How connected are young activists to the history and current landscape of HIV/AIDS research and lived experiences? How can faculty bridge the knowledge gap? As a doctoral student, Jade Crimson Rose Da Costa received the 2021-2022 OCUFA Henry Mandelbaum Graduate Fellowship for Excellence in Social Sciences, Humanities, or Arts.
What’s your first memory of HIV/AIDS?
I asked this question while conducting in-depth interviews for my dissertation research, From Racial Hauntings to Wonderous Echoes: Towards a Collective Memory of HIV/AIDS Resistance. The main goal of my dissertation was to help combat the historical erasure, or whitewashing, of Queer and Trans, Black, Indigenous, and People of Colour (QTBIPOC) activists from mainstream remembrances of HIV/AIDS resistance within and around the city colonially known as Toronto (Tkaronto). I formulated this goal with the desire to help their present-day counterparts better connect with the city’s rich and ongoing history of intersectional HIV/AIDS activism. My project builds on a long tradition of QTBIPOC activist-scholarship within and beyond the city.
For my research, I interviewed 60 racialized and Indigenous folx aged 18–35 about what they felt they knew about local histories of HIV/AIDS resistance. By “local” I meant those within the densely populated region colonially known as Central Southern Ontario, and the adjoining subregions therein: the Greater Toronto-Hamilton Area and Tri-Cities-Guelph. Research participants identified as either activists, advocates, or organizers, and were all engaged in at least one of the following forms of gender and sexuality resistance: feminist, HIV/AIDS, queer, sex worker, and trans.
The opening question
To ease into our discussions about HIV/AIDS politics, I asked participants the opening question: What’s your first memory of HIV/AIDS? To my surprise, nearly every participant responded with a negative story about their sexual education from prekindergarten (PK) to Grade 12. Across these stories, HIV (which was almost always conflated with AIDS) was consistently framed as the ultimate consequence of engaging in sex and other “deviant” or “risky” behaviours, such as drug use. Folx were also told, to quote one participant, Aida (she/her), “that AIDS is something that happens in Africa, for some reason,” in which “Africa” was conceptualized based of the west’s anti-Black and colonial fictionalization of the continent as poor, premodern, and homogenous.
What’s your first memory of HIV/AIDS?
These two lessons combined led most participants in my study to believe, in the earlier years of their life, that they would never, nor could ever, contract HIV. HIV/AIDS was, for them, something that happened to those people, out there, who either did extremely dangerous things that they would never do, or who lived in unknown and unimaginable worlds.
Almost all participants felt that the misconceptions of their youth had carried into their adulthood more-or-less unchallenged. In the case of those living with HIV (N=27), this held true up until the moment of their diagnosis (and sometimes, afterwards). For those not living with HIV (N=33), their youthful misconceptions about the disease never really went away–even when their intellectual knowledge of HIV/AIDS had grown and evolved.
Evaluating HIV/AIDS education
These findings did not entirely surprise me. I am a gender nonbinary queer woman of colour community organizer within Central Southern Ontario who, like my participants, is between the ages of 18–35. At the onset of my dissertation research, I had begun to suspect that my peers (i.e., other younger racialized and Indigenous folx engaged in gender and sexuality resistance) had little to no knowledge of the histories of HIV/AIDS activism that precede us. My hunch got stronger in the wake of the COVID-19 pandemic when QTBIPOC were leading community responses to the global crisis across Central Southern Ontario, yet appeared to draw few, if any, connections between this work and the work that our elders did in response to the AIDS pandemic–something seasoned AIDS activists encouraged us to do.
I couldn’t blame my peers for this. I had been entirely ignorant of the ongoing significance of HIV/AIDS resistance until my chance introduction to the topic in 2016 when, in the first year of my PhD program, I took a graduate course in the sociology of health. The instructor, a seasoned AIDS activist, introduced me to the AIDS Activist History Project.
I learned early on in my program that Toronto-based responses to HIV/AIDS have played a fundamental role in shaping not only local sites of contemporary HIV activism, but all present-day gender and sexuality resistance efforts within and around the city. I also learned through my scholarly work writ large that QTBIPOC are generally whitewashed out of (erased or forgotten from) Canadian histories of gender and sexuality movements. Thus emerged the catalyst for my dissertation research: I wanted to explore whether my hunch was correct and if younger generations of non-white gender and sexuality organizers, advocates, and activists did, in fact, lack a strong historical knowledge or collective memory of local sites of QTBIPOC-led HIV/AIDS resistance. I also wanted to explore what could be done to rectify the situation and to move towards a collective memory in which QTBIPOC activists are no longer forgotten.
I also wanted to explore what could be done to rectify the situation and to move towards a collective memory in which QTBIPOC activists are no longer forgotten.
As it turns out, my hunch was correct. Of the 60 people who I interviewed, many of whom were living with HIV, only three had a strong connection to and solid sensed knowledge of HIV/AIDS resistance—locally or globally, historically or presently. I was therefore not entirely shocked that participants in my study also continued to struggle with outdated stereotypes and misconceptions about HIV/AIDS. If we know little to nothing about the histories of HIV/AIDS resistance that ultimately shape our present-day work, then it stands to reason that we would feel disconnected from HIV/AIDS as an ongoing site of struggle. Similarly, if we are taught from a young age that HIV/AIDS is a personal risk, versus a social issue, then we are less likely to develop a collective memory of the resistances that preceded it.
The effects of disconnection
What did surprise me, however, was the extent to which this sense of disconnect has impacted younger activist generations. It wasn’t just that participants tended to know little to nothing about HIV/AIDS resistance, but that the lessons that they—that we—were taught during PK-12 education have remained strong enough within our minds that, even as adults fighting for gender and sexual liberation, we continue to wrestle with the AIDS-phobic myths taught to us in our youth.
There are many things that trouble me about this finding. As a longtime postsecondary educator and a recently graduated postsecondary student, it is clear that there has been a failure of postsecondary education to effectively teach about the sociopolitical realities of HIV/AIDS, past and present. Every participant in my study either had or was pursuing some type of postsecondary degree, many of which were in the liberal arts or helping professions. Yet very few of them were taught about HIV/AIDS resistances, or struggles, within their courses. Most odd about this is that many participants had extensive training in knowledge sites that overlap with HIV/AIDS struggles and resistances, such as feminism, disability studies, queer and trans issues, anti-racism and decolonialization, social work, and even sex work and harm reduction. This oversight also extended to participants’ activist and community networks. As phrased by one participant, Jamie (he/him), “We care so deeply about intersectionality and getting everyone included, but when you think of that list of identities, HIV/AIDS is not included.” I even talked to a few social workers who discussed the consistent failure of their programs to teach HIV/AIDS as an ongoing and intersectional social issue.
Those who did encounter HIV/AIDS education within postsecondary found it, at best, lackluster. Many felt that HIV/AIDS, if taught at all, was generally explored as a sidenote within university or college classes, regularly reduced to one fleeting section of a course. In rare instances in which participants were able to take a partial or full course on HIV/AIDS, it was either taught through:
- a historical lens that positioned HIV/AIDS as an outdated “gay plague” that only really impacted white gay cisgender men in the 1980s, thus obscuring its longstanding impacts on non-white communities;
- a biomedical lens that posed HIV/AIDS as a treatable illness that, through biomedical interventions, has essentially been cured, thus obscuring the significant economic, colonial, racial, cultural, and geographic barriers to treatment; or
- a Global Development lens that framed HIV/AIDS as a faraway “African Disease.”
Those who did encounter HIV/AIDS education within postsecondary found it, at best, lackluster.
All three of these frames made participants feel even more disconnected from HIV/AIDS.
Developing community knowledge
Critical HIV/AIDS research certainly exists. The problem, it would seem, is that it is not regularly or thoughtfully taught within the postsecondary classroom. The reason for this, I suspect, is the misguided western belief that “AIDS is over,” whereby “over” means no longer impacting privileged white people within the global north who have unfiltered and largely unfettered economic and geographic access to HIV biomedical prevention methods and treatment strategies.
Further, much of the critical Canadian research on HIV/AIDS focuses on HIV/AIDS struggles, covering topics like biomedicalization, global distribution, sexuality, and (maybe) harm reduction. HIV/AIDS as a site of resistance, however, is not really discussed. The long and rich history of HIV/AIDS resistance within so-called Canada, and especially within Tkaronto, is undertaught. Moreover, in the few instances in which the topic does enter critical discourses, it is almost always narrated around the historical experiences of white gay cis men. When I asked participants in my study, “What is your first memory of HIV/AIDS?” I began to unravel the wounds that these kinds of silences have had on their—on our—sociological psyches.
In my dissertation research, I set out to cultivate a collective memory of HIV/AIDS that might help younger and future generations of racialized and Indigenous folx engage in gender and sexuality resistance within and around Tkaronto and better relate to the work that our elders did in response to the AIDS pandemic. Something I didn’t expect to find is that our first memories of the virus have remained, for all intents and purposes, the anchor of our “activist imaginaries,” because postsecondary institutions and activist spaces are doing little to add HIV/AIDS to that “list of identities” that foreground our otherwise critical syllabi.
For me, this oversight boils down to Canada’s collective failure and/or refusal to educate youth on the ongoing and deeply racialized histories of HIV/AIDS resistance, especially locally, but also translocally and globally. If my research is any indicator, this failure extends to postsecondary institutions. Indeed, it seems that pedagogical narratives on HIV/AIDS resistance might even constitute “the missing curriculum” of Canadian postsecondary education.
Indeed, it seems that pedagogical narratives on HIV/AIDS resistance might even constitute “the missing curriculum” of Canadian postsecondary education.
Questions for educators
In not teaching these histories, particularly from the perspectives of QTBIPOC activists, we feed into the idea that they are not relevant, augmenting the false lesson taught to many Canadians during PK–12 education: that HIV/AIDS is not about us. The negative impacts of this lesson are disproportionately felt among non-white gender and sexual minorities, especially those who are Black and Indigenous, who continue to get HIV and die from AIDS at pandemic rates.
The negative impacts of this lesson are disproportionately felt among non-white gender and sexual minorities, especially those who are Black and Indigenous, who continue to get HIV and die from AIDS at pandemic rates.
Postsecondary educators may not be directly responsible for how PK–12 sexual education programs run, but we are responsible for providing the adults who leave these programs with the critical information that they need to understand the world fully, holistically, and more compassionately. This is the case for liberal arts programs, such as the social sciences and humanities, which pride themselves on their ability to promote ethical “citizenship” within, through, and beyond, the classroom. It is also true for teachers and programs that publish statements against anti-Blackness and settler colonialism, while claiming solidarity with the marginalized and subjugated; whose faculty and students build entire careers upon studying social in/justice. Finally, it is essential for postsecondary programs like social work, critical psychology, and other social-justice therapy degrees that are shaping the minds and hearts of the providers who will one day work with and support those living with HIV or AIDS.
With this, I invite you to ask yourself: what is your first memory of HIV/AIDS? Chances are, it will be a memory mired in stigma, miseducation, and oppressive thinking. Then ask yourself: What, as an educator, have you done to help dispel that myth for your students? What, as a postsecondary student, have you learned to help dispel that myth within the present? What, as a social being, have you continued to hold onto from that first memory? Finally, as an activist, advocate, or organizer, what is at risk if postsecondary schools do not try to rectify the missing curriculum of HIV/AIDS resistance?