In 1990, almost a decade into the AIDS epidemic, activists demanded that the definition of AIDS change to reflect the way it attacked the female body. The diagnostic guidelines for deeming a person as having AIDS (as opposed to being HIV-positive) had been developed by the Centers for Disease Control by collecting reports about the people health-care providers were treating: mostly otherwise healthy white gay men. This meant that whole populations of people, most notably women across race, were not part of how AIDS was understood. Due to these biased guidelines, women infected with HIV and other AIDS activists commonly said, “Women don’t get AIDS; they just die from it.” Women could contract HIV, experience specific symptoms that included cervical cancer and pelvic inflammatory disease, but never receive a diagnosis of AIDS because their illness did not resemble that of gay men.
Activists began calling out all agents of the health-care system, including federal agencies such as the Social Security Administration and the Department of Health and Human Services (HHS), to broaden the definition of AIDS, whose very narrowness meant that women could not access disability benefits, among other issues. The protests brought together three groups that had not before organized together to combat AIDS: ACT UP, then one of the main engines of direct action organizing against AIDS; women who were infected with HIV, many of whom were formerly incarcerated women of color; and lawyers, namely Theresa (“Terry”) McGovern, a white woman who ran the HIV Law Project in New York City.
We meet these people in the opening minutes of the documentary, Nothing Without Us: The Women Who Will End AIDS, by director Harriet Hirshorn and distributed by Women Make Movies.
At its core, the documentary is an utterly necessary and beautiful chronicle of women’s activism, imagined and led by Black women, to render themselves, their risk, and their needs visible in the global HIV and AIDS pandemic and public health responses to it. It puts HIV-infected women at the center of the story as drivers and leaders of a multipronged movement both to care for people with HIV and AIDS and to prevent the spread of HIV among disenfranchised communities. They push back against disparities in sexual and reproductive health, mass incarceration and the criminal legal system, and the neoliberal politics of foreign aid. But the power of the personal story, key to the structure of the film, inadvertently obscures the structural inequality that fuels the spread of HIV and AIDS.
Vote for Rewire!
Rewire is competing for a CREDO grant this month and we need your vote. A few clicks is all it takes for you to help support evidence-based journalism on health, rights, and justice. Vote now to help us speak truth to power, as a matter of fact.
Nothing Without Us takes viewers on a long geographic and historical journey. Place matters in this film. We meet women infected with HIV and living in cities from New York and New Orleans to Bujumbura, Burundi, and Lagos, Nigeria. The filmmakers focus on locations that have not been given enough attention by scholars and journalists writing about the history of the epidemic.
Throughout the film’s 67 minutes, we meet dozens of activists, but five Black women infected with HIV between the early 1980s and late 1990s animate the narrative. Each has created and sustained community-based organizations that provide care and treatment for people living with HIV and/or imagine and implement prevention strategies to halt the virus’ spread. All but one are alive today, struggling to keep others healthy and defying that 1990s-era slogan about women’s death.
Katrina Haslip (1959-1992) is the first HIV-positive woman introduced in the film. A formerly incarcerated Black Muslim woman, Haslip started AIDS Counseling and Education at the Bedford Hills Correctional Facility in Westchester County, New York, in the late 1980s to help incarcerated women deal with HIV. Upon her release from prison, Haslip was at the forefront of the protests to change the definition of AIDS. She died one month before the protests she led forced the CDC to change the definition to include women.
Next, we learn about Jeanne Gapiya-Niyonzima, a Burundian woman, diagnosed with HIV in 1987 while pregnant with her second child. Today, she represents the Burundian National Association in Support of People Living with HIV/AIDS, the first AIDS service organization in Bujumbura. Returning to the United States, we hear Gina Brown’s story of involvement in the Positive Women’s Network, an organization devoted to leadership development for women living with HIV. A formerly homeless Black woman in New Orleans, Brown now advocates on behalf of women living through interpersonal violence. The film ends with the interlaced stories of Morolake Odetoyinbo of Lagos (who runs Positive Action for Treatment Access, an organization that works to support Nigerian women and children born with HIV) and Rev. Joyce Turner Keller of Baton Rouge, Louisiana. Turner Keller heads Aspirations, a street ministry that lets her provide HIV testing and prevention strategies to African Americans across the economic spectrum in her city.
When taken together, these women’s stories provide critically important historical narratives about how women have dealt with HIV and AIDS since the early 1980s.The film follows them to dozens of protests, through multiple public education campaigns, and into government buildings to lobby officials and advocate for women living with HIV and AIDS. We see “die-ins” in the United States, Burundi, and Nigeria, juxtaposed with congregations in global and domestic Black churches where the women reject the shunning of people living with HIV and AIDS.
The film makes crystal clear the connection between AIDS and women’s reproductive health. Three of the women detail their experiences as pregnant HIV-positive women, and in the process, we learn an important piece of the history of treatment and prevention. Gapiya-Niyonzima tells the story of her forced sterilization at the hands of the doctor giving her an abortion after her initial diagnosis with HIV in the late 1980s. Brown describes her decision to take part in the 1994 076 drug trial, the medical study that proved that mother-to-child transmission could be stopped if pregnant women took a particular dosage of anti-retroviral medicines and newborns were given meds as well.
Because of Brown’s decision to join the study, despite her well-founded fears of the medical establishment, her daughter was born uninfected with HIV. Towards the end of the film, Odetoyinbo goes to the hospital to deliver her baby in a planned cesarean section in 2006. She has not only planned the pregnancy after her divorce (she does not disclose how she got pregnant), but also discusses her medical treatment and decision not to breastfeed to keep her baby from becoming infected. In this sweep of stories, Nothing Without Us details a key, yet underexplored, piece of the transnational women’s history of HIV and AIDS and its links with decisions women must be able to make about how and when they have children.
Despite all the things this film get very right, there are a few things I would have liked to see done differently. The film is not narrated, and it builds its story arc through interviews with women living with HIV, alongside women who are HIV-negative and in the fight with them—people like McGovern and Dázon Diallo Dixon of the nonprofit SisterLove in Atlanta. While I appreciate the filmmakers’ decision to center the testimony of women living with HIV, the film lacks sustained discussions of structural inequality as a cause of disparate health outcomes.
The focus on individual behavior—and not structures that make people unwell—is evident in the decision to focus almost exclusively on sexual transmission of HIV and not on how poverty and drug use fuel the HIV epidemic among women. While commentary about economic inequality appears very briefly in the graphics that flash intermittently in the film, it is not among the narratives told by the women themselves. Using condoms, taking anti-retroviral drugs (as prevention or treatment), and HIV testing—the prevention methods most consistently shown in the film—will not be sufficient to end the AIDS epidemic. The end of AIDS will require much more, including on-demand drug treatment, needle exchanges, and economic solutions that address the needs of women.
The film also lacks sufficient historical context when dealing with African women living with HIV. While I commend the filmmakers for making the choice to include stories from West and East Africa (as opposed to Southern Africa, where high prevalence rates sparked much media attention and many public-health efforts), I wish they gave us more details about what was happening in these regions and when as well as how class matters to the work women do in their communities. How, for example, are we to understand the impact of the Burundian civil war and economic embargo that is mentioned by Gapiya-Niyonzima yet never explained in the film? How does the relative economic prosperity of the two African women featured in the film affect their ability to engage in activism? I mention this not to nitpick, but rather to call on the documentarians to provide these critical details so that the film can effectively be used in classrooms and beyond.
Even with these minor faults, Nothing Without Us is a must-see film for anyone interested in understanding what it means for women to be healthy. It maps how women living with HIV and AIDS, particularly Black women, have engaged in political organizing and protest to demand bodily autonomy. In the process, they have made manifest the sexual and reproductive freedoms that will ultimately mark the end of AIDS.