American activist, artist, and performer Blane Charles came to Montreal as part of the ACT UP/New York contingent at the V International AIDS Conference taking place at the Palais des Congrès during the summer of 1989. By 1990 Charles was living full-time in Montreal and was a founding member of ACT UP/Montreal. Charles was recently interviewed by Never Apart, a queer Montreal cultural centre, and Charles was also interviewed by the ACT UP Oral History project back in 2014. Both interviews supplement the many Montreal interviews in our own oral history project and provide a unique insight into political context and social milieu of Montreal HIV/AIDS activism in the late 1980s and early 1990s.
While living though the current Coronavirus/COVID-19 crisis I am struck by the connections between the AIDS crisis (which is also not over) and this health crisis. These connections are not often being made or remembered in the commentaries and analysis I have seen. At the same time there are also major differences between these two different health crises including mode of transmission, impact on people’s bodies and health and to some extent who is most affected. I was actively involved in AIDS organizing and activism in the 1980s and 1990s and have also been involved in documenting some of these histories. In this initial sketch I try to draw out some of what can be learned from the history of AIDS organizing and activism for the current pandemic. I know this is partial and limited but I feel an urgency to get it out there. Please feel free to add to it or critique it. It is intended to get discussion going.
Referring to AIDS organizing and activism I refer firstly (but not only) to the treatment based (but always much broader) direct action informed activism associated with various AIDS Coalition to Unleash Power (ACT UP) groups that existed across the USA, in ‘Canada,’ and around the globe (some of which still exist) or groups like AIDS ACTION NOW! (AAN!) based in Toronto. These groups with the themes of “Silence=Death, Action=Life” focused on fighting to get access for people living with AIDS/HIV to treatments to fight the infections that were actually killing people. They put the needs of people most affected by AIDS at the centre of the social response. I am also referring to the first wave of the setting up of community based groups in the early 1980s (and later) that supported people living with AIDS/HIV, developed education and fought against discrimination when governments were leaving people to die. It was these community initiatives growing out of gay and lesbian, and to some extent the feminist and progressive health movements, that provided support for people affected by AIDS in the face of state inaction and indifference from the elites of the medical profession. These forms of activism extended and saved people’s lives.
Like all health emergencies the AIDS crisis was/is a condensation of many social relations – including sexuality, race, gender, class, poverty, underdevelopment, colonialism and neocolonialism, ability, drug use, sex work, the power of pharmaceutical corporations, the character of the medical profession, problems with public health and so much more. It is always important to ask which ‘public’ is being defended and whose ‘health’ is being protected? For the AIDS crisis to be fully addressed all of these relations had to be engaged with.
The current pandemic includes all of this and more but in a context where neoliberal capitalist relations have gone much further in their destruction of health care, social assistance and the social wage, and the generation of precarious wage labour in many countries. The power of multinational pharmaceutical corporations over our lives has intensified.
More specifically, there are a number of connections needing to be made:
‘Expendable populations’ and fighting discrimination and stigmatization.
In the early years of the AIDS crisis there was little official and state response since it was seen as only affecting ‘expendable populations’ — gay men/men who have sex with men, drug users, Haitians and other people of colour (including the racist construction of ‘African AIDS’) and sex workers. These were the groups identified as the “high risk groups” and this term was lifted out of epidemiological discourse to organize social discrimination and stigmatization against these groups. These people were thought by moral conservative (and often neoliberal) governments as ‘expendable’ and therefore years of social and health care response were lost in the fight against AIDS. Instead the ‘general population’ (coded as white, middle class and heterosexual) was defended against the ‘vectors’ and ‘reservoirs’ of infection. Early AIDS organizing fought against this by refocusing on the risk activities that anyone could engage in and by affirming the importance of the lives and needs of people living with AIDS/HIV and the communities most affected by AIDS. AIDS activism fought against discrimination and racist responses to AIDS. It also took up the concerns of those who were being ignored in the social response to AIDS, including the needs of women and people of colour. AIDS activists argued for the needs of those most directly affected to be at the centre of the social response and not only the needs of the non-infected.
In the current pandemic there has been the social organization of discrimination, racism, and stigmatization against people from China, Korea and other Asian countries, including continuing references by Trump and others to the ‘Chinese’ virus (or for some the ‘Asian’ virus). In a slightly more localized fashion this has also been mobilized against people from Iran — in the middle eastern context in particular. This early focus on the pandemic as only affecting ‘other’ people (and only viewing these ‘other’ people as the ‘threat’) led to weeks of delay in developing a response in many state and official circles.
But there are also ways in which those most vulnerable to the coronavirus — older people and those living with compromised or weakened immune systems – including people with cancer, HIV infection, diabetes, heart conditions, and forms of disability — are seen as also being ‘expendable.’ This was especially clear in the first responses of Boris Johnson and the UK government with their mobilization of ‘herd immunity,’ or, what some people conjuring up pseudo-eugenic aspirations referred to as the ‘culling’ of the population. The elderly were viewed as ‘non-productive’ (in relation to capitalist production), or by some as a ‘drain’ on social resources — in contrast to Indigenous traditions where elders are seen as having wisdom and are treated with great respect– and those with immune-compromised bodies, including those with cancer and HIV, often those living with disabilities were also viewed by these people as ‘expendable.’
With the articulation of ‘washing your hands” as part of the preventative measures this means that all those who cannot access clean water (like many on First Nation reserves in ‘Canada’) also become ‘expendable.’ With the official advice of ‘social distance’ and ‘social isolation’ as the way to prevent transmission this also makes all those who do not have the material basis to do this becoming ‘expendable.’ It is now clear to me that the term ‘social distancing’ participates in dissolving the social and since we need to maintain and build the social in the context of this pandemic we need to use terms like spatial or physical distancing instead. Those who cannot participate in these distancing and isolation practices include the poor and homeless (who are often racialized), and those in institutions (including nursing homes) and prisons, as well as those who cannot miss waged work when they are sick given the massive growth of precarious labour and the lack of paid sick days and social support given the ripping apart of the social wage by neoliberal capital. The class and racialized dimensions of this become very clear. Finally the closing of borders serves to place the lives of refugees, migrants and those without status in very difficult situations. These are mostly people of colour.
All these approaches prioritize the lives of those least at ‘risk’ of death from the coronavirus — the younger, the ‘healthy,’ the non-disabled, those with healthy immune systems, and the wealthy over everyone else. It is their health that was being protected. They became the ‘public’ to be defended from those who could potentially die from COVID-19. Calls for attention to the specific needs of Indigenous nations and communities, homeless people in the shelter systems, the need for all workers to have paid sick leave and relief from evictions and mortgages and to be able to refuse unsafe work, the need for adequate social supports. and for the needs of refugees and migrant workers to be addressed are ways to actively cut across this. This must be taken up as central to social responses to the pandemic.
Social solidarity/responsibility – from safe practices to ‘spatial or physical distancing.’
When people including Michael Callen (an early AIDS activist living with AIDS) began to figure out that whatever was causing AIDS (this was before HIV was identified) was transmitted through specific sexual acts and blood to blood contact this led to the development of safe sex and later safe practice guidelines for injection drug use and other practices that meant there was no transfer of bodily fluids or blood to blood contact. These practices were effective in lowering HIV transmission. This was not an individualist response but was instead based on a sense of group social and collective responsibility and meant that people with support were able to alter their social practices for the benefit of their communities. It was not easy for people to alter their practices so this was based on a great deal of popular education and community support. Much of this was based on the assumption that everyone was infected so it broke down the barriers between those infected and those not. Regarding drug use it became central to harm reduction practices. It became part of a community ethics. In relation to safe sex it was also based on the eroticization of safe sex and practising safe sex as fun. This is how safe sex campaigns worked. Safe sex was the erotic and social way to do it for everyone.
In the current pandemic this takes a different form but also one that has to be social and collective in character if it is to work. Spatial or physical distancing – combined with hand washing, use of gloves and coughing/sneezing into one’s sleeve etc — is now what is socially necessary and responsible to lower the infection and death rates. This is also based on the need for all of us to continue engaging in the vital work of social reproduction (including increasing caring labour) even in more distanced and isolated ways. It is this labour of everyday/everynight social reproduction — much of which is not waged and often associated with women (both cis and trans) in the prevailing gender division of labour — that creates the very possibilities for our survival. We need to change our social practices and this requires social support and solidarity, especially to protect those most at risk of death from COVID-19. This means opposing the selfish individualism often displayed in response to a health crisis bred in capitalist societies.
Like with safe practices this collective response requires popular education and social support. While governments and officials can encourage this much of the impetus for this must come from below and we need to provide mass support for doing this. There are some inspirations for this in the early support groups for people living with AIDS/HIV, the buddy systems, and more in early grass roots responses to the AIDS crisis. Networks of mutual aid and social solidarity to support people are being formed in many locations (there is a list of some resources below) in the current pandemic and these need to be facilitated and given resources. Without violating spatial or physical distancing we need to provide support and solidarity for people. For those who have to engage in isolation practices we also need to provide as much support and care as we can. These initiatives will be crucial in determining whether we can slow the infection and death rate. The next few months will be crucial on a global scale.
Health care for all! – health from above to from below.
Central to AIDS activism was health care for all. In the USA ACT UP groups engaged in important campaigns for universal access to health-care. In the ‘Canadian’ context and other countries with more of a ‘welfare state’ there was more access to health care but still major problems (no Pharmacare, very expensive treatments, no coverage for dental care etc). Since the 1980s and 1990s things have largely got worse with major attacks by neoliberal capital and state agencies on access to and the quality of health care and a growing privatizing of health care. Existing health infrastructures have been weakened and torn apart. As Mike Davis points out in the context of the current pandemic:
“capitalist globalization now appears to be biologically unsustainable in the absence of a truly international public health infrastructure. But such an infrastructure will never exist until peoples’ movements break the power of Big Pharma and for-profit health care.”
Here Davis raises major concerns about the need for our survival to shift the character of health care away from capitalist profit rates and the domination of big Pharma. If we are going to be successful in addressing this pandemic it requires major transformations in health care and social policy. This needs to be based on universal free access to quality health care, and free access to testing, treatments and vaccines when they become available — and the spending of major social resources on developing treatments and vaccines. Informed by feminist health organizing and AIDS activism this also needs to be a health from below where people get to take more control over their bodies and health in a rupture with capitalist health care and the power of the pharmaceutical corporations. This requires a major shift from health from above to a health from below. Michel Foucault, a French theorist, wrote about the development of ‘biopolitics’ where forms of social power mobilized bodies and the population as a resource for ruling forms of power starting in the 19th century. ACT UP type politics began to articulate what can be called a ‘biopolitics’ from below which is what we will need to address and build on in ending this pandemic.
Transferring Resources to the ‘Global South’
In the AIDS crisis AIDS activists called in the Montreal Manifesto (issued by ACT UP NYC and AIDS ACTION NOW! at the World AIDS conference in Montreal in 1989) for a major transfer of wealth and resources to people in the global south if the ravages of AIDS were going to be successfully fought. This was based on an understanding of how the underdevelopment of much of the global south was based on the transfer of wealth and resources through colonialism and imperialism to ‘overdevelopment’ in the global north. If people were going to be successful in combating AIDS they needed more wealth and resources and these needed to come from the more wealthy countries in the ‘global north.’ While these campaigns had only a limited impact they pointed in a very important direction.
In the current pandemic the situation is a bit different and even though China faced the first attacks of this virus they and Cuba are now the only countries in the world who seem to have the skills and resources to help people in Iran, Italy, Iraq, Venezuela, Nicaragua and other countries. We can actually see how neoliberal capitalism and its tearing apart of social programs and the social relations of health have weakened the ability of countries like the USA and many countries in Europe to be able to respond to this pandemic. At the same time forms of colonialism and neocolonialism and imperialism still cause major forms of ‘underdevelopment’ in major parts of the ‘global south’ and the transfer of resources, wealth and expertise there are urgently needed.
An important part of this now is also to end the sanctions against Iran and Venezuela that are making it far more difficult for these societies to respond to this pandemic. The sanctions against Cuba actually make it more difficult for other countries to be able to use the medical experience that Cuba has gained. These sanctions must be ended. The Israeli state in its restriction of what can enter Gaza and the occupied territories is also making it more difficult for Palestinians to survive this pandemic. The Israeli state must let aid and assistance in and not leave Palestinians to die.
Problems with distancing and isolation.
There are problems with the solutions proposed to stop the spread of the coronavirus. While absolutely necessary ‘social distancing’ (what needs to be called spatial or physical distancing) and ‘social isolation’ (what needs to be called spatial or physical isolation) can be taken up in a very individualist way. Those with lots of material resources are able to accomplish this far easier than others and there are major racialized class implications. These measures also can facilitate isolation and depression and exacerbate mental health problems in people who need everyday social contact. ‘Social isolation’ with abusive partners can intensify problems of domestic abuse and violence against women and we must develop ways to respond to this. We need to also see that there is a lot of work/activity involved in ‘distancing’ and ‘isolation’ and this needs to be recognized and supported. We need to provide as much social support and solidarity for this ‘distancing’ and make it clear this is a needed and necessary social and collective response. In this sense we need to see it as the opposite of an individualist response but view it as our social and community responsibility. We need to consistently check in on people via telephone, email, facetime and other social media. We need to make sure people are able to get their groceries and whatever else they need. We need social solidarity and mutual aid and need to facilitate networks that can accomplish this. The scenes from Italy, Lebanon and other places of people singing to, and with, each other from their balconies are an inspiring example of what is very possible and badly needed. We need to constantly remind ourselves that we all engaged in collective practices of survival and find joy, play and pleasure wherever and whenever we can in doing this.
Opposing the dissolving of our social struggles and movements and resisting the social organization of forgetting – Returning to the streets when we can.
From above they are using ‘social distancing’ and the ban on public gatherings in the streets to attempt to dissolve our public struggles and movements. In the AIDS crisis we resisted their attempts to have us so overwhelmed with grief that we could not continue our collective struggles. We resisted this through the political mobilization of anger, rage and grief including with the development of ‘political funerals.’ But in the AIDS crisis we were still able to express publicly our social and collective response and our power from below in direct actions. In this pandemic we can no longer do this.
Those in power are attempting to use this pandemic to dissolve our social struggles and to further there class and racial interests. The wave of declaration of states of emergency, while necessary in very important ways, can also give state agencies powers they can use against us collectively and individually. We need to remember how quarantine legislation was used against the communities of people most affected by the AIDS crisis in the 1980s and 1990s.
This demobilization of struggle is very clear regarding the Wet’suwet’en struggle for sovereignty and against pipelines and ‘man camps,’ in the major teachers struggles in Ontario, and perhaps most clearly in the halting of mobilization against the neoliberal pension reform and in the continuing Yellow Vest struggles in France. We need to keep these struggles going, even if using new tactics. For instance, this year’s Israeli Apartheid Week (a pro-Palestinian global week of education and action) has had to cancel and postpone many events and this week is being kept alive via social media. The Wet’suwet’en struggle continues via telephone and social media and popular education in a more dispersed fashion.
We need these struggles to be kept alive in the various ways that we can, and also use this pandemic period to do as much popular education on these and other struggles as we can. This means using social media as a terrain of struggle, while at the same time recognizing its limitations including that not everyone has access to it — and how measures like the closing of libraries will further limit access to it. We need to use the internet and social media as much as possible as a terrain for remembering and for critical social analysis. We must not allow them to make us forget about the struggles we were engaged in before this pandemic hit nor what we will learn from surviving it about the need to get rid of neoliberal capitalism and for radical social transformation. When the situation again allows for it we must return to the streets and large public assemblies to continue, intensify and to link together our struggles for justice and dignity with the added wisdom of what we will have learned from surviving this crisis.
Gary Kinsman was one of the first three employees of the AIDS Committee of Toronto, a member of AIDS ACTION NOW!, the Newfoundland AIDS Association, the Valley AIDS Concern Group in Nova Scotia, and now the AIDS Activist History Project (https://aidsactivisthistory.ca/). He is also the author of The Regulation of Desire, and co-author of The Canadian War on Queers. His website is: https://radicalnoise.ca/
Nick Dyer-Witheford, Cyber-Marx: Cycles and Circuits of Struggle in High-Technology Capitalism, Champaign, Illinois: University of Illinois Press, 1999.
Michel Foucault, History of Sexuality: Volume One, An Introduction, New York: Vintage, 1980.
Gary Kinsman, The Regulation of Desire: Homo and Hetero Sexualities, Montreal: Black Rose, 1996.
Gary Kinsman, “Managing AIDS Organizing: ‘Consultation,’ ‘Partnership,’ and Responsibility’ As Strategies of Regulation,” in the second edition of William Carrol, ed., Organizing Dissent: Contemporary Social Movements in Theory and Practice, (Toronto: Garamond, 1997), pp. 213-239.
Gary Kinsman, “AIDS Activism: Remembering Resistance versus Socially Organized Forgetting,” in Suzanne Hindmarch, Michael Orsini, and Marilou Gagnon, eds., Seeing Red, HIV/AIDS and Public Policy in Canada, Toronto: University of Toronto Press, 2018, pp. 311-333.
Gary Kinsman and Patrizia Gentile, The Canadian War on Queers, National Security as Sexual Regulation, Vancouver: University of British Columbia Press, 2010.
Eric Mykhalovskiy, and George W. Smith, Hooking up to social services: A report on the barriers people living with HIV/AIDS face assessing social services. Toronto, ON: Community AIDS Treatment Information Exchange, 1994. .
Jamie Lee Hamilton (1955 – 2019) was a trans, Two-Spirit, Indigenous woman, and organizer who fiercely advocated against the past and ongoing criminalization of sex work in Canada. Her work propelled people to notice and think critically about anti-sex work sentiment, and liberal discourses that frame sex workers as victims in need of rescue, rather than as empowered organizers who worked together across multiple issues to resist the erasure of vital histories of sex work in Canada, as well as the violence that such erasure makes possible. Drawing on sex worker activism throughout the 70s-80s—what Hamilton referred to as the “golden age of sex work in Vancouver”—Hamilton’s interview with the AAHP documents powerful histories of organizing across multiple issues, and underscores the importance of resisting isolation and erasure through collective action and intergenerational remembrance practices (T48/3).
Hamilton’s activism demonstrated the radical potential of organizing across multiple issues for change-making. Her interview documents many moments in which sex workers in Vancouver came together and worked collectively to resist their attempted erasure by civil society organizations such as Concerned Residents of the West End, and by various levels of government through legislation such as the city’s Street Activities By-Law, and the province’s 1984 injunction against sex workers. Amidst this context of anti-sex
work sentiment, and the violence it made possible, Hamilton highlighted the formation of sex worker-led organizations that were directed towards their empowerment and safety, such as the Alliance for the Safety of Prostitutes, the Women’s Information Safe House, and Prostitutes and Other Women for Equal Rights. Amongst many other initiatives, Hamilton helped create various harm reduction strategies for sex workers, such as creating some of the first “bad date sheets”, through which sex workers protected each other by documenting the license plates, vehicle descriptions, and physical descriptions of dangerous clients (T48/7). She also organized a “shoe dump” action at City Hall. Recognizing that many of the sex workers missing were Indigenous, Hamilton reached out to the United Native Nations to join in the dumping of 67 pairs of shoes at City Hall—one pair for each of 67 sex workers noted to be missing at the time (T48/12). In doing so, Hamilton demonstrated that the protection of sex workers required an ongoing commitment to the dismantling of settler colonialism.
Hamilton’s fierce advocacy for organizing across multiple issues shone through in her involvement with AIDS organizing. In response to British Columbia’s 1980s quarantine legislation, sex workers and drag queens came together with lesbians, bisexuals, gay men and others to fight it by forming the Coalition for Responsible Health Legislation, visiting the city’s fourteen gay bars on weekends to do awareness campaigns, mobilize, and to fundraise. Observing that, initially, it was predominantly gay men who were getting sick, Hamilton remembered thinking that “This isn’t right that they can be locked up and quarantined”, and noted that upon remembering sex worker’s “own battle,” having felt “this amazing connection of solidarity” (T48/8). Hamilton recalled thinking, “Like, we’re not going to allow our brothers, and then later women as well, to be treated in this manner. Because we remembered how we were treated, as well” (T48/8).
As a community mobilizer and organizer, Hamilton remained cognizant of the violent impacts of isolation on those for whom mainstream community organizing was inaccessible and unaccountable. In particular, Hamilton’s interview problematized the isolation of trans AIDS patients in Normandy Hospital, away from the broader LGBTQ community, which she observed was a key factor in their mistreatment. Hamilton recalled that
“Then at one point our trans community were – and I don’t know why this happened – they were being placed at, you know if they had AIDS, they were being placed at this private hospital way out in the West side on Arbutus Street called the Normandy Hospital. And it was awful … you know, I’d visit a friend or two in there, and it was just very alien for them, you know.” (T48/9)
She explained further that,
“Still to this day I don’t understand why. I realize there wasn’t much, but we could have worked together, put our heads together. And why Normandy Private Hospital was chosen as a rest home? It didn’t make sense. It was way out of the downtown core where our community is.” (T48/9)
In response to the isolation of members of the trans community, and the mistreatment and violence they were consequently subjected to away from the public eye, Hamilton began raising “awareness around trans issues and AIDS…,” simultaneously educating trans people on the use of condoms, while fighting their isolation by ensuring their inclusion in broader 2SLGBTQ AIDS organizing (T48/9). Her interview reflected her ongoing commitment to fighting isolation, ensuring that those sent to Normandy Hospital were included in the process of documenting AIDS activist histories.
Hamilton’s work against the isolation of trans AIDS patients was part of her broader commitment to resisting erasure, systemically as well as at the level of the everyday. She emphasized the importance of intergenerational dialogue and coalitions, underscoring the need for subsequent generations of activists to learn from and build on the work and strengths of their predecessors, stating that “I think you need to respect the elders, and learn from the elders” (T48/18). Hamilton’s resistance to erasure was driven by her deep commitment to maintaining active communities that are ready and mobilized to respond to new and ongoing attempts at all levels of systemic erasure, explaining that “at any time things can change, policies can change. We could have another quarantine legislation. We could be threatened with it. You just never know who the lawmakers are going to be… [sigh]” (T48/18). The urgent task for future generations is to learn from our predecessors—not solely to acquire the skills and tools needed to do anti-oppressive work, but also to learn to think collectively across multiple issues and generations in doing so.
Jamie Lee Hamilton was a vital force in building the sense of collectivity needed to resist so many attempts at the erasure of sex workers, Indigenous peoples, trans people, and broader 2SLGBTQ communities. Towards the end of her interview, Hamilton expressed that “We’ve lost so much of all that history. In a way, I’m happy that I got to be around it in the heyday. I just don’t want to see complete erasure” (T48/19). It is not possible to fully commemorate Hamilton in writing alone. What is possible, however, is her commemoration through action—that is, by learning from the wealth of knowledge she generously gave in words and in action, and using it to build and nurture the “connections of solidarity” that drive and sustain us (T48/8). Rest in power, Jamie Lee Hamilton.
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
Today, the Canadian AIDS Memorial Quilt is under the care of the Canadian AIDS Society. Their newly redesigned website features a virtual viewing experience, where visitors can search through and explore individual panels and sections. A living memorial of those whose lives have been lost, the Quilt is an important part of the rich history of HIV/AIDS-related activism and resistance in the Canadian context.
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.
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.
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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!