Toronto Interviews


Julia Barnett

And it was AIDS action – it was the AIDS movement that shaped my anti-oppression framework. It wasn’t books. It wasn’t Marxism or whatever, socialist feminism. I mean, it was socialist feminism because I felt like I was practicing what I believed was socialist feminism at the time. And it was truly building an anti-oppressive movement for change – both in terms of the state, but also in terms of people’s beliefs. I don’t know if I’m making myself clear, but. For me, AIDS ACTION NOW! and the AIDS movement and the harm reduction movement – I find those were my pillars of political change or action in a period of time that was starting to shift to the right… But the struggle, the AIDS struggle, in all of its manifestations… to me, the AIDS struggle, still to this day, is the complete and utter capitalist crisis, that’s not of the market alone. It’s the result. It’s the capitalist crises of humanity. AIDS is symbolic to me of that. It’s gender, race, class, sexuality, desire, and economics intertwined, and all of that has shaped me and my politics. That’s what the AIDS movement has done for me or what I was part of, and still I see allying to it, or an allegiance to it. To me, it’s still the same crisis and it’s only worse today than it ever was before because of how many who are impacted.

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Glen Brown

Richard Schabas was the Chief Medical Officer of Health for the Province of Ontario, not a very likeable guy. [laughter] He had been sort of controversial for a while in not dealing much with HIV and AIDS and in not approving anonymous testing. But what got him into the headlines was at one point he had suggested that HIV be reclassified from communicable to virulent. And what that meant was that it would also give him quarantine powers. And so the reporter, Kelly Tohill from the Toronto Star asked him, “Well, when would you use these powers? Like, what kinds of behaviours would prompt you to do that?” And he basically said, “Having sex. And it didn’t matter if people wore condoms or not. If you were HIV positive, wearing a condom wasn’t sufficient.” Which was kind of contrary to all of the messages that everyone was saying, which was that condoms work. He was saying that they were not sufficient if you were HIV positive. And so that became a story on the front page of the Toronto Star I think, on a Friday. So, we photocopied it and said, “Fire Schabas Demonstration” and had a demonstration on the following Monday, I think. And sent people, this was before emails and before Internet, on the streets to hand these out at gay bars, and had one of the largest demonstrations we ever had. The 519 hall was packed. I don’t think we burned an effigy; I think we were getting tired of that by that point. [laughter] But we went down and had a demonstration outside Queen’s Park, and actually had speakers from even the mainstream AIDS organization, even the AIDS Committee of Toronto. The executive director spoke at that and said, ”Yes, it is time. He must be fired.” So, that became embedded in our demands for the provincial government. They couldn’t actually fire him, but what they did do is certainly move it out of his control and also began to accept our demands for anonymous testing. And then I spent way too many meetings navigating back and forth about what that actually meant to have anonymous testing and still have this Act which doesn’t really allow for anonymous testing.

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Renee du Plessis

Well, my father is South African and had been a member of the ANC (the African National Congress). And through the ANC we were always involved in the various liberation struggles, whether it was the IRA (the Irish Republican Army)… those kind of movements. I grew up in that world. My parents had always, because of their life, had always made us as children very aware that we owed the “community.” We owed the community – our people, and our people were anybody who was actually dispossessed. So, all my life I’ve always been involved in various actions and as an adult I always tried to choose non-mainstream organizations, because I felt those were the ones that never get funding, support, and often they were closer to my belief about changing society. And so that is one of the reasons I got into AIDS ACTION NOW! – but why do you stay, you know, or make any sort of commitment? Really it had to do with, for me, these were the people who were the most affected in a very immediate way, from what I was reading and seeing. And they had organized themselves and they were articulating the possible solutions. And so I thought, “That’s great, because I don’t want to be articulating and I don’t want to be creating.” I like the idea of the people most affected taking leadership and defining what my support would be. And that’s how it’s always been, whether it’s in First Nations work or women’s work, I have always seen it as being, “Who’s the most affected by the particular problem that the group is representing?”

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Dionne Falconer

And you made me think about something else around Black CAP. So, because people were coming together… I mean we were coming together around race. Like, there were things for PHAs – the people living with HIV – who were connected to Black CAP. Like Black CAP had a support group, but it had everybody in it. It had men, it had women – I’m trying to think if it had anyone who identified as lesbian – but it had gay men, straight women, bisexual women, bisexual men, and I think that was unique, right, that you had that support. And that lasted for quite a while. And Black CAP would even have retreats and it would be everyone coming together. I think that was a very, very different and unique piece of where people were bonding. Race and living with HIV were also bonding people together. So, in terms of sexual orientation, it didn’t become as much of a “drawing this line.” So, I think that was actually something that was something different. You made me think of that as you were saying that.

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John Greyson

That’s when “Zero Patience” was born. And “Zero Patience” was an attempt to take some of the energy and activism and attitude and anger of ACT UP and AIDS ACTION NOW! and put it on the big screen and get it into theatres and multiplexes. And we didn’t get quite as far as we’d dreamed, but it did go pretty far in terms of getting theatrical release in 13 countries, and being broadcast all over the place. I mean I still get postcards saying, I can’t believe I just saw your strange AIDS musical on cable TV in Akron, you know, or Whitehorse. So, the possibilities, the strategy was to use that Trojan horse called the feature film and use in particular the Trojan Horse called the musical, which is frothy and fun and the most inappropriate of vehicles for something serious about AIDS, but that was in fact the point, was to say that it’s you know… it’s the end of business as usual. We need by any means necessary to fight this and humor and music and pop songs are actually coming from the grassroots – a fight back strategy.

The way the film got taken up within the AIDS activist community was interesting because it sort of split the troops, I think. I mean my memory of it is that some, some loved it and some embraced it, and some really didn’t like it. And sometimes it had to do with style and… We were using purposely queer musical choices of the time – so, The Smiths, Pet Shop Boys, Erasure, Ten Thousand Maniacs… And taste of course is the most slippery thing, and that stale-dates the quickest musically. What’s cool one year is old fashioned the next, etcetera, etcetera. So, we’ve almost reached the point where it’s nostalgic and you know will be hip in an ironic, camp way.

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Sean Hosein

And I might point out that Public Health and the government did very little in the first decade of the HIV epidemic to help people who were ill and who were dying. You know, when you had the Tylenol scare, when you had Legionnaire’s disease, when you had anything like that Public Health moves swiftly and rapidly to deal with that – Toxic Shock Syndrome even. But, for the first time you had people of a minority who were despised and who were dying and the official policy was official silence and official indifference. And I think gay people at that time felt abandoned. They are citizens just like everybody else and it caused a deep sense of alienation among people with HIV and people who were their friends, and gay people as well. It was a double whammy for them. The state was trying to deny people their civil rights and they were actively opposing measures to help people with this plague. And that official indifference made AIDS far worse than it would ever be. Its spread was what is described as exponential; it means extremely far and fast. Had they acted in a responsible way – authorities around the world – when this broke out, HIV would not have spread so far in Western Europe and Canada and other countries. But by the time they finally started to act it was too late. It was awful and you could see this happening again in West Africa with the Ebola epidemic in that region when there were just a few spots happening in the most affected countries and, again, the officials and governments did nothing because Ebola was affecting poor people in isolated areas.

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Susan Kasurak

So, when I met the AIDS ACTION NOW! folks I was pretty young. And as I said, I was studying and got involved with the clinic support. AIDS ACTION NOW! was absolutely essential to gaining an interest in activism, figuring out what worked and what didn’t. And to this day when I go to a protest and there’s speeches that go on for an hour, I think back to those meetings in AIDS ACTION NOW! about how, you know, that’s the quickest way to lose people. And I think back to all the discussions that were happening at that time about how to organize something that will be effective. To this day I think about how those lessons could be really helpful now. But, for me, it was really the only time when I’ve been able to be involved in that kind of really meaningful organizing; what felt like organizing to win. I’ve been involved in all kinds of things since then, very little with a direct action focus and very little with that kind of sense of urgency of a crisis, and I think that really shaped it, right? It’s a crisis. And same with the abortion fight at that time; both were kind of single-issue crisis campaigns with direct action associated with it.

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Gary Kinsman

I mean obviously it gets more complicated later on, but at this point in time, no, we were a political activist organization. We were not interested in being an AIDS service organization or getting that type of funding, because we’d seen what it had already done to other groups. Now, different people in AIDS ACTION NOW! would’ve had different understandings of this. Sometimes, it was simply put forward as a division of labour between the AIDS Committee of Toronto or the PWA Foundation, which are going to do the basic educational work and support work and connect people up with social services and we’re going to focus on the treatment stuff, but sometimes it was also put forward as a more critical analysis of those groups too. So, those two positions co-existed within AIDS ACTION NOW! and certainly it led me to see more of the ways in which the AIDS service organizations had gotten transformed from these community-based AIDS groups that wanted to do more, into these much more professionalized board-of-directors staff driven types of organizations that, you know, reproduced a particular form of organization that was in some ways quite similar to how state forms of organization are put together.

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Tim McCaskell

And when this disease started happening it was like – well, this is a disease. Nobody thought about medicine as a political terrain. That just wasn’t anything that we had ever been involved in. Certainly there was the choice movement, and the women’s health movement, which peripherally abutted on dealing with the medical system and how it could be biased. And we knew how the medical system was biased in terms of psychiatry and all those kinds of things. But politics regarding disease was something that I certainly hadn’t ever really thought about. As well, the people who flocked to the early AIDS organizing, tended to be people who were interested in social services because all of a sudden people were dying, and you needed people to take care of people. It was social services and education. I was working in education, but they were doing a good job so I never got involved. It wasn’t until those first AIDS ACTION NOW! meetings when we began to realise that what was happening in the hospitals was atrocious and there was no money for research, and there was no funding for education, and nobody was talking about this; and public health was not interested in us at all because we weren’t a significant group until suddenly it occurred to them that we could infect other people. We realised, “Shit. These are political issues and there is political stuff that needs to be done here.” It’s not just a matter of curing the disease; it’s looking at the social context in which this disease is developing and figuring out what we can do at this point to try to stop, or slow down at least, the dying that’s taking place.

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Anthony Mohamed

So, there were two other groups that I remember joining at that time. One was Zami, which was the group for Blacks and West Indians. And being from Trinidad it was wonderful to find a place that was culturally respectful and also a very lesbian and gay affirming space. It was a small group at that time and, you know, we’d have some discussions and then we’d go for ice cream. That was kind of the essence of that group. That group turned out to be wonderful. It was also very African-Caribbean and that was great in terms of the cultural aspects, but I found my South Asian heritage made it important for me to find a lesbian and gay affirming space for that. And there was a group called Khush [Khush: South Asian Gay Men of Toronto]… And everyone met at the 519 in those days. You need to understand, it was the hub of activity. There were no other spaces. So, Khush met there on Wednesdays, the lesbian and gay youth was on Tuesdays, and Zami was on Fridays, I think, so it was like, my week was full going from group to group.

And then AIDS hit. And it was like, “Oh my goodness, we have to do something here!” And there wasn’t much to do. People were scrambling. We had no messages. We didn’t know about anything called safer sex or anything like that at the time. It was just people were dying and it seemed like governments and health care systems were not responding appropriately, and as a result we needed to do something for ourselves. That’s what we realized.

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Eric Mykhalovskiy

Okay. I’ll just tell the story. It was about class and dying, basically. It’s a story about class and dying. We went to interview someone who lived in Cabbagetown, and the guy we were going to interview was the partner of the guy who was quite sick and was going to die soon. We wanted to learn from them about the work that was being done around trying to create conditions – what was it like? What was the work of dying? And we went in, we walked in; it was this really beautiful neighbourhood, and I know the neighbourhood. It wouldn’t have been the first time, but, you know, you’re seeing it. They lived in the house. It was a detached or semi-detached house and you walked in and it was sunlight inside, beautiful. He took us into his kitchen and I remember it was gorgeous, lots of light pouring in and he had a lovely table and a beautiful, beautiful environment. And he started to talk about what he was able to do. His partner was upstairs and too sick for us to talk with. And he had not only all the formal services that were available. He had been able to take time off work to be with his partner. He had a care team and he had my friend the nurse, who was on the care team, and this person and that person who all have time to do this kind of stuff and support his partner, plus all the, you know, home care and home-making services that are available. And it was just extraordinary that this guy had this possibility to die upstairs in his room. And then I think it was either before that or after, we actually interviewed somebody who – it was amazing – in the hospital in the advanced stages of HIV, but he was going to die alone in the hospital, and a poor person. I think that person was an injection drug user and was just not that… there’s lots of support in that community for sure, but in this particular instance, had a really hard life. He was somebody who was not from Toronto, and isolated and had nothing, had nobody, had very little. And so the visceral contrast, right, for him and for me, talking with him about that… that was one example of seeing the fine grained, which I guess is what you asked about. The real texture of people’s lives and what could be possible, and what they did and were able to do or not able to do because of certain social circumstances that they were in. Those things happened throughout that project in a really profound way for him and for me, certainly for me too. Like, I remember coming out of that… I just remember coming out of that Cabbagetown home and we walked for blocks and said nothing because it was so obvious what had happened. It was just amazing how horrible, horrible, horrible – good for him, but otherwise horrible in a way.

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Brent Southin

Well, we came up with the plan. I think Mark Freamo and I and his partner went to meet pretty early on with the NDP when they first got elected. We said people can’t afford these type of things. And we had already tried to make the campaign with seniors’ groups and women’s groups since it shouldn’t just be for AIDS. And they kept offering us that. “Oh, we’ll give more AIDS drugs,” and we’re saying, “Well, if people need drugs, they need drugs,” and I don’t think that sold well either. Yeah, early on we came up with a plan and then tried to meet with them and then had many, many discussions and we were told that there was a recession and we can’t do it now and wait till later. So, always, the same lines that you get. There were many other steps in that, many letters and Bob Gardner wrote whole briefs but we’d meet, we’d meet again. The NDP was having a conference with Bob Rae in Hamilton. That might’ve been later, like ’92 or so, and Greg said, “Let’s organize a demo with the Hamilton group,” which we did, but they didn’t show up. So, there are three of us – Greg, me and one other. So, I said, “Well, lets go in,” and I had a pass. But if they stopped you at the door because you don’t have a pass, you were stopped! So, in the end, I got in. They stopped Greg. Many people had to stop Greg. He was pretty angry. [laughter] Because he didn’t have a pass, and it was like, “Okay, he’s really friendly.”

So, I interrupt Bob Rae’s speech and then he met with us – Greg and myself, with Ruth Greer, who was the health minister at the time. And they again said, “Oh no, we can only do it later maybe.” And then we said, “Well, on World AIDS Day we’re going to burn you in effigy if you don’t do it by then.” This was like, in November. The day before World AIDS Day, they announced Trillium, the drug plan. People who worked in his office said that was why. They had no intention of doing it.

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Douglas Stewart

I think it’s interesting because part of the larger context here is trying to identify a space for Black queer people to be able to name and identify our own experience, and to figure out what life can look like beyond that. Let me just say, personally, that’s why I got involved. And then other people came with some of that, but other interests as well in terms of being in those spaces for those conversations. And so I think that part of that was also really figuring out where and when and what that looks like in relation to different kinds of movements that are part of my identities, so being queer, being Black. What’s also important is that that’s what I and others were interested in doing, but it was not necessarily what other people were interested in. Also, what those movements were interested in doing with us. And so it was really about being able to look at some of those spaces and be able to challenge those spaces. And part of that is to be there, to go in there and knock and say, “Hey, what are you doing around this? And what’s happening with this because here’s a conversation we are interested in having.”

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Darien Taylor

One of the things that always used to bother me about the pamphlets around prevention and the pamphlets around treatment was that the prevention pamphlets looked expensive and glossy and sexy and fun. And the treatment brochures always looked… they were kind of a granola paper, a bit newsprinty. You could really see the values. The graphics on these brochures were fun, and from that we basically decided we’re doing something. We need to do something and we had no idea what to do. It was interesting because it gets back to that point that I made earlier. I can criticize other people and say they didn’t know what we wanted, but we also didn’t know what we wanted. In sitting together with this woman and trying to decide what we were going to do.

We wanted to do something that was arts-based and international because both she and I had lived overseas. She’d lived in China and I’d lived in Zimbabwe. We sat for days and we couldn’t figure out what it was that an HIV-positive woman would want to do with a small Canada Council Explorations grant. That was what we were going to go for. What would we say? What we’d do? It didn’t even actually come to us and we didn’t know how to write a grant, and we had George Smith come over to her place. I remember she made this nice Japanese soup and George just told us, this is how you do it. So, we got our idea and it was an anthology of women living with HIV. Now, this is in a time when we knew a dozen HIV-positive women in Toronto. We wanted to do an international anthology of HIV-positive women. There were no AIDS organizations for women at that time and we didn’t know a single other HIV-positive woman in any other place in the world. So, we did it. We just did it. They tell you to do it; you carve it into small pieces.

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Robin Turney (with Sri)

Prison News Service also gave a platform to prisoners to publish whatever they wanted uncensored. Jim and Sunday were initially at least some of the people behind Prison News Service. Certainly, Jim was the driving force while he lived until he finally tried to pass it off onto other people, and then it just collapsed. Basically, it was anarchist-driven but the idea was that anybody that is political or a prisoner, period, can publish anything. I remember running afoul of an individualist anarchist in Montreal. He said he objected to the fact that there was Stalinist stuff in Prison News Service that is being distributed at the alternative bookstore in Montreal. And so he’s a stupid individualist. He thought the Collective – the Prison News Service Collective – should have published something to counter or to discredit what this Stalinist prisoner had published, and I said that’s not the function of Prison News Service. It’s to give them a platform. He’s one of those people where I said this like ten times, and it’s like I was talking at him and not to him because he didn’t get it. Then he started going on about what the Stalinists did in the Russian revolution, and I said to him, “If you think you can tell me anything about the Russian revolution that I don’t already know, you’re talking to the wrong person.” So, you know, I couldn’t get through to him. Purist anarchists like him didn’t like it; they didn’t make the leap to the fact that it was for prisoners. They thought there had to be an anti- to everything that wasn’t anarchist everything, everywhere in the newspaper, but it was just ridiculous.

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