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May 28, 2021
When I sat down to write this post, I had a very clear picture in mind: chart the evolution of HIV representation in film and tv over the past 40 years. I quickly learned this was a nigh-impossible task. Thanks to some excellent advice from friends and coworkers, I settled on a seemingly simpler – and yet equally daunting – task: focusing on understanding my own experience with seeing depictions of HIV and AIDS on screen.
June 5, 1981 marked a significant headline for health: the first reporting of five cases of Pneumocystis cainii pneumonia in the Morbidity and Mortality Weekly Report (MMWR). This report forever changed the way queer people spoke about themselves, how we were seen by those outside the community, and how we were portrayed in media. Within 18 months, the Centre for Disease Control had investigated these and other cases and began to craft the list of symptoms we now attribute to an HIV or AIDS diagnoses.
Forty years later, HIV/AIDS continues to stigmatize marginalized communities. Even as campaigns like U=U grow public awareness and shift public perception of HIV, we are still living in the shadow of four decades’ worth of media-driven conversations about the virus, its methods of transmission, and the people who live with and alongside it.
I wasn’t around in 1981, but by the time I started coming out at age 13, somewhere between episodes of Will and Grace and Queer as Folk, I was terrified of contracting HIV.
As a young gay boy growing up in the 90s, I couldn’t escape talk of HIV, even in my small rural community in Southern Ontario. I remember feeling resigned to the fact that I would contract HIV. I’ve been trying to figure out where that resignation came from – somehow I just knew that gay men were associated with the virus. When I dug deeper, I realized that my fear and my understanding of HIV and AIDS was formed entirely by the media.
Everywhere I saw my gay, cis, white male identity represented, HIV was always present. In most tv shows and films where gay men were on-screen characters, HIV was a central theme. Gay men were sick, dying, and often alone.
In an effort to better understand these connections, I asked some folks I know, and many I don’t, about where they first remember seeing HIV depicted in film or on tv, and I found some interesting commonalities.
Philadelphia was the most common response among Gen-X and older folks, along with a few older Millennials. The 1993 film is easily recognizable and was among the first mainstream films to centre the stories of people living with HIV/AIDS. The film also presents the common narrative that gay people deserve to contract the virus as a punishment for their actions. The defence blames Andrew Beckett (played here by Tom Hanks, who won an Oscar for his portrayal) as deserving to be fired, and for having HIV, because he’s gay.
This theme also appeared in an 1987 episode of Designing Women called Killing All the Right People, in which the titular women have to design a funeral for a colleague dying of AIDS-related illnesses. The iconic Julia Sugarbaker delivers an impassioned retort to a woman who suggests HIV is “killing all the right people,” verbally slapping back at seven years’ worth of homophobic, racist, and classist commentary on the virus.
It appeared again in the 1992 episode of Captain Planet, Formula for Hate, in which the Planeteers fight lies about HIV/AIDS in order to protect a high school basketball player who has contracted the virus through a blood transfusion. This episode was notably based on the real life story of Ryan White, a teenager in Indiana who contracted the virus in 1984 in the same way, becoming a target of harassment and even being banned from his school because of his diagnosis. Our Executive Director, Brandon Yan, shared that this episode was his earliest memory of seeing HIV depicted in the media last December as part of his message on World AIDS Day.
Contrastly, many Millennials I spoke with shared that RENT was the first time they remember seeing HIV/AIDS in the media.
In 1996, when the musical first hit Broadway, the conversation around HIV/AIDS in the media had largely solidified around three common themes: physical contact could not spread the virus; gay men were common (and, often, deserving) victims of the virus; and it was also possible to transmit the virus through blood contact – be it through a transfusion, or shared needles and other implements. RENT, and it’s 2005 film adaptation, takes these themes and runs with them in a way that stands out for the time. RENT doesn’t give people living with HIV the very-special-episode treatment, nor does it overemphasize public health education talking points. Centring the stories of people living with HIV was a sharp departure from the way these stories were being handled on tv. The Beverly Hills, 90210 episode Disappearing Act, which aired in the same year and was my own first time seeing a character living with HIV on tv, does the exact opposite, for example. In this episode lead character Kelly panics over, then learns more about HIV after touching the blood of her infected friend Jimmy. Jimmy’s whole role is to educate Kelly about HIV before dying by the end of the episode.
RENT also departed from tv depictions in the diversity of its characters. Media depictions of gay men and thus of people living with HIV has been heavily dominated by white, cis male characters for much of the past 40 years. Every previous example listed here centres on a white male protagonist, as do many of the other common first time memories I heard: Prior in Angels in America (Broadway, 1993; film, 2003), Ben and Hunter in the American adaptation of Queer as Folk (tv, 2000-2005), Longtime Companion (film, 1988; also one of the first films to explore the toll of HIV), It’s My Party (film, 1996), Dallas Buyer’s Club (film, 2013)… the list goes on. Worse, most of the queer roles in these portrayals were cast with straight actors, further alienating people from the depictions of their lived experiences in film and tv.
In a 2018 list of 31 films about HIV compiled by Out Magazine, only three centred Black characters. This lack of representation is sadly not uncommon. After reviewing several lists with such clickbait titles as ‘The Top HIV Films Since 1985’ or ‘10 Films About HIV to Watch After It’s A Sin’ it is obvious that Black people have been excluded from queer HIV narratives in film and tv.
Narratives about Black people living with HIV and AIDS focus almost entirely on the enduring epidemic in African nations. But the reality is that despite making up just 13% of the US population in 2018, the CDC estimates that Black and African American people accounted for 42% of new HIV infections that year. Many of those people were women. In Canada, it is estimated that Black people account for 25% of reported HIV cases, despite making up just 3.5% of the population. Comparatively, white Canadians make up less than one-third of HIV infections, while making up nearly three-quarters of the national population. The way in which we talk and think about HIV historically and today has been specifically crafted to focus on white men.
It’s important to note that none of the examples of HIV/AIDS representation people shared with me, and none of the lists I found on my own, centred or even included Indigenous representation. While the Ontario HIV Treatment Network (OHTN) states that 11.3% of all new HIV infections in 2016 were among First Nation and Metis communities, despite Indigenous people accounting for only 4.9% of the population, and links this elevated risk rate to the “considerable disconnect” between traditional approaches to HIV treatment and Indigenous worldviews, Indigenous people are absent from pop culture depictions of the virus’ impact. In fact, Healing Inner Voices, a short film created by the Drawing Wisdom project which screened at last year’s VQFF, is the only representation I’m aware of for Indigenous people living with HIV/AIDS.
And therein lies a serious problem. At 13 years old, I was scared of contracting HIV because the virus was synonymous with being a gay man. But what terrifies me today is the realization that for 40 years of pop culture – which crafts and defines our worldviews – entire vulnerable populations were erased and seemingly intentionally excluded from what it looked like to be a person living with HIV or AIDS.
These influences continue today, shaping not only which stories are told, but also how, by whom, and for whom. Early depictions of characters living with HIV and AIDS were crucial to swinging public consciousness towards outrage and action, and generated sympathy for marginalized gay men facing an unprecedented health crisis. Representation in the mainstream, varied and sympathetic, was a step towards liberation. Likewise, a lack of that representation has perpetuated oppression, stigmatization, and violence towards marginalized and racialized people.
As we collectively look towards the hopeful end of a new and modern pandemic, this particular June 5 reminds us to also look at the ongoing portrayal of an epidemic that’s been playing out before us since 1981. When we tell the stories of COVID-19, we need to ask whose stories are being told and why, and we need to acknowledge who is being left out. We need to actively seek out stories different from our own, and demand that marginalized communities be given the screen time, care, and attention they deserve. They deserve to be portrayed authentically and with their full complexity, lest they continue to be oppressed.
Representation is a step towards liberation.
– Sam Snobelen, Program Logistics Manager (he/him)
Ontario HIV Treatment Network’s report on the Unmet Needs of Indigenous People Living with HIV
Aboriginal HIV and AIDS Statistics compiled by the Canadian Aboriginal AIDS Network
Fact Sheet for African, Carribean, and Black Canadian HIV/AIDS Awareness Day 2019
The CBC’s Dr. Peter Diaries (1990-1992) are an intimate and unflinching look at life with HIV. Dr. Peter Jepson-Young, founder of the Vancouver-based Dr. Peter AIDS Foundation, shared his lived experience with CBC-TV’s national audience. The footage remains freely available for viewing today.