Nothing Without Us: The Women Who Will End AIDS, directed by Harriet Hirshorn, thoroughly examines the lives of the many black women who have been disproportionately affected by HIV. Through their battle with the virus, there comes a blinding blanket of invisibility that shields their stories from the rest of the world. Since the onset of the HIV/AIDS epidemic in America, the infection was known to be a disease for gay white men littered in the queer enclaves of San Francisco and New York City. For the most part, the world has remained ignorant to the virus, simply thinking it’s something that just still affects gay men.
When the AIDS pandemic broke out in America, several activist groups started in efforts to help bring awareness and prevention for the virus. There was ACT-UP (AIDS Coalition to Unleash Power), which started in March of 1987, and GMHC (Gay Men’s Health Crisis), which began in 1982, among many others. During these early days, the world didn’t know what to make out of a virus that was aggressively killing off hundreds of gay males. The media pondered and attempted to find out.
“Two rare diseases have struck more than 100 homosexual men in the United States in recent months, killing almost half of them, and a medical study group has been formed to find out why,” reads a 1981 The New York Times report, titled, “2 Fatal Diseases Focus of Inquiry.”
Eventually, the mysterious disease was identified, and thousands in the U.S. were dropping like flies. Amid the pandemic, as white gay men became the face of the virus—both those who were infected and politically fighting against it—women who were infected by the virus, or advocated for it were somehow forgotten about.
The film chronicles the contributions women gave to the movement, and at times, also fought against the unfair treatment of those who were affected by the virus.
There’s Katrina Haslip, who was incarcerated at Bedford Hills Correctional Facility in New York, and found out she was HIV positive while in prison. While incarcerated, she co-founded ACE (AIDS Counseling and Education) along with fellow inmates Judy Clark and Kathy Boudin. Haslip also fought to change the definition the Centers For Disease Control and Prevention had for HIV, which excluded symptoms that women who were HIV positive were experiencing—like pelvic inflammatory disease and vaginal candidiasis, a yeast infection. Because of the CDC’s strict guidelines, infected women didn’t have access to treatment.
Subsequently, she became a defendant in a case against the Federal Government, which in turn, helped changed the definition of the virus and was now inclusive to women receiving the treatment they needed. Theresa McGovern, from the HIV Law Project, fought alongside Katrina. Haslip died in 1992 of AIDS shortly after the new legislation passed. She was 33 years old.
Among their white and Latina counterparts, black women are infected with HIV at higher rates. The CDC reports that in 2015, “4,524 African American women were diagnosed with HIV, compared with 1,131 Hispanic/Latino women and 1,431 white women.”
Yet this issue isn’t solely in our backyards; it transcends the world and is highly prevalent in Africa. Hirshorn excels at documenting the virus’ impact on a global level, and introduces viewers to Nigerian activist Morolake Odetoyinbo and Burundi advocate Jeanne Gapiya as they grapple with their infections simultaneously fighting to end the root of it.
VIBE spoke to Hirshorn about the importance of shining a light on the women who are on the forefront on the fight against HIV/AIDS, and on raising awareness for the cause.
VIBE: Why do you think people are still so ignorant to the HIV/AIDS epidemic?
Harriet Hirshorn: The ignorance is probably because the people in the U.S. anyway, they are most likely to be impacted by this epidemic. People of color, communities of color, lower income communities. I feel like the dominant culture tries to keep everyone else marginalized, and one way of doing that is not having the information that we all need to have accessible, so there is this kind of rapid ignorance.
I think because AIDS has become this structural issue people kind of think that HIV doesn’t really exist. In the mainstream world, and basically the rest of us who are not in that world who know that it does still exist—there’s no place where the gap is bridged. And probably one of the biggest challenges of making this film was not knowing where that bridge was. To put that information in the film because it’s 67 minutes long, but there are so many things that I wanted to include especially when I started realizing the level of ignorance just in the general population.
What did you want to include that you had to leave out?
I wanted to include a woman getting ready to get health insurance when they were against the medicaid expansion, and she was panicking. She was just panicking that she wasn’t going to be able to get her meds anymore. She wasn’t sure that if she knew where to get the right ones. Was her treatment going to be interrupted, where her CD4 cells going to go right back up, or where they going to plummet; was she going to get sick?
I wanted that to be acted out in a sequence because I actually had the material for it, but then I realized I couldn’t put that in there. Basically I described the structural barriers to having people access things, and that’s on a card now instead of as a sequence because it was too much to fit in.
Why were women not being treated for HIV back when it started? Were they not allowed to get an HIV test?
It’s even weirder than that. Women were HIV positive, and sometimes they had no T cells at all. But the diseases that they were catching—the opportunistic infections—were not on the CDC’s list. So women who were HIV positive, some of the first opportunistic infections they would catch would be things like pelvic inflammatory disease. Well, that didn’t qualify as AIDS, but that’s what HIV positive women were catching, and HIV negative women don’t ever get it.
So it’s pretty obvious that it was an AIDS defining symptom. But because the CDC had only studied men at that point, that wasn’t on their list of an AIDS defining symptom. So the definition of what was AIDS, was what had to change. Everybody knew that these women were HIV positive. Their medical folder would say HIV positive, but not AIDS. There was like a stamp that said that on their folder.
So they weren’t allowed to receive treatment?
They didn’t get treatment. They didn’t get access to any of the benefits they would have access to had they been considered to be living with AIDS, and not just HIV. I mean unless they can pay for it themselves they could have access to Bactrim. If there were any kinds of treatment out there, AZT, anything else, they didn’t have access to it.
At that same time, women were trying to get into clinical trials. But they weren’t accepted because if you can get pregnant, and were of baring age they wouldn’t accept you in a clinical trial. So that means they couldn’t test on women, just men.
In those days, being in a clinical trial was one of the ways to get access to treatment. If you couldn’t get it through your doctor, you could enroll in a clinical trial. I think that’s what a lot of poor people did. They try to get themselves in a clinical trial, and that way at least they know they’d get some medicine.
How effective do you think activism is in this present day considering ACT-UP, and other organizations like it, usually meet at LGBT safe-spaces, like The Center in New York City? Is the message still getting across outside of the LGBT community?
That’s a really interesting question because I feel like it’s gotten less personal, and more political. In the sense one of the things that ACT UP did, and I feel in a sense is really palpable is that just before the Affordable Care Act, everybody was talking about the notion of the single pair. I feel like the existence of groups like ACT UP, and other health oriented groups. That has been an overwhelming, and undying influence. In this very kind of microcosmic way they tackled the fact that access to health care was not equitable.
Now, that’s been a real consciousness thing. I think the American public started to think maybe we all deserve a right to health. Like maybe that should actually be a human right. Maybe it shouldn’t be something that can be bought and sold. I think that ACT-UP really contributed to the raising of our consciousness. Does it relate to us in the same was as gay people? Probably not. It’s much more of a mainstream issue now. I think that’s kind of what were seeing with the group Rise And Resist. There are a lot of old ACT-UP people in there.
In the film you feature people that wouldn’t be expected to be the face of HIV. Like Dr. Joyce, a pastor from Louisiana who goes around testing others, and promotes safe sex. Do you have a deeper reasoning for including that?
We did want to focus on women who were living in high prevalent areas, and Baton Rouge is the second prevalent area of the U.S. There were many, many women who were really interesting. There were a couple of young women, and there were a couple of women who were born with HIV. There was a spoken word artist named Mary Bowman. There were many people that we interviewed for this. And was actually really hard to whittle it down to the five that were in it. It would’ve been great if it was a series of 50 women rather than five.
Joyce just seems to be really good at galvanizing people, explaining things, and making them get an HIV test. I think she’s really daring. She just gets people to respond, and yeah we didn’t choose her because of her being unusual in any way, it’s because it’s in her DNA she is really a community worker.
Did you ever think about mentioning the HIV preventative drug, PrEp in the film?
I have the same feeling about PrEp as I do about microbicides. That we are really talking about HIV negative people, and the film really focuses on HIV positive people. All of those characters in the film are living with HIV. When people in Burundi were sitting on the waiting room of the medical hospital, all of them are living with HIV, all the families are living with HIV, all the kids.
The focus of the film was to make something empowering for people who are living with HIV. PrEp, and microbicides are really interesting. Personally I think PrEp is amazing, the issue for me is how do you make it accessible for people who really need it.
What do you hope the public takes away from this project?
I want people to take away the notion that HIV affects everybody. It’s not over, and that it’s still a global problem. The other really loud message would be everybody who needs to be on antiviral therapy should have them. Also, acknowledge it and recognize that women have been at the forefront since the beginning. Women have been living with HIV from the very beginning.