that statement, where it's like leaders are learners, right? Like I'm in this position because of you know, I took a chance one day more than 14 years ago, to start, you know, volunteering, cooking in a kitchen cooking brunch, which led to, you know, being involved in committees, which led to being involved in a board of directors, which led to, you know, returning to work, which led to, like, you know, now going on, like what, 14 years, 15 years paid work in the HIV community. But in all, it's going on 25 years work. And I consider that 10 years of being a volunteer, you know, so important, it's equally important as paid work, because without our volunteers, we wouldn't have not-for-profit organizations, really.
For sure. And, Tara, how do you feel about that? Do you feel you're a little under the microscope?
Um, I do. I've been with the Ontario AIDS Network now for almost 10 years. And as I agree with Marc that letter learners are leaders, I do find that because of my position, maybe people expect me to be a certain way or to, you know, put me on a pedestal and I'm not. I'm just like everyone else, no different. I make my mistakes. And yeah, I didn't definitely was not a little girl, like when I grew up, I want to be a leader in the HIV sector—wasn't thinking that at all. And sometimes it's hard. We all have our bad days, sometimes. I'm very privileged to have a strong team of managers that you know, we connect to every week. It is all work, but sometimes we just have to say, you know, it's been a shitty week, and it's—sorry, it's been a tough week. And so between my managers and my facilitators, and my manager at work—my boss—I'm very lucky to have those people I can talk to and go to and I'm having those days. But at times, yeah, I don't think this is a job. Like, this is a job where people are watching you. And sometimes people are watching you to fail, and others are watching you to, to not. So, you just have to, I don't know, I always say smile pretty and watch your back.
I'll take that. So I like I want to close the interview. I have like five rapid fire questions, and I'm just like a choice between two words. You each get to choose whatever, you know, whatever answer you want. So I'll start with you, Tara. Text or phone?
Text.
Freedom or hope?
Freedom.
Dogs or cats?
Both.
All right...It's going against the rules.
Okay. Cats, cats, cats.
Okay. Rain or snow?
Rain.
Piercings or tattoos?
Tattoos.
Okay, Marc, same questions. Texts or phone?
Phone.
Freedom or hope?
Hope.
Dogs or cats?
Dogs.
Rain or snow?
Rain.
Of course. BC. Piercings or tattoos?
Piercings.
Excellent. Well, thank you both very much. It's been wonderful talking with you. We'll see you again.
Thank you for this opporitunity.
Thanks, James, for inviting us. This is great.
This is great. Thank you so much, James.
You bet. That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at pozcasts4u@gmail.com. That's the number four and the letter U. Pozcast is produced by The Positive Effect at the MAP Center for Urban Health Solutions. The Positive Effect is a facts-based lived experience movement powered by people living with HIV and can be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme podcasting company in Toronto.
