What motivated you to do a film about the impact of HIV on the black community?

Face front (L-R): Claudia Pryor Malis and producer David Guilbault

This story has followed me around for a long time. As a journalist, people always ask me how I come up with my stories. I think the really important ones find you. This story has been a part of my professional existence for over 25 years. I was a television news producer in 1981 in San Francisco, and I watched colleagues disappear due to the virus. Back then it was called GRID, gay-related immune deficiency disease. At that time in America, it was mostly white gay men who were known to be infected by the virus. In 1987, as a producer of ABC’s World News Tonight, another reporter and I were the first to do a story on HIV infecting minority populations. We actually had to fight to get it on the air because the notion was that this was a gay white male disease. We were obviously ahead of the curve. Fast forward to 2000, Frontline asked me to do a documentary about homophobia. At the same time [as the original story I did in 1987], I lost someone very close and dear to me to AIDS—my cousin Henry. I watched him die. He was here one moment and gone the next. It was in 1986, when people just disappeared in a matter of months.

How do you feel HIV is viewed today?
Most Americans believe that AIDS has died down and gone away. To me, that is profoundly racist because now mainstream society feels it’s no longer worth noticing who has the virus. Some of the reasons why we’re disproportionately infected and affected by the virus are macro, and some are micro. It’s interesting because this virus intersects with a lot of the realities of being black. It intersects with poverty; it intersects with racism; it intersects with secrecy and very strong feelings about masculinity and the Bible, which creates homophobia in our culture. That is what my film is about, trying to connect the dots between all the things that cause HIV to flourish in black populations.

Do you believe that stigma has hindered the prevention and treatment of the virus among African Americans?
Stigma is something that we as a group constantly face and, frankly, we try to avoid it. As African Americans in the U.S., our entire history here is about being forced to live through stigma that is certainly undeserved. HIV is just another issue that hits us. The problem is that we have an even more compelling reason to face it and fix it. Stigma and fear of stigma are ultimately less helpful to us than facing the painful honesty of why this virus hurts us so much and what specifically we can do about it.

It comes down to a choice between fear and self-love. If we love ourselves enough, we’ll take the steps we need to protect ourselves. Right now, I don’t think we’re doing all we can to do that.

Do you feel that labeling HIV as a “black disease” is another stigma, or do you consider that a reality based on the numbers?

I consider it a reality based on the numbers. But the fact is it is both a reality and a stigma. I think that we carry the burden of both these things and we would do better to focus on the reality rather than the stigma. If you focus on the stigma, you’re really focusing on what other people think of you. By focusing on the stigma, we’re ultimately trying to fight for someone else’s approval, and suffering because we don’t have it. If you focus on the reality that this disease makes us unhealthy and the need to explore ways to make ourselves more healthy, that, to me, is an expression of love.  

I wish we loved ourselves enough not to care what anybody thinks of us. If we had that level of self-esteem, we’d have better tools to fight the virus. I didn’t come to that conclusion by myself. I spoke to a lot of black experts who have been working in the field of HIV prevention and treatment for a very long time. They helped open my eyes.

Why did you want young people to be a part of the film?
I received a grant from a program in the National Institutes of Health called the Science Education Partnership Award Program. Their mission is to promote informal science learning among kids. I found my way into the Pittsburgh school district and ran right into stigma and resistance. I remember standing in a biology class and telling students that I would like their help in making a film about HIV. Many of the students were upset and said things like, “You’re just here because we’re black.” Finally, I got tired of all that and I said, “Yeah, that’s exactly why I’m here. I’m here because I care that the majority of the people who are living with the virus are black, but no one is paying any attention to us.” When I got that clear and honest with them, a few brave souls signed up to be a part of this project.

What was the students’ favorite part of the filmmaking process?
More than anything they loved to ask questions. What was most important to them was gathering the information. The questions that the students asked and the answers that they received were so honest and direct that I realized that having them be an active part of the process was the best idea I had for the entire film. Young people have fewer agendas than older people do; they’re just closer to their truth. Furthermore, the interview subjects wanted to get their truths across so they gave better answers to the students than they did to the adults. The students became the core of the film.

From what the students tell me, the film impacted them in many ways. For many of them, discussing HIV made them connect the dots and look at the larger black experience in the United States. It made them understand why this is a “black disease.” Ultimately, it made some of them get tested for HIV. I’m hoping that the film sparks a conversation in our community. But, more than that, I hope it helps us deal with some of the internal reasons why this virus flourishes and motivate us to change what we can control.

The filmmakers submitted  Why Us? Left Behind and Dying to be considered for an Academy-Award nomination. The film is screening September 9 to 15 at Laemmle Theatres Grande 4 in Los Angeles and from September 11 to 17 at the Independent Film Channel Center in New York City. For more information, visit here or click here.