"I can look back at a show like Girlfriends and see how they dramatized living with HIV; how the character made a quick appearance and then died. For the time that it came out in the early 2000s, the reality of living with HIV had already started to change. I haven't really seen anything today on TV that presents a modern way of looking at living with the virus or anything that reflects my own reality." Isaiah*, a 41-year old, African-American gay man who has been living with HIV for 16 years.
Forty years after the first reported cases of HIV, and at a time when nearly six in 10 Americans wrongfully think that "it is important to be careful around people living with HIV to avoid catching it," with 89% agreeing that there is still a stigma around HIV (GLAAD and Gilead's State of HIV Stigma survey, 2020), the populace remains in dire need of both education about and positive representation of those living with HIV in television, film and media.
Television and film can be used as an important communications tool and have a lasting impact. A study found that a statistic mentioned on Grey's Anatomy—that HIV-positive mothers receiving treatment have a 98% chance of having a healthy baby—both educated and was retained by viewers almost two months later (Television as a Health Educator: A Case Study of Grey's Anatomy, The Henry J. Kaiser Family Foundation, 2008).
Early representation of HIV-positive characters came with the 1985 film Buddies and the made-for-TV movie An Early Frost, months later, which is often seen as a precursor to Philadelphia. While other network shows and soap operas have introduced HIV-positive characters over the years, currently, there are only three regular characters who are living with HIV on television in the 2020-2021 season across broadcast, cable and streaming services—and all three are on FX's Pose (GLAAD's Where Are We On TV report, 2020).
Windy City Times spoke with two Chicago residents living with HIV, in addition to a medical professional, local cultural scholars, and an executive from GLAAD about the state of HIV-positive character representation.
Windy City Times: Understanding the importance of accurate representation for HIV-positive characters, are there any pivotal moments in queer cinema or on television that did the job of driving greater acceptance?
Dr. Jennifer Brier, director and professor of gender and women's studies and history, UIC: Philadelphia was a key film. The history of the representation of LGBT characters—and, particularly, people who are living with HIV/AIDS who may, at the time, have been called "AIDS victims"—involves a change in nomenclature that has always been complicated. While visibility is critical, actually seeing accurate and empathetic representation of human struggle and experience is deeply important and one of the ways that change happens.
Rich Ferraro, chief communications officer, GLAAD: You can't look at Philadelphia without looking at the context of the time it was released. Having Tom Hanks play that role brought the discussion of people living with HIV to broad mainstream America at a time when people living with HIV in mainstream storylines were all but invisible. If you look at shows like Noah's Arc, that highlight the nuances of living with HIV and the intersection of living with HIV, being queer and being Black in America today, that's one thing that we see in shows like Pose, as well. These characters are not just speaking about living with HIV, they're speaking about being trans, being Black and about intersectional issues.
Mack*, a person of color who's been HIV-positive for almost two decades: Even before I was diagnosed, I remember watching ER and the African-American female doctor [Gloria Reuben's Jeanie Boulet] was diagnosed with HIV. I was surprised because she's wasn't gay. I had to do research to understand that this is not a gay disease and it's not a male disease. Straight women can have it.
Brier: Philadelphia had a really important and powerful effect on U.S. culture, but it also showed things in a very particular way. Which is a way that we know has been much more of a myth than a reality. You see a white, gay man dying of AIDS and Tom Hanks was certainly not gay, not infected with HIV, not dying of AIDS, and so it's part of the performance of that. But it also served to reiterate through the representation the idea that AIDS was a white, gay male disease. Those are myths that, unfortunately, have real currency.
Mack: From everything I saw [on TV and in film], I thought that HIV worked really, really fast. I thought, "Do I have a week? Do I have two weeks? Do I have a month?" That was my first concern: the timing of the disease and how quickly it can take hold of you.
Dr. Maya Green, regional medical director, Howard Brown: When people I see have a story that's related to something they saw in movies, we sometimes get Dallas Buyer's Club, especially with medicines. Some people are still on it, but it was kind of rough to take. The main thing I tell them is, "Whatever that person's truth is, it spoke to a time when we didn't have medical technology to develop medicines that helped people living with HIV to live a long, healthy life." Then I usually show a chart of all these medicines that usually work, and let them know that we do have to customize them to individual needs. I tell them, "The medicine and the medical technology is updated, but a lot of times, not only in the community, but in the health care industry, we haven't updated the conversation."
Brier: You see a TV show like Pose, where the characters are much more racially diverse, the actors are trans and queer people of color. They're talking about the same moment in time as Philadelphia, but it's a totally different representation of what survival looked like, how communities managed to create possibilities for freedom, survival and care for one another. They were made 20+ years apart, so you see how historical thinking has evolved about AIDS, but also how we've tried to unpack the idea that AIDS was once a white, gay male disease. AIDS has always been an illness that is structured by both sexuality and race.
WCT: How has HIV-positive representation changed over the last four decades? Any notable trends?
Ferraro: If you look back to a lot of the LGBTQ-inclusive content from the '80s and '90s, ... The Hours, Angels in America and Rent really opened up people's eyes to what living with HIV was like and reinforced the importance of talking about HIV prevention. Then if you look at the late '90s to the 2000s, there were shows like Queer As Folk and, more recently, How to Get Away with Murder, that included HIV as part of the narrative when speaking about LGBTQ lives, and showcased characters leading long and healthy lives. HIV was a part of their story, but not the center of their story.
Dr. Nick Davis, associate professor, English and gender and sexuality studies, Northwestern: One surprising trend in film is that there aren't more HIV/AIDS narratives that don't feel like they have to be returned to the moment of initial response in the '80s. I think that our portraits of activism and community impact in the early to late '80s get more textured and inclusive as time goes on. I'm just surprised there are not more stories of people living with and managing HIV now; that's something that still feels pretty under-exploited.
Brier: I would argue, as a historian of AIDS, Pose is probably one of the most positive representations of what it means to survive, what it takes to survive, and what it means to have a community that helps you survive of any [television shows] I've ever seen in the last 25 years of doing this work. What I love about Pose in many ways is that it's about why communities of color were the leaders in thinking about systems of care when the state was not interested in that.
Davis: I also do appreciate that I remember the first years of seeing characters who were conveyed to me as having AIDS were always dying from it. It's refreshing to feel like not every character with HIV/AIDS is medicalized in the same way as it was in the past, or presented using all the tropes that used to be so common—it's not all about Kaposi sarcoma, or being on a deathbed. We've gotten better at not limiting ourselves to that archive of images, but I would love to see a more robust idea of what we're doing instead.
WCT: What are your thoughts on whether it's Hollywood's responsibility to educate viewers? And what are good solutions to the problem of accurate portrayals?
Ferraro: I think Hollywood can play a big role, but Hollywood can't and should not do it alone. National and local LGBTQ organizations need to continue to prioritize sharing stories about people living with HIV, speaking about HIV treatment and prevention. But also starting to introduce discussions around PrEP and HIV testing because those are discussions that queer people should be having more of.
Brier: I think it's all of our responsibilities. I think we need more representation of HIV-positive people in literature, in poetry, not just popular culture. We need it in scholarship and to be seen as scholarship, we need it in real comprehensive sex and health education. We need it in adult education where we actually talk about the ways that we love and are in relationship with one another. We need it in health care if we're going to talk about what it means to be healthy.
Green: The best place to update narratives and the conversation is in the community. A patient is with me 15 minutes. They're going to be with their community, their family, their loved ones for 23 hours and 45 minutes out of the day. When a person is seeing [negative stereotypes about HIV on TV], it helps to have a support group they can trust to help while they unpack that. Unfortunately, the fear of living with HIV is what people recall from the media when people show up in the office. You have some [television] shows that are doing the work of updating that narrative, which is great, but in the health care industry we also have to update the narrative.
Ferraro: Hollywood had been a leader in telling HIV stories in the early '90s and now is suffering from nearly complete invisibility of people living with HIV. So, our commitment was released earlier this year with the "Where We Are on TV" report: We're challenging Hollywood to add characters living with HIV storylines. That commitment will turn into a community working group later this year made up of HIV advocates, people who work in HIV prevention, especially across the U.S. South, and people working in Hollywood who have a deep understanding of HIV and how to create storylines with HIV that are fair and accurate.
Green: Stigma is an infectious disease of the mind and it kills more people than HIV ever could. I say this every chance that I get: to kill the stigma, we vaccinate with education. We have to fight stigmas by leading with facts, and facts are, if you get screened early, and you start on medicine early, you can live a long, healthy life.
Dr. Jennifer Brier is the author of Infectious Ideas: US Political Responses to the AIDS Crisis, and the recently launched "I'm Still Surviving," an online exhibit of the oral histories of women living with HIV, at StillSurviving.net . Rich Ferraro is the chief communications officer for GLAAD and executive producer of the GLAAD Media Awards. Dr. Maya Green is the regional medical director for the south and west regions of Howard Brown. Dr. Nick Davis is the author of The Desiring-Image: Gilles Deleuze and Contemporary Queer Cinema.
*Names have been changed at the request of the interviewees.
