- Ballem, Hugh
- Betteridge, Glenn
- Golden, Anne
- Hendricks, Michael & Leboeuf, René
- Herland, Karen
- Higgins, Ross
- Leclerc, Roger
- Pattison, Penny
- Pinchuk, Earl
- Small, Karl
- Smith, Eric
- Sousa, Jose
- Waugh, Thomas
Hugh Ballem
…but The [AIDS] Quilt was a huge success. I was very, very, very satisfied. And it was really great for the community here at the time. That was its purpose, in a sense. To create something local that would connect with something global. That would also interface with the AIDS Conference, because it opened the evening before the conference itself. And it was specifically targeted, amongst other things, to the delegates. To get them outside of their meetings space and into a collective memory mode to see that there were other dimensions. The human dimension of the crisis. And locally it meant that, you know, a huge number of panels were made. We borrowed a couple of hundred. But all the rest were made locally.
Full Transcript (EN) / Transcription (FR) – Coming soon!
Glenn Betteridge
I think that ACT UP was a particular way of understanding volunteering or giving of oneself … It fit with my personality, my nascent personality, it allowed it to come out, this environment of intellectual-free for-all with respect for the people and their ideas. I’ve had to learn to pay attention to being strategic in the way one communicates in groups, because around the table there was always the understanding that we would arrive at a position, and that was our position, but they were hard fought. And so that’s the experience I’ve had working in legal clinics and other HIV groups … Like, in my paid work as well, but it hasn’t always served me well in more institutional settings and organizations. So, that was really interesting and something I brought with me. Because, there were incredibly bright articulate passionate people, and also people who were very strong who didn’t bring a university education to the table, but brought some really firmly held beliefs and wisdom, and that was super interesting.
Full Transcript (EN) / Transcription (FR)
Anne Golden
I’m sure people would argue with me, but I think, because video is so immediate. You can tape something and you can watch it right away. And that sense, that kind of revolutionary feeling about the first generation of video practitioners had where they could actually shoot and watch it immediately which was, you know, instead of developing your super 8 film in your bathtub or sending it away, was I think a huge change. But, I really think that when HIV/AIDS arrived on the scene it’s like, all these people who probably never thought they were going to make some kind of video, so then they turned around and did make them. Thankfully.
Full Transcript (EN) / Transcription (FR)
Michael Hendricks & René Leboeuf
Well, you see, our objectives were different than ACT UP New York. We already had a single payer healthcare system in Quebec, different from all other provinces. We have the one that ACT UP NY chose as their model as a matter of fact. It wasn’t called « the Quebec model », but that was the model. It’s the one that Bernie Sanders is supporting now, you know, single payer. It’s really the best, particularly for the poor and for people that are quite ill. In their research, CPAVIH had come across the fact that cancer patients in Quebec got almost free medicine in order to keep them out of the hospitals. Okay, the healthcare system in Quebec and probably in Ontario works the same. The system pays your medicine if you’re incarcerated, in the hospital, or some place, or an institution – you’re inside – but once your outside they don’t pay. So, of course, cancer patients want to get into the hospital so that they don’t have to pay for their treatments, and when they weren’t insured that’s the only way to do it. The Quebec government had come up with something called malades sur pied, the « walking sick », specifically for patients who had cancer. We wanted HIV+ people to be included in malades sur pied. It was great for anybody with a serious disease, a terminal disease – no, a chronic illness. It was to keep them out of the hospital and walking, living at home, and it was particularly effective for the elderly. It was a really good program. You paid two dollars for every prescription, so no matter what it was, you paid 2$. Now, already AZT [zidovudine] had been identified as an actor in treatment and it was declared as an experimental drug and therefore it was free, but it was administered by hospitals with university connections. And then, when Dr. Weinberg and company invented 3TC [lamivudine], it also fell into that category. So, our campaign wasn’t really about AIDS drugs, the only two that existed, it was about treatment for opportunistic infections.
Full Transcript (EN) / Transcription (FR)
Karen Herland
But either way people just got up on the escalators, right. And I remember a lot… My friend Sally – one of my dearest friends, who’s five-foot eleven and had long blonde dreads at the time, and was on roller skates – she got up on the escalator on her roller skates and – five foot eleven, with the skates, she’s a tall woman. [laughter] So, I remember her towering going up, and me being, “Oh, I better get up there,” right, following after her, but just the space she took up getting up there. And then we all came in and took over the stage and made so much noise for so long. And I remember that really clearly – unfurling banners and just taking space – really just taking space. And I remember so many of the people, like the doctors and officials and politicians and diplomats and the crowd looking, you know, variously surly and stern and put out and offended and frustrated and confused. But then at one point, we started chanting, “Join us.” And although no one – as I recall – came from the audience up on the stage, hundreds of people got up on their feet and applauded at that point. And that was just amazing. That was wonderful. So, I remember that really clearly. And I remember Tim, and I remember how important it was to actually name that conference on behalf of people living with HIV and how that really was a huge shift. And that’s probably the biggest legacy of ’89 was the insertion of a growing HIV-positive community and identity being recognized at the table.
Full Transcript (EN) / Transcription (FR)
Ross Higgins
The early enrolment in the AIDS course was very half and half, Tom could tell you more, but through the ’90s the percentage of men dropped. So, by the time I was teaching it there were only a few men in the class. But we still had a kind of ownership mentality over the whole subject. And there were some very smart women from Simone De Beauvoir Institute in the course. And this one woman, in particular, was making remarks of a certain – because we were always getting feedback, they had tutorials and stuff – and she was making remarks that you would interpret as homophobic. But it just happened that I had just been reading about women and AIDS and the whole symptoms for diagnosis, the revisions, and the exclusion of women. It struck me that the women who took the course were taking it not just out of compassionate interest, but out of personal concern. And that they had an impossible, you know, straight women, had no control over their own risk because they were getting infected because of bisexual men, or drug users, essentially. So, the next year, the second year that we taught the course, I mean, I had brought this up in our team meetings, we restructured it to start with women in many ways. There was never any kind of homophobic comment after that.
Full Transcript (EN) / Transcription (FR)
Roger Leclerc
En fait on voulait faire financer le Comité sur la violence, d’une part, puis on voulait toujours la revendication, la reconnaissance de nos droits, la reconnaissance des conjoints, etc. C’était global, mais cette fois là, particulièrement, on voulait faire financer le Comité sur la violence et on voulait, qu’il y ait un budget gai, pas un budget sida, ça on l’avait obtenu par le ministère de la Santé, mais on voulait que le gouvernement reconnaisse une case gaie au ministère de la Santé, mais pas en santé mentale, parce qu’on nous disait toujours : « Mais présentez des projets en santé mentale il n’y aura pas de problème. » Ce n’est pas un problème de santé mentale, vous avez des problèmes avec mon homosexualité. Alors, on voulait la création d’une case gaie, alors c’était les trois revendications. Financement du comité sur la violence, création d’une case gaie, et reconnaissance de nos droits.
Full Transcript (EN) / Transcription (FR)
Penny Pattison
It was really exhilarating. It was a giant fancy conference room. It was like being at the UN or something. [laughter] And I’m sure we looked like we did not belong at the World Medical Conference. We definitely stood out from the crowd. I’m sure we all had hair colours from the crayon box, and were wearing combat boots and rags. [laughter] Yeah. But, it was great. And then, I think, everyone was also kind of like, “Wow! That happened! What next? What are we going to do next?” And, like I said, it was really day-to-day. What can we accomplish? What can we do? People finding each other, and different voices emerging; definitely there was a really strong presence from New Zealand. I don’t know if you met any of those people. They were really organized around sex work, around needle exchange. They had functional ongoing needle exchanges that existed. And we were just like, “Wow, you guys are light years ahead of anyone else in North America.” No one, and certainly not with government money, was doing that kind of work here. There was no harm reduction groundwork that was even done yet. So it was really inspiring just to see what was possible, what people were doing in other places, and how really outspoken women in the sex trade were, who were just really resetting ideas. I mean so many working women were really getting scapegoated with as though they were the problem, and for them to be able to focus on the fact that they were doing so much work in sex education and setting the agenda. They were really part of the solution. It was really good for a lot of those voices to emerge and for people to meet each other.
Full Transcript (EN) / Transcription (FR)
Earl Pinchuk
That’s when I started keeping my archives, was right at that time. So, 1990, the news would come on, and if it was about ACT UP, or anything that was going on in Montreal, gay or AIDS, I’d press “record,” and I knew that I had my little archive going on here. And so, Michael Hendricks, when he found out I was doing this, he said, “Oh, you should be the head of the media committee. No one else is doing that.” So, what I did, was I would scan newspapers, magazines, every week, and photocopy whatever I would find, and give it out at the meetings on Wednesday night. So, people would hear what was the latest coming out of the world of AIDS. Not just Montreal, but internationally. Particularly treatment and data. We had, I guess, our own treatment and data committee. I would say that ACT UP Montreal really looked—everybody looked up to the mothership, ACT UP New York, because they really did start the ACT UP movement. But I think by 1991, there probably were eighty chapters, maybe, worldwide. We had ACT UP Paris contact us, and say they were going to be in Montreal, and they arrive at the meeting with their ACT UP Paris t-shirts, and it’s like a fraternity. It was like brotherly love.
Full Transcript (EN) / Transcription (FR) – coming soon
[youtube https://youtu.be/geGoUg7DfmQ]
Karl Small
Well, I remember being really excited about the conference beforehand. I remember making vegan black bean dip for the Toronto anarchists I knew who’d be coming, and I was so happy that they were happy with my black bean dip [laughter] when I showed up at the centre. I remember some people from somewhere else were staying at my place that I was putting up; I forget who. And yeah, I remember there were big meetings at that centre every night, which I’m sure at the time were, you know, long and difficult and all of this. But I just remember it as being exciting. And I guess the… I mean it was all really striking to me. There was the Opening, where we kind of marched in and stormed in – though I mean, we didn’t have to “storm” – and we basically held the room. It was Mulroney, right. And Mulroney delayed and delayed and delayed. Yeah, so, it was really good. I remember he was there with me [motions to his partner] and we were there with our kid who was very, very… What? Ten months old in the stroller, or something like that, or less than ten months old. Jeez. Anyway, that was fun and it was… It just seemed really good. And it was also… I’ve seen it a few times since, but not often, it’s a situation where you’re up against an institution or something like that, that it’s obvious that the institution has decided beforehand that they’re going to back down if there’s a confrontation. And so you just have this feeling of you don’t know they’re going to back down, but you’re pushing, and every time you push you’re slightly surprised but happy. But also, you know, it’s not like you’re having to fight with baseball bats to get in or anything like that either.
Full Transcript (EN) / Transcription (FR)
Eric Smith
It was really exciting. I mean, especially the conference. I mean, I was twenty-one, right? And it felt like we were really doing something. I really admired the New York people. And it just felt like we were doing it with “The Pros”. I felt really lucky that it was in Montreal, that it was in our city, and that we got to host something that really felt like it was important. Sex Garage, that was more just anger. And, also exciting. But it was less serious. I wasn’t nearly as personally affected by AIDS and HIV as people a little bit older than me. Only because, by the time I was having sex, we really did know what to do. So, yes. I mean, I was lucky I think, just in timing. That the riskiest period, I just missed by a few years. Just by when I was born. So in a strange way it did feel like, even then, it felt like AIDS was sort of the generation, that we were sort of already a generation closer. Which isn’t true. I mean, obviously, people my age did get sick. But fewer. And people I know now, who are my age, who have HIV, are, you know, they are okay. They’re in treatment. The treatment obviously changed. It stopped being nearly as lethal.
Full Transcript (EN) / Transcription (FR) – coming soon!
Jose Sousa
CTAC [Canadian Treatment Action Council] was mainly started by – I forget his name. In New Brunswick. He was really the force behind it. But ended up that Louise Binder kind of took it all over. And almost became President For Life, or until she wanted to go. But that’s the other privileged thing, because she used to be a lawyer and has a great pension. So she can do whatever she wants. You’re limited with the amount you get on welfare, you can’t do all that traveling, you can’t. Even just energy-wise. I mean, she can get a maid to do her house. And probably does. I’ve always found some type of elite in the movement. Even back then. Now, it’s mainly them. I mean, when you talk to leaders, it’s like… they’re getting very healthy salaries and all we did, everything was… there was no pay. Because, first of all, if you got paid, you wouldn’t get your welfare, but there was actually no money for activism, or for the little guy. And then they started, the groups basically started following the money. Which became a problem, because the money was associated with services. That’s how it changed into services. But even then, we had trouble. Because the money was dedicated to services, you couldn’t. It was by law, those letters would tell you, “You cannot use this for activism.” So it kind of changed a bit and… quite a few people got great careers. And others just got… kind of pissed off at the whole thing, and went to different areas. I went mainly into the medical, because of Kalpesh. So when CAQ – Community Advisory Board of CTN, which now is CIHR-CTN, which… I started there around ’94. But just as a visitor with Kalpesh. And those were kind of more, it was more rewarding?
Full Transcript (EN) / Transcription (FR) – coming soon!
Thomas Waugh
And we developed some relatively innovative internship projects—here and there—with community organizations whose mandate was not queer or AIDS-related, but they worked very well. Students got so much out of these things. Some of them didn’t, but most of them did. And we saw immediate results, in terms of people making career choices or study choices based on the epiphanies they had here in these internships. So, that was an exciting aspect of the [AIDS] course. The very first day of the course I stole an idea from somewhere—I don’t remember where—and had everyone present in the room, if they wanted to, write on the blackboard the names of people they knew who had died of AIDS. The whole blackboard was covered. That was in the fall of 1994. It was a really stunning moment. It didn’t really hit us the fact that students had died. Some students I had taught and some of my friends in the university community. So, there was that element of personal processing of bereavement and mourning and anger that this had been allowed to happen unnecessarily. And hanging out a little bit with these doctors—like Nobby and my own personal doctor Erwin Goldstein—sort of added another layer of, we were really tuned into what was going on in the research community.
Full Transcript (EN) / Transcription (FR) – coming soon!
[youtube https://youtu.be/Pm5UNV4DiYw]