Thirty years ago, in February 1988, AIDS ACTION NOW! convened its first public meeting. Arising out of a fierce and fabulous gay liberation movement that had already consistently confronted police violence and state oppression, their activist work has been absolutely vital in the fight for health justice in the Canadian context. At the AIDS activist history project, we have learned so much from interviews with activists in Toronto about the important early years of their work. George Smith was a vital part of that origin story, and we are delighted to lift up and explore a bit of his work in this feature.
Nous sommes fières et fiers de vous présenter l’enregistrement d’une présentation de l’histoire du SIDA au sein de la communauté haïtienne à Montréal. En 1983, les personnes d’origine haïtienne ont été associées au SIDA dans les médias et dans les politiques publiques au Québec, notamment par une déclaration de la Croix-Rouge canadienne (10 mars 1983). Cette conférence a présenté cette histoire, pour ensuite documenter la réponse de la communauté haïtienne. Les infirmières d’origine haïtienne ont été centrales à la réponse au SIDA, et ce panel a souligné leur contribution. L’activité avait deux éléments : une présentation plus formelle de cette histoire, suivi d’un échange avec trois infirmières qui ont réalisé ce travail.
Merci à Viviane Namaste, Marlène Rateau, Maud Pierre-Pierre, et Marie-Luce Ambroise pour leur participation.
The Canadian AIDS Memorial Quilt has its roots in San Francisco, where a group of people came together in 1987 to create a living memory for those who have died of AIDS-related causes. In 1989, the U.S. AIDS Memorial Quilt went on tour across the United States and Canada. Many cities in Canada hosted their own displays, where they received hundreds of new panels that were created in memory of those who lost their lives during the HIV/AIDS crisis. These panels formed the basis for what is now the Canadian AIDS Memorial Quilt, which is comprised of more than 640 panels and over 80 sections.
The Quilt Website
Anyone who tells you that AIDS activism was only a bunch of white gay men who got mad because suddenly their community experienced oppression isn’t telling the whole story. It’s understandable that people get history wrong when, as Suraj Madoori recently wrote: “Even after 35 years of HIV/AIDS, the stories of critical Black activism are notably absent in the dominant media and movement narratives.” Consider for example the narrative of the film How to Survive a Plague, which presents the history of AIDS activism in the US as mainly about the interventions made by white gay men involved in treatment activism. There are so many stories that haven’t been told, have been forgotten, or that have been only partially captured. Anti-Back racism impacts on the dominant AIDS narrative, whether it be the racist construction of “African AIDS” or the systematic forgetting and eclipsing of Black AIDS activism and organizing.
While the AIDS crisis is a condensation of many social relations including sexuality, gender, race, class and much more, often when only the ‘sexuality’ part is focused on and separated from the web of relations it is part of a white gay men’s narrative emerges. While in no way denying the devastation that the AIDS crisis inflicted on white gay men and the importance of their activism, this is only a part of the story.
Early on, societal responses to AIDS often cited the so-called “4-H” conception of who was affected (Haitians, homosexuals, hemophiliacs, and heroin users). From the beginning in Haitian communities, especially in Canadian cities like Montreal and Toronto, activists had to fight against anti-Black racism not only from the Red Cross, the government, and the medical profession, but also from many of the AIDS Service organizations. Since the emergence of the pandemic, many responses from governments on down to the individual level were racist, ableist, anti-drug-user, as well as being gay-hating. Talking with AIDS activists about the history of their work reminds us over and over again about the ways history—and how we tell it—matters. For World AIDS Day 2017, we’re taking a cue from the New York City-based organization Visual AIDS to reflect on the place of Black activists and cultural workers in the histories of AIDS activism in the Canadian context. This year’s Day With(out) Art commissioned video programming centres Black narratives within the ongoing AIDS epidemic; there are vital threads of connection between this contemporary work and the histories we are documenting in the AIDS Activist History Project.
Many of our interviewees reflected on the role race and racism played in the Canadian government’s responses to AIDS, and on the important activist work of antiracism and community organizing within racialized communities. In this short post we want to highlight just a few of the key interviews we’ve conducted thus far that speak to the vibrant work people did. This isn’t a comprehensive narrative of this critical, often ignored work, but a snapshot direct from activists who were there. So continue on for a hint of the amazing work they did organizing with the Black Outreach Project, Black Coalition for AIDS Prevention (Black CAP), and Community Organizations Mutually Battling AIDS Together (COMBAT). It is also important to note that this work organizing in Black community spaces was often in direct solidarity with other groups organized around racialized subjectivities, including Zami, Khush, Alliance of South Asian AIDS Prevention [ASAAP], Gay Asians Toronto [GAT] (later Asian Community AIDS Services), the AIDS Cultural Network. As Anthony Mohamed told us, many of these groups “are still alive today and still doing wonderful work within the various communities that they’re a part of.”
On the East Coast in Halifax, Kim Bernard was the founding organizer for the Black Outreach Project, which originated from the Halifax-based PWA Coalition. Kim told us “I believe that the Coalition saw that there was nothing being done in the Black community around HIV and AIDS education, awareness, information and that there was no support for people that have identified as being HIV-positive. I do commend them for recognizing that as a problem in our community and a gap.” Kim’s work was funded by a grant, and at the start she was the only person working on the project. She remarked, “Then they got a grant to hire somebody. It’s a typical thing, you only have one person, so when you only have one person trying to cover all of the Atlantic provinces… That can be challenging.” She went on to set up a vibrant board to support the project, to hire students to work with her (one of whom took over the project when Kim moved on), and to make meaningful connections in Black communities across the east coast. Part of that work was a multi-level “needs assessment” to figure out what the situation actually was for Black people in the Atlantic provinces in terms of HIV and AIDS; Kim and her team wrote up a comprehensive report about their findings from that work. In our discussions with her, Kim also highlighted the ways that, although the PWA Coalition recognized the need to do work in Black communities, they didn’t confront the systemic racism that structured all of the responses to HIV and AIDS. As she said, “There are probably individuals in the system that get the point but when the whole system is racist, it becomes an institutional/systemic issue. It is difficult to see change.” Kim had brought some of the material from the Black Outreach Project to our interview with her, which we were able to scan and include in the archival materials files; there is a wealth of amazing material there.
In Toronto, Douglas Stewart told us about the rich web of organizations and community formations through which his and other people’s political work around HIV and AIDS arose. He said, “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.” Doug was centrally involved with the formation of Black CAP (Black Coalition for AIDS Prevention), a community organization that was celebrating its 25th anniversary the summer we did this interview with Doug. He narrated their beginning, saying, “it was important for, again, some of the reasons I just talked about in terms of the barriers to people even being engaged in HIV and AIDS, where the conversation was situated, where it was seen as coming from, and who was part of that conversation? So, part of it was to partner with a respected Black community organization. At that time it was Hara
mbee, and it was a social service community organization. And so we were based in their offices… So, it’s now a Black community conversation.” Doug also importantly drew lines of connection between early work in these historical contexts and contemporary struggles that groups like Black Lives Matter continue to wage. He reflected on how oppression shapes the conditions of our work, saying, “part of it’s about how we have to always own and acknowledge how white supremacy and racism and heterosexism is still integral in how these systems are set up… And so even when we have these initiatives that are somehow supposed to be pushing against that, we’re always negotiating and making deals with all of that, at all kinds of levels. And so it just feels like we’re in this messy game continually.”
Dionne Falconer was involved with Black CAP in those early years. She had been part of the Toronto-based Black Women’s Collective (BWC), which did vital political work including challenging white hegemony in the BWC feminist movement and published their own newspaper. Through her involvement with BWC, Dionne joined the work that Black CAP was doing. She reflected on her experience as a young organizer doing outreach work, saying: “So, you have all of the issues interspersed, intermingled and addressing them, because that’s one of the things that HIV does is that it does bring all the issues together and you can’t always tease them out or pull them apart. You’ve got to address them all at once.” And as Dionne articulated, it was vital to have groups like Black CAP because, as she told us, “I mean there was AIDSphobia and the stigma around living with HIV, but also people didn’t want to go in a place where they didn’t see themselves reflected. And that’s also the reason for a place like Black CAP. Just like the reason for why ASAAP started—or any of the other groups was that, again, people want to see themselves reflected and feel like, ‘Oh, this is a much more welcoming environment.’ … Or, the way that they were treated when they went in, like, i.e. you’re coming in for services and no one’s paying attention to you. It’s like you’re invisible. And so, I think that those kinds of situations happened for people and thus also meant that, ‘You know what? I don’t want to go back.’ Suddenly, you’re also trying to deal with HIV, you’re hearing a lot of things … Because, remember, these are early days, so treatment is not what we see today. People are dealing with all kinds of illnesses and sometimes not fully understanding what exactly is going on in their bodies, struggling with it, not wanting to go to the doctor’s, not connected to an HIV doctor, so for all of those kinds of reasons.”
Although we haven’t talked with her directly yet (if anyone knows where she is, contact us!) Jackie Wilson was another vital force in early AIDS activism in Toronto’s Black community. She organized a group called COMBAT (Community Organizations Mutually Battling AIDS Together). Sri, a white activist who supported Jackie’s work, told us, “COMBAT was mainly focused on women and thereby had to focus on straight families. Jackie said, ‘The best access to straight families in the Caribbean communities in Toronto was through the storefront churches, so that’s where we are going to go. Every week, we are going to talk at the storefront churches. You are going to make sure the PA is working for me. You are going to make sure all the logistics are happening. You are going to hand out flyers and things.’ He continued, ‘And basically, she said if you come in, if you approach a Jamaican church as a queer organization, they’re just not going to let you though the door. The message is just never going to reach its target. And that was her position, so she said, ‘I’m going to be the straight lady working with straight people about how they get AIDS and how they are at very, very high risk, and any denialism is going to stand as a barrier to that.’ And she basically said, ‘Look. I can go places Black CAP will never get into.’”
Jackie has also shown up in our interviews as raising key questions about Black community concerns at a pivotal retreat that AIDS ACTION NOW! held at the Hart House Farm in 1989, which sparked a series of conversations about interlocking oppressions as they manifest in people’s experience of HIV and AIDS. Gary Kinsman remembered Jackie’s intervention at the Hart House retreat in his interview for the project: “And Jackie was raising important questions about racism and racialization, but also about how to do AIDS work in communities of people that were not gay-identified at least—how to do that. It was also raising questions then not only about treatment access but about all of the sorts of issues related to AIDS and HIV… So, some sort of notion of broadening this out to include especially issues and areas of concern related to people of colour and to women. I mean that was raised, I think, in some important ways at this retreat and there was some major resistance to that.” At many points in our interviews we heard people reflect on how AIDS organizing pulled them to reflect on the complexity of people’s entangled political identities – that while many of them may have started from one subject position, much of the work really required having a complex, intersectional approach. Activist Renee du Plessis told us, speaking about her inspiration to take leadership from the people most affected by systemic oppression in responding to HIV and AIDS, “I think I would say the challenges were that the group that was the most affected was not exclusively well educated, with a multitude of resources. Gay men also included poor men and First Nations men and immigrant men, you know. And then it started also getting to be where I became more and more aware of criticism that lesbians were holding, and that women in general were holding, both to the organization and what they were doing and their presumptions on who was actually the most affected.”
As we move toward the end of funding for this oral history project, we are continuing to document and remember AIDS activism with a commitment to challenging anti-Black racism and to centering those most affected by the ongoing crisis. As Doug said towards the end of our conversation with him, “You know, as James Baldwin would say, you can’t change anything unless you face it.” On this World AIDS Day, we reflect on what it means to face the ways that racism has shaped and continues to shape people’s experience of HIV and AIDS.
Here at the AIDS activist history project we were glad to have some in-person time this week with project lead Gary Kinsman, who was here in Ottawa as part of the We Demand An Apology Network to receive the Prime Minister’s statement acknowledging some Canada’s egregious treatment of LGBT people who worked in the public service and for the military. We were also happy to be able to interview another member of the network, who was involved in AIDS activism as part of ACT UP Halifax (that interview will be posted as soon as it’s transcribed and checked).
Talking through the apology made us think about the ways that anti-AIDS practices have been entwined with the purges people experienced (and about the ways that criminalized, undocumented, and non-citizen queer, gay, lesbian, Two-spirit, and trans people are still targeted by harmful government practices in ways not acknowledged by this week’s apology). One of our interviewees was also in town as part of the Network to witness the apology, and we wanted to highlight some of his story and invite you to read more about his remarkable work. Simon Thwaites was a master seaman in the Navy, holding a security clearance for his work. He was diagnosed as HIV positive after he participated in one of regular blood drives on board ship.
And then the weirdness started happening, because the base hospital, for whatever reason, passed the information on to the military police. So, then I was investigated by the military police. First, when they dragged me down to their building that they had downtown, the first words that they asked were, “Are you gay?” And I kind of looked at them and I thought, “Who cares?” Like, I got HIV. I’m going to die in, well, two-and-a-half years now. So, I just said, “Yeah,” I was like, “So?” And they said, “Well, you know, you could be coerced, manipulated or, you know, to reveal secrets and that,” because my trade was secret. And I’m like, “Well, how are they going to do that? You already know. [laughter] I mean, I’m telling you.” It didn’t make sense to me. I didn’t really care because, as far as I was concerned, I was being written off anyway. And so, I was still figuring out if I was going to be alive tomorrow, let alone them worrying about if I was gay or not. That was the last thing on my list of things. So, they said, “Fine.” Anyway, I went back to work. Next thing I know, then I get dragged out of where I was working and started to sweep floors. So, I ended up sweeping floors in the Drill Shed in CFB (Canadian Forces Base) Stadacona, which actually is a punishment. People who do things wrong and get a lot of demerits kind of thing, they end up sweeping floors or they end up cleaning dishes or doing what we call kitchen duties. And that was the other job I did, kitchen duties. So, then my friends are like, “Well, why are you doing that?” because I was senior to a lot of my friends rank-wise.
Simon was demoted and spent the next years doing menial labor. As he told us:
The laugh about it is that on my files with the military, I actually have accelerated recommendations for promotions. I have letters of reference. Whatever job I had done, I had done well. That’s just my work ethic. Just like, get on with it. I don’t BS. I don’t mess around. Do you want me to sweep the floor? Well, fine. I’ll sweep the floor and I’ll do it well. If you want me to clean the pots and pans, I’ll clean them up; I’ll reorganize the whole kitchen. I just go crazy. Especially if I’m trying to work because, obviously, I’m trying to deal with the other issue, so I countered it with work hard and that way your brain doesn’t think so much. The irony was while I was in these odd jobs, I had ships actually applying to have me posted to them to be on them because I was required or needed by them to fill a position because of my rank and the fact that I normally was a supervisor. So, it kind of undermined their argument when the actual lawsuit happened that my services were no longer required. Okay, I have three ships asking for my services.
Having denied Simon his skilled work, the Navy then denied him a medical pension, terminating him in 1989. He remembered, “If they had left me for three more months in the military, I would’ve had a medical pension, but by kicking me out three months previously, I lost that because you had to have ten years. And that would’ve been my ten-year, my magical mini-medical pension they call it, so the ten-year mark. Unfortunately, they let me go.”
Simon was an active and important part of AIDS organizing in the Nova Scotia context, directly supporting many other people living with HIV and AIDS and participating in organizing spaces. The decision about his legal case for wrongful termination is a vital piece of the history of workplace disability law. We are proud to have Simon’s interview included in our oral history work and encourage you to check it out.
ALTERNATE ENDINGS, RADICAL BEGINNINGS
December 1, 2017, 7:00 pm (doors open at 6:30)
McNabb Recreation Centre, 180 Percy Street, Community Room
(Toronto [Ryerson], Montreal [McGill], and Calgary [ACAD] event info coming soon!)
Please join the AIDS Activist History Project for a video screening of ALTERNATE ENDINGS, RADICAL BEGINNINGS, the 28th annual iteration of Visual AIDS’ longstanding Day With(out) Art project. Curated by Erin Christovale and Vivian Crockett for Visual AIDS, the video program prioritizes Black narratives within the ongoing AIDS epidemic, commissioning seven new and innovative short videos from artists Mykki Blanco, Cheryl Dunye & Ellen Spiro, Reina Gossett, Thomas Allen Harris, Kia Labeija, Tiona Nekkia McClodden and Brontez Purnell.
In spite of the impact of HIV/AIDS within African, Craibbean, and Black communities, these stories and experiences are constantly excluded from larger artistic and historical narratives. In 2016 African Americans represented 44% of all new HIV diagnoses in the United States. As of 2014, African, Caribbean, and Black communities represented an estimated 16% of people living with HIV in Canada, while representing only 2.5% of the population. Given this context, it is increasingly urgent to feature a myriad of stories that consider and represent the lives of those housed within these statistic. ALTERNATE ENDINGS, RADICAL BEGINNINGS seeks to highlight the voices of those that are marginalized within broader African, Caribbean, and Black communities, including queer and trans people.
6 designated accessible parking spaces
Accessible path of travel from the parking lot to entrance
20 metres from parking space to the door
Wide door for wheelchair passage
Automatic door opener
Direct access to the main floor, lobby, elevator
Automatic door access to interior areas
All public spaces on accessible path of travel
Ramps or elevators to all levels
Accessible seating available
-Bus tickets will be available for transportation.
-ASL translation and French whisper translation is available. Please email us (aidsactivisthistory<at>gmail.com) if you would like translation by November 17th.
-We request all participants refrain from wearing scents to better allow people with chemical sensitivities to attend.
-If you have any other accessibility questions not answered here, please get in touch.
Kids are welcome to attend; there will not be separate childminding, however.
A short interview with Alexis and Gary along with video footage from the hour-long AAHP presentation at Concordia University’s Community Lecture Series on HIV/AIDS a year ago is now available online. Definitely worth checking out if you are interested in learning more about the Montreal collection of oral history interviews we’ve been conducting and the forgotten history of HIV/AIDS activism in Montreal.
During the summer of 2017 AAHP also hosted a workshop during the annual Pervers/Cité festival in collaboration with the Archives Gaies du Quebec to teach people about our work and the history of HIV/AIDS activism in Montreal in particular. We focused on showing participants how we use Omeka to organize our digital ephemera as well as the ongoing indexing process we are doing with our oral history transcripts in order to make them more accessible for future research(ers). Hopefully we will be hosting more workshops like this in the near future in other locations as well!