“Endgame” Shines Spotlight on Stigma, Silence Surrounding Black HIV/AIDS Epidemic
For the first time in two decades, the United States will host this year's International AIDS Conference, to be held next week in the nation's capitol.
Despite having larger numbers of new cases of HIV/AIDS than countries with double its population and far less of its economic resources, America has seemingly turned a blind eye to an epidemic that's been crippling communities within many of the country's biggest cities for nearly a quarter century.
But with the return of the International AIDS Conference to U.S. soil, it's also clear that Americans are realizing that they can no longer afford to look the other way when it comes to HIV/AIDS.
As government officials, medical professionals and activists attending the conference prepare to share knowledge and develop plans to deal with the epidemic both stateside and abroad, one local filmmaker is focusing her lens on the tremendous impact that the virus has had -- and is still having -- on America's Black community.
In her latest film “Endgame: AIDS in Black America”, Renata Simone shines a spotlight on the evolution of HIV within the African American community, presenting viewers with more than a dozen intimate interviews with men, women and youth who’ve contracted the disease; family and friends of HIV patients; medical professionals working to keep patients healthy and alive; activists working to raise awareness and encourage prevention; and high-profile figures like Magic Johnson and NAACP chairman Julian Bond who've influenced how Black people view and address the epidemic.
A media maker whose work has won her numerous accolades, including two Emmys and a Peabody Award, Simone has been covering HIV/AIDS since its earliest days. Her Peter Jennings-hosted television series "The AIDS Quarterly" and 2006 documentary film "The Age of AIDS," which looks at how the virus has manifested globally, were groundbreaking journalistic endeavors that brought viewers face-to-face with the depth and reality of the disease. "Endgame" continues Simone's exploration of the evolution of HIV/AIDS, making fluid and thoughtful transitions and connections between the varying elements that have created a health crisis of epidemic proportions within Black America.
Gay black men were among the first to contract the mysterious disease within the African American community; as “Endgame” reveals, cases of Black patients who'd contracted the virus were often under-reported or not reported at all. Such oversights effectively ushered in a culture of silence when it came to the Black community and HIV/AIDS.
Fear of the virus also manifested as backlash against homosexuality, and "Endgame" deftly examines how taboos and stigma around homosexuality -- and around sexuality in general -- has been widely propagated by the Black church.
Though the possibility of contracting HIV/AIDS is clearly no longer limited to gay men, as "Endgame" shows, in the Black community, myths about the disease developed decades earlier still prevail. And yet, both the film and recent reports and statistics clearly indicate that heterosexual African American women have quickly become the new face of the disease. One of every four new cases of HIV are contracted by women; two of every three of those women are Black. The most common form of contraction and transmission among Black women of all ages and socioeconomic status is heterosexual sex.
In a particularly poignant moment in the film, devout churchgoer and grandmother Nel talks about how she discovered she’d contracted the virus after finding her husband’s diagnosis in his bible. Though it’s been several years since she learned she is HIV positive, the long pauses and shakiness in her voice as she tells her story shows that she's still coming to terms with the idea that her partner – a deacon in their church – had kept quiet about something that is a matter of life or death.
“I think that that’s one of the big messages of the film,” Simone says. “It’s that secrets – especially in the case of HIV – can kill.”
On the eve of the premiere of "Endgame" on PBS's Frontline, I spoke with Simone about what Black America and society as a whole can learn about itself by delving into the dark past of the disease and illuminating the humanity of those impacted by the virus.
What got you interested in HIV and AIDS, and what’s held your interest in the topic?
What initially attracted me to it was just how complex it is, and that here is a preventable disaster. When I first started covering it in ’85, it was complete hysteria – people not wanting to shake people’s hands, kids’ homes were being firebombed – it was really calamitous. And I thought that the injustice was something that I really could get interested in covering. We all have tragedies in our lives that are not preventable. Here’s something that’s terrible, but you could prevent it!
What do you think society has discovered about itself through its efforts to understand how the virus spreads, prevent transmission and develop a cure?
HIV is like a flashlight, and it illuminates persons that we wanted to keep hidden. At the cultural level, it shows who fell through the cracks. It shows the big consequences of policies that are made without a real understanding of how it’s going to affect people. And then all the way down to the personal level, it’s a flashlight that shows what happens when we keep secrets, what happens when we hold stigma, what happens when we keep silent.
Like HIV and AIDS, race is still a taboo topic, even though it’s everywhere. Do you think that the election of a Black president meant that race could be discussed more openly, and that there could be more discussion about why HIV/AIDS has had such a devastating impact in Black American communities?
The fact that [Obama] won the election, that meant that the majority of Americans believe that a Black man can hold the highest office not only in the country, but probably in the world, and that we better start paying attention. In that way, I think it’s an opportunity for healing and for a conversation to happen. The first step is this conversation.
I’m curious about your relationship to storytelling and the storytelling tradition in Black American culture and history. What role can storytelling play in starting to bring more awareness to HIV/AIDS? How do you think this film and giving people who are impacted by HIV/AIDS an opportunity to tell their story wil start that conversation?
I went all over the country to interview people [for the film], and I said to them, ‘You may have noticed, but I’m white.’ And they say, ‘Yeah, but do you notice anybody else here who wants to listen?’ People hadn’t told their stories, and I have had so much feedback of people writing and calling and emailing and saying, ‘Just telling you my story changed my life. I was able to see myself in different terms and in a more cohesive way that made sense. I feel more secure in who I am because now my story makes sense.’ I was going to call this film “Testimony”, [to acknowledge] that notion of testimony and how powerful that is.
There was a piece of research that came by that changed my life. It said that nobody changes their behavior unless they have a first hand experience. If you do it really, really well, you can make people feel like they had a first hand experience through telling stories. You transport people through the story and make them feel like they experienced something, that they met someone they never would have the opportunity to meet in their own limited life. I wanted to use media to help people’s lives be better, and help them avoid this virus.
