Early Latinx AIDS Activism Holds Lessons for Today

Fernando Marsical speaking at Hidden Histories; background photo of Latina/o Caucus members also by Fernando Mariscal
Molly Gingras

In 1990, shortly after the formation of the Latino Caucus of the pioneering AIDS activist group ACT UP, the caucus decided to make its first direct action the infiltration of the annual meeting of Somos Unos (We Are One), a lobbying group for Hispanic businesses in New York state. They chose this target to confront and denounce the lack of action on AIDS by the New York City Latino community and to demand a response from Somos Uno attendees.

To infiltrate, remembers caucus cofounder Cesar Carrasco, he and other caucus members put on corporate apparel to pass as "respectable" Latino businessmen and mingle with some of the most powerful Latino businesspeople in New York state. Security guards let them walk in without a problem.

"We looked pretty smart and sharp in our suits and ties and looked just like any other come mierda [shit eater] there," recalls Carrasco, 62. "We hid a stack of flyers and fact sheets inside our jackets and, once inside the room, we started passing them out to everyone. These were fact sheets listing the awful numbers and situation of the Latino community impacted by the plague." (At that time, Latinos accounted for about 17% of all AIDS cases nationally.)

Cesar Carrasco speaking at Hidden Histories (Credit: Molly Gingras)
Cesar Carrasco speaking at Hidden Histories
Molly Gingras

"We were condemning Somos Unos' institutionalized denial of the lethal health crisis that had reached epidemic proportions among Latinos," continues Carrasco. "Little by little, the partygoers went from jovial laughter to blank expressions as they realized that their fabulous cocktail party had been infiltrated. It took a while, [but] the mood in the room changed to somber, or angry or both. At some point the security men showed up and, one by one, we were forcefully removed from the happy party."

Carrasco, currently a psychotherapist, related this story to a rapt audience at the recent Visual AIDS conference "30 Years of ACT UP/NY: Hidden Histories and Voices, Lessons Learned," where longtime and newer AIDS activists from ACT UP and allied organizations shared overlooked but crucial narratives in the history of the HIV/AIDS movement.

Carrasco and other members of the Latino Caucus (which later became the Latina/Latino Caucus to reflect the inclusion of women) recapped the work carried out by a diverse group of men and women from various parts of the U.S. and the Global South. Before the caucus formed, there was already a visible Latinx presence at weekly ACT UP meetings. In late 1989, ACT UP member Robert Garcia invited any interested Latinx members to meet and explore how to work on issues specifically impacting their community. Shortly thereafter, participants decided to work as a closed caucus, meaning that the group could decide who participated.

According to Carrasco, that decision provided a space to counteract the power dynamics of the larger group and create a space for Latinx discussion, an idea that resonates in the current climate of intersectionality. "Not fully knowing it then," he says, "the members of the caucus had from its inception a broader and more global perspective on how the AIDS crisis in the Latino community had a series of particular issues that only [we] could understand."

The Somos Uno action, which happened just a few weeks after the group's formation, both tested and proved that group members could trust and protect one another in their actions to come.

Flyer for first meeting of what would become the Latina/o Caucus (Flyer by Robert Garcia; photo credit: Fernando Mariscal)
Flyer for first meeting of what would become the Latina/o Caucus (Flyer by Robert Garcia; photo
Fernando Mariscal

Early on, the Latino Caucus decided that it would focus on and fight against the lack of access to appropriate health care, information and education on AIDS in not just the Latino community but other communities of color throughout the country. This approach contrasted significantly with ACT UP's central agenda at the time of hastening the development of HIV/AIDS drugs. While the caucus did participate in many of ACT UP's actions, it created several notable campaigns aimed at their core concerns of helping Latinx communities inside the U.S., in Latin America and throughout the Global South.

It may seem unimaginable now, but when the Latino Caucus met with other LGBT groups in 1990, they were criticized by most for their desire to participate in the 1990 Puerto Rican Day Parade, which was perceived as too conservative to even acknowledge the issue of HIV/AIDS in the community. But the caucus forged on and, rather than seek a permit to march that they did not expect to receive, they simply wove their way into the parade. While marching, they distributed thousands of flyers with information about where to go be tested for HIV or to get treatment, education and information about AIDS.

"For the most part, we were welcomed with incredible euphoria by the public flanking the avenue," says Carrasco.

The caucus then set its sights on larger targets. Puerto Rico's rate of new HIV infections in 1990 was three times the U.S. national average. "Stigma associated with being HIV positive was very strong, and many people with HIV were isolated and died not long after diagnoses," says Luis Santiago, a member of the caucus and still a current ACT UP member. There were few available treatments, and the government was mostly silent on the issue.

So, that summer, about 40 caucus members went to Puerto Rico to denounce the government response. Their multi-faceted campaign included a meeting in San Juan between the U.S. National Commission on AIDS and members and local activists, rallies with ACT UP-style die-ins and such Puerto Rican traditions as a baquiné (child funeral) to represent babies dying of AIDS in Puerto Rico. Additional activities included school and community teach-ins, often led by the women of ACT UP, and community risk-reduction workshops in San Juan led by members of ACT UP's needle exchange committee.

Flyer by Cesar Carrasco, a collage made from old family photograph/s (Courtesy of Fernando Mariscal)
Flyer by Cesar Carrasco, a collage made from old family photograph/s
Fernando Mariscal

The events culminated in a protest match that drew hundreds of participants and resulted in the eventual formation of ACT UP Puerto Rico and the expansion of HIV/AIDS programs and funding in the territory. Santiago says that the group learned that "intercultural activist collaboration works, but it needs to be led by local activists," a lesson that is still timely today.

Another group, ACT UP-Americas, grew out of the Latino Caucus and conducted activism in the Global South, including the creation of Boletín de ACT UP Americas, a Spanish-language newsletter on HIV-related news distributed throughout Latin America. It also created a medicine and equipment recycling program for Latin American NGOs. (Learn more about current medicine recycling programs here.

Many issues tackled more than 25 years ago by the caucus still exist in some form today. According to Santiago, Latinx communities still need to scale up HIV testing -- "especially [among] young transgender, gay or men who have sex with men" -- access to treatment for HIV-positive folks so they remain undetectable and access to prevention tools such as pre-exposure prophylaxis (PrEP) for those who are negative but at risk.

Another insidious threat to Latinx health, according to Santiago, is the potential dismantling of the Affordable Care Act (ACA), also known as Obamacare. Although a dramatic July vote in the U.S. Senate quashed those efforts for the moment, neither congressional Republicans nor Trump is giving up on the effort.

"The most harmful impact of dismantling or defunding the ACA would be felt by people insured by Medicaid," says Santiago, adding that, as of 2014, nearly a third of Medicaid enrollees were Latinx, at a total of 17 million covered (or nearly a quarter of the total U.S. Latinx population).

Latina/o Caucus protesting in Albany, 1990 (Credit: Fernando Mariscal)
Latina/o Caucus protesting in Albany, 1990
Fernando Mariscal

Yet, everyone at the event agreed that the lessons the caucus learned back in the early 1990s still apply to Latinx activism today.

Said Fernando Mariscal, a caucus cofounder and founding member of MHOL, Peru's first LGBT advocacy group, and now currently program director at Community Access: "What brought us together, besides our response to AIDS, was the complexity of our identity, our experience of migration, exile, language, political affiliations and our commitment to social justice. And it was this particular sense of place and identity that shaped our activism. Once we had embraced 'otherness,' we were able to define our role within the movement."

Go here for more on current Latinx HIV/AIDS activism.