Today you will hear the views and ideas of our Pozcast guests. We're 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 Pozcast we are created by and for people living with HIV. On each episode, we explore what it means to be pause. 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.
Every time I hear the term, the hair on my neck stanza, especially in a time, and an experience like the COVID pandemic, we needed people to be solid, you know, in solidarity with each other. We did not need them to be isolated. You know you can be socially connected and physically distanced. The term got out there. Public Health Agency of Canada corrected themselves but it's too late. They started saying physical distancing, but it was too late you know too many people are still saying social distancing, I just find that unfortunate. It's the product of not talking to people in the community before you put into place measures.
We have a great show for you. This is Pozcast.
You know, I'm a lucky guy. Every month I get the opportunity to sit down and talk with some of the most engaged and inspired leaders in our community and today is no exception. Today, my guest is Ken Monteith, the executive director of COCQ-SIDA, the Coalition of Quebec Community Organizations in the Fight Against AIDS, who's also on the organizing committee of AIDS 2022, the International AIDS Conference happening in Montreal as we speak, I believe by the time this airs. And with COCQ-SIDA as one of the main local organizational partners, he is a busy guy. So I'm thrilled that he has chosen to be with us today. Trained as a lawyer, he holds degrees in Industrial Relations, and Common and Civil Law from McGill University, and was a member of the Quebec bar from 1991 to 2001, when he resigned to devote himself more fully to his community work on HIV and AIDS. He is an active participant in HIV research, especially projects concerning the quality of life of people living with HIV and prevention for men who have sex with men. Ken, welcome to Pozcast.
I want to start with a little bit about COCQ-SIDA for those listeners who might not be familiar with the organization. So what is it they do? Like what's the mission of COCQ-SIDA?
Okay, well, COCQ-SIDA was founded in 1990, several organizations in Quebec already existed, but they were at a regional level. And they needed a voice, which in Quebec, we refer to as the national level, which means all of Quebec. So they needed a national voice to interact with public health on a provincial level, and beyond the borders of Quebec as well. And then we have developed various areas of action, including developing communications tools that the the members can use for their interventions, especially in prevention, but in other areas as well. We do community based research, we do training for the people who work in organizations so that everybody is on the same page when it comes to their interventions on HIV. And we have a whole sector on human rights. So two aspects, one, legal information service for individuals who have a problem in respect to their HIV status and the respect of their rights, and the other is more of an advocacy position to to really change the rules that aren't working.
So what would you say that would have been the biggest impact that COQC-SIDA has had over the last, say, 10 years?
I think the biggest thing that we've done is really bring the groups together to share a voice and share their opinions. So that whoever is listening to the community organizations in Quebec, is hearing the same story from everyone. And one other little project that I did not mention a little but important is called the [speech in French]. It's a service that matches people who don't have health care coverage because they don't have status because they might be a student, but they don't have access to the health care system. And it matches them with doctors who can follow their HIV. We've also have a network that includes lab follow up and we use the programs of the pharmaceutical companies to make sure they get treatment. So we have over 100 people who are undetectable because of this program.
Oh, that's amazing. That's great. How long have you been with COCQ-SIDA?
I've been there since 2008. So quick math, 14 years.
And loving every minute of it. So let's talk a little bit about AIDS 2022. And I, you know, with the world at your doorstep, is it a blessing or a curse being at the helm of a major organizational partner?
Well, I think it's both. First of all, I think signing on, I had no idea how many committees I would automatically be a part of, and how much background work there would be. The organizing committee itself is really very little in terms of the work that's involved. But receiving the world in Montreal, gives us also a unique opportunity to have attention from the people who live here.
So from our governments, from the media, suddenly, it's not December 1, and the media cares about HIV.
Which is good.
Yes, that's very good. And are you, you're having like tours around the various organizations or with COCQ-SIDA, like office tours, things like that?
Well what we did is the conference solicited what they call educational tours. And so we made sure that our local members were involved in that in offering visits for delegates to the conference. A thing probably more important that we're doing in the context of the conference and, and the general population here is we're going to offer guided tours of the global village that's in the conference. So anyone from the general public can go to that. But it might be a little intimidating, just a walk into a big space like that. So we thought we would soften that and help people from the general public to come and discover what's happening in HIV.
Oh, that's fantastic. And so what's excites you, I mean, it's in your town, you're a major partner, what's exciting you about this conference?
I do find that these conferences can be highly overwhelming. You know, there's just so much stuff. And having a role in more of it than I did when I went to the one in Toronto. It's even more overwhelming. And I'm, I haven't really even looked at the program yet to see what things I'm going to go see. I have some ideas about what's going to be interesting news comes out of the conference, right? All that stuff about long acting, treatment and PrEP, which is going to be very interesting. There's gonna be stuff about simplifying treatment. It's always interesting to follow also the work on vaccines and the cure. So those are very interesting things. And then this year, in particular, there's going to be stuff about COVID. And the impact of COVID, on the response to HIV, and maybe how we might have applied the lessons from HIV to the COVID experience. But I think those are interesting things that are going to come out of this conference.
Yeah. I would think there'll be stuff on monkey pox at this conference?
Oh, yeah. Yeah. Late breaker, you know, and our public health has also announced that anyone who is coming to the conference can get their monkey pox vaccine.
I may get mine. And, you know, I was going to ask you, you, because when I go to conferences, I always feel you know, it's confusing. There's so much, there's so much to do. And I was going to ask you, like, what approach do you take? Do you spend a night and go through the program? Are you just kind of winging it?
I think, you know, at this point, I have many commitments on my time. So I'm probably going to look at the program for those times where I'm available, and see what might interest me. Yeah, I've participated in a couple of AFRAVIH conferences, which is the Francophone international conference. And I do find that that's what we need to do. You know, you, you look for the people, you know, who are presenting who you can be there to support but you can also understand what they're doing. But you also look for the subjects that are interesting. And, you know, there's always a lot of really interesting things. And I just like to just for my own self care, just like to not be too demanding on myself.
So program breaks, things like that. You don't have to see it all. It's impossible to see it all. And luckily associated with the conferences, a positive lounge. So, as an HIV positive person there's this little retreat to go to away from the bustle of the conference.
Yes. Do you think that there'll be because usually there is especially at the international conferences, some sort of activist disruption or something going on?
Oh, absolutely. Yeah. I'm not sure. I'm not sure if it's wise to disclose what I might know already, because we don't want anyone to stop it.
Right? By the time this airs...oh, no, there will still be time to stop it. So that's good, though.
Yeah. I think, you know, in order to capture attention, people try to be creative about their interventions. So there will definitely be the classic things, but also, you know, some innovative things. I know, a group that's developing handheld fans with messages on them so that they can, you know, there'll be motion in the room, and the message will be there. And we have something particular planned, as well to underline the problems that we've had with people coming from countries who need visas to get here, because that has been a big problem. Delays and refusals of people, because the other person in the embassy doesn't think the person will leave Canada at the end of their visit.
Right, right. Right. Right. I look forward to these, well I don't know if look forward is the right word, but I gotta I look forward to these disruptions. Would you consider yourself an activist?
Well, a bit, I feel like I, at this point, I'm probably a little more sedate than that. I have a vague memory of long time ago, and we, there was a conference in town and we marched to the offices of the Public Health Agency, and we did a die in but we're all a little old. And we took our time to descend to the, to the ground. Nobody dropped down. Because we didn't want any broken hips. So I think that I often in my work, I often take a much more diplomatic approach than an activist approach.
But I'm game for some activism.
I mean, is there a tension being an executive director? And how you present yourself? Is there's a tension there?
I think so I think that I have a style as well, so that we usually in HIV, we have a seat at the table. And that's an important thing we want over the years. When I'm at that table, I think that I can make a point without being rude. And without being disruptive.
You know, I think that's important to me that we continue to collaborate, because the other people around the table are our allies. You know, what's not our allies is the procedures that they are bound up in. But it's our role to point that out, and work with them to change those things.
Right. So somewhere along the way, you made the shift from law to HIV sector. And I'm trying to figure out the timing. But I wonder what how did you get there?
You know, when I went to law school, first of all, I started in 1984. And I always like to say, I think that my first day of law school was the day after the Mulroney government got elected for the first time, and then allowed me to look around the room and see who was smiling and who wasn't. And so and identify who might be my friends. And I went to law school with the idea that I was going to do something useful, that I was going to equip myself to do something useful in society and not to not to go get rich and not to become a real estate lawyer. That was my orientation for the whole time. And after I finished, I never really, I didn't work in any kind of private practice. I started working for a youth community organization. And I was giving legal information to members of the community.
And also working on workshops to offer to students largely in alternative high schools, about their rights and about different aspects of the law and how it affects them. I did that for four years. And it was part time. So I was working somewhere else part time that was very demanding. It also at the time, the fun part was we had a program called the Do It Yourself divorce program. And so I would teach people how to prepare their own divorces, their own consensual divorces. So they didn't have to pay a lawyer to do that. They would prepare all the papers, we would sign the papers and they would go file the papers and have it the easy way.
Oh, the easy way's always good.
Yes. So after after four years of that, the executive director of the youth organization left and I became a candidate for executive director, and then I became the executive director. And I was there I was executive director for five years. So I had nine years total at this organization, which is very feminist and very oriented to consensual decision making, like real consensus and collective management model. So it's very hard to be the executive director of a collective where you don't really have any power, but you have all the responsibility, right? It really changed the my approach to how groups make decisions. And I think that'll stay with me forever.
Oh, that's a great lesson.
So then, while I was the executive director, I had my HIV diagnosis. And I always like to say that I'm the cautionary tale and not the example to follow because I was diagnosed very late, I had a CD4 count of four, I had a PCP pneumonia. So it was zero to AIDS in one doctor. Then a couple of years later, and that was a good place to find out I had HIV because I had the support of the group. And it was a supportive working environment. And then, two years later, the executive director of a local English speaking AIDS organization left and I presented myself for that. And that's how I went into AIDS full time.
Wow, that's quite a story. When we spoke last time, you had mentioned that you like to sort of position yourself as privileged when you tell your story. And I thought that was a really great practice. And what why is that so important?
I think it's important for me, because I've had, you know, despite the fact that I was diagnosed very late, I've really have of the fairy tale experience of living with HIV. First of all, you know, I'm an educated white man in North America, I have access to all the treatment I need. I have a supportive group of friends and family. So I have all the advantages to help me live well with HIV. And I always think of the people who don't have those advantages. So there are a lot of people who don't have family support, who don't have a network of friends who can help them who don't have, you know, I'm my reflex as an educated as a, an overeducated person is, if someone in the pharmacy tells me something is wrong, well, I'm willing to argue it.
And I know where to look to find the arguments.
I think it becomes my duty to do those things for the people who can't. And you know, and it's important for me to recognize that my experience of HIV is not everybody's experience of HIV. And for some people, it's a lot more difficult. And so it's very important for me to remember that when I do my work.
Right. I mean, you gave a great example of, I'm doing air quotes, but being over educated helps you sort of advocate for yourself in many ways. So how is your, do you think your schooling, your legal training sort of prepared you for the work you're doing now?
I think, I think the law school was very important. Law school taught me how to read how to read quickly to grasp the concepts of what I was reading, because there is so much reading in law school thing, you won't survive if you don't manage it. But it also helped me to construct arguments. It helps me to write as well. And, and for me, law school at McGill was important because a good portion of that reading I was doing was in French, as well. So the case reports are in French. So really helped me develop my more formal French, which is invaluable to me today.
Right, right. Oh, interesting. Now you are also a blogger.
You kind of an iffy blogger these days.
Well, yeah. But I've read your, a lot of your your blog, and, you know, it's titled "Talk to the hump, the ravings of a gay man living with HIV and lipodystrophy". And on the blog, you write what you call AIDSiversaries, sort of like personal reflections on the anniversary of your diagnosis, and written in the most charming and insightful way, I have to say, and you do movie reviews, and have some standalone articles on certain issues. So I just want to chat about some of these issues.
If that's okay. But first off, I want to talk about lipodystrophy because you're very upfront about it and you joke about it, it's in your in your blog title. And for those of you who are unaware lipodystropy refers to changes in body fat that it can affect some people living with HIV, either a build up or a loss of body fat. And as far as I know, like the actual cause is not completely understood. They think it's medication but not sure. So is that, am I true so far? What do you know?
Yeah, I think probably there are all kinds of things that it isn't just like what dystrophy that makes me the shape I am today, I owe a lot to laziness as well. But it really started for me, it really started, when I started to be disturbed by it. I hadn't gained as much weight as I have. But I had started to develop a heart rate. So that was associated with one of the drugs that I was taking at the time or maybe more. Mostly, the pharmaceutical companies spent a lot of time pointing fingers at each other. That was their response to lipodystrophy like, "It wasn't our product, it was theirs."
Or, you know, this is a natural thing. But I saw that you know, it's important to you have to laugh at things. If you can't laugh, you might as well give up.
Well, it's very important. But I also don't think lipodystrophy is spoken about enough. Is there a treatment? Is there medication for lipodystrophy?
Well, there are treatments for lipo, not for lipo accumulation, like I have, but for what's the opposite of accumulation? It's the other the other aspects of lipodystrophy that I haven't. Yeah. So there are a lot of people who had fat loss in their cheeks, for example, and they became, you know, became very visible, you know, a face of, of HIV. And there were some treatments, but they are considered cosmetic. You know, it really had an impact on people. And there are people who have done research on the impact of lipoatrophy, that's what it's called, on people's quality of life, people tended to isolate themselves because they didn't want to be pointed out and sort of have their status disclosed, [right], by their faces. So there were treatments and they were kind of fillers. They weren't permanent. Some of them had problems later on. And they were expensive.
Now I think there was a foundation for a while that helped pay for that, but not, not in that continuing way.
Yeah, it's a tough situation. I know somebody who had lipoatrophy is at least who's the filler got infected, and it was a whole mess. But I appreciate you having that in your title and sort of addressing it right off. I think that that's really cool. So in AIDSiversary 24.
Hey, my silver AIDSiversary is coming up.
Oh, that's right. That's right. Well, congratulations. You, you say when writing about lessons, we should have learned from HIV to apply to COVID when you speak about poor choices of words, and how they can have lasting effects. And you use the example of social distancing. And it never dawned on me about how, you know, really, it should be physical distancing. And not social distancing. Could you talk a little bit about that?
Every time I hear the term, I realized the horse is out of the barn and it's never gonna go back in. But every time I hear the term, the hair on my neck stands up, I find it extremely annoying, especially in a time and an experience, like the COVID pandemic, we needed people to be so you know, in solidarity with each other. We did not need them to be isolated, you can be socially connected, and physically distant. The term got out there. The Public Health Agency of Canada corrected themselves, but it's too late. They started saying physical distancing. But it was too late. Yeah, too many people are still saying social distancing. I just find that unfortunate. And I feel like it's the product of not talking to people in the community before you put into place measures. You know, we're a little spoiled, I'd say spoiled, but it's not. It should happen. So this isn't the spoiled, it's the way things should be that the community is very present in HIV, that we're at the table. It was the product of a lot of hard work to have a seat at the table. And then COVID came along and we were just shunted aside and not consulted about any of the public health measures that were being put into place. We could have told them social distancing was an awful term and they should not use it. We could have told them that, you know, in Quebec, we had a curfew. So how does a curfew apply to people who are trying to use the supervised injection site? In a time when we're telling people not to inject alone at home? You can't do that when the police are going to stop you. So it's things like that, that were just not thought of in advance that could've be thought of if we had been talked to.
So I guess along the same lines around language, you mentioned how some people living with HIV in "23 and me" in your other blog about how some people live with HIV describes themselves as I'm like, I'm HIV, instead of saying I'm HIV positive, or I've acquired HIV, they just say I'm HIV. And you talk about how some people get angry or miffed about that, about how people claim themselves to be HIV. And I have to say, sometimes it does catch me off guard when people say that, and what are your feelings around that?
Well, well, first of all, I'm in a particular position in Quebec. So it could be, you know, when you hear it, it could just be a language thing. You know, there is that identity aspect. And there are a lot of people who are very insistent that, you know, I'm a person and I happen to have HIV. Or there are people who have, whose HIV is much more central to their personal sense of self. You know, I feel like it's a, it's a big part of me, I do everything I can to minimize the impact of HIV in my life, you know, in my personal life, and to maximize it in my professional life. I still feel like it's central to my identity. And I had a discussion once with someone about it, if there were a cure, would you take it. And it was, it was interesting was a little group activity that was organized in Montreal, and there were three of us debating whether or not we would take a cure if it was offered to us. And I thought, for me, there are several elements to that, that I really spent a lot of time adjusting to the idea that I have HIV, that I kind of know what I'm going to die off that I'm going to die earlier than some of my friends and siblings. But I'm not upset about that, you know, I've sort of adjusted my expectations of life. And am I ready to redo that? I think almost everyone I know, with HIV has said that after my diagnosis, I really went through a process of re-examining my values and deciding determining what was important to me. And I'm not sure if I'm ready to do that again.
Because it wouldn't be quite the conversation with yourself. Yeah. And I guess if people say I'm HIV, it's better than saying they're HIV.
Absolutely. And then there's the other big terminology thing about people who are very insistent that I don't have AIDS, I have HIV, right. And as a person who was once on a list of people who have AIDS, because of my state at the time of my diagnosis, I resent that, you know, we can all just admit that AIDS doesn't mean what it used to be. The term AIDS is no longer a prognosis. It's a very important observation, that tells us, you were too long before you were diagnosed, or you are too long before having treatment. You know, today, we come back from that state, and you can reestablish your help.
So it just doesn't mean the same thing anymore.
But I'm still attached to it.
Yeah, no, fair enough.I mean in AIDSiversary 22, you talk about this, about how organizations changing their names, like removing AIDS from their names. I mean, they may do it for other reasons as well, like for funding, do you think is that probably the main reason?
I think mostly, they say that they're doing it so that people are not afraid to come to them. And I feel a little suspicious of saying, you know, we're going to deal with stigma by hiding. That's essentially what it is right deal with a stigma associated with what we do by hiding it and calling it something else. I don't think that's helping.
No. And that's a very good point. I want to finish off this interview with well, a couple of things. One, am I mistaken or do you have another blog called The Adventures of Gait?
The Adventures of Gaetan. I think it only has two or three entries. But what it was, is I have a friend who's very sexually active who is about my age. And he has very entertaining stories of his adventures. And so I called it The Adventures of Gaetan. His name is not Gaetan.
When he told you know what, at one point, he was with someone. And he told them the guy his name, which is a very common English name. And the guy thought it was made up because surely no one's named that. And so we, we both had our own chuckle and said, Yeah, why isn't it a normal name like Gaetan? So that's why it's the adventures of Gaetan.
Excellent. Well, thank you. I was wondering about that. Okay, so I always close off with these this or that questions. Okay. So here we go. Poutine or tortilla?
Ah, that's difficult. I think tortilla is probably better for me.
Fair enough. Work alone or in a team?
See, either or. I'm gonna do the lawyer thing. Everything is, everything is a is a shade of gray. I like both of them for different reasons.
I don't think we have space on our website to put two answers, but I'm just making that up. Of course we can put that. Perfect teeth or perfect hair?
Probably perfect hair, I can keep my lips shut.
Exciting life but dangerous or boring life but meaningful?
I'm not extremely adventurous. So I would have to say boring and meaningful.
Attend a party or host a party?
Or none of the above.
We can go none of the above.
Or attend a party briefly and do a French accent.
We'll go with that. Thank you, Ken for being on Pozcast.
Hey, its my pleasure.
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 email@example.com. That's the number four and the letter U. Pozcast is produced by the Positive Effect, which is brought to you by Reach Nexus 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 with the Acme podcasting company in Toronto.