Project unearths voices from one of the world’s first HIV/AIDS service organizations

Sometimes you discover history in a garage, stored in dusty boxes, or in memories that go unspoken for decades. Often, it falls to the next generation — curious and respectful — to do the necessary work of sifting, sorting and asking questions.

A groundbreaking project spearheaded by Binghamton University, State University of New York's Human Sexualities Research Lab did more than add to the history of Gay Men’s Health Crisis (GMHC), the world’s first major HIV/AIDS service organization. It also breached a generational divide and pioneered new ways to conduct oral history.

“It ended up being probably the most transformative experience of my professional and personal life so far,” said Casey Adrian ’22, MSW ’24, the first author of two publications connected with the project. “As a queer person, it totally transformed the way I think about the community that I’m a part of.”

Co-authored by Binghamton University Associate Professor of Women, Gender and Sexuality Studies Sean Massey, Western Carolina University Assistant Professor of History Julia Haager MA ’15, PhD ’22, and Weill Cornell Medicine Associate Professor of Social Work Sarah Young, “‘You Folks Are the Ones That Are Going to Carry On’: Conducting Cross-Generational Oral Histories About the HIV/AIDS Crisis” recently appeared in The Oral History Review. A second article, co-authored by Adrian, Massey, Haager, and Eden Lowinger ’23, MSW ’25, is forthcoming in the American Journal of Public Health.

For the project, a team of mostly undergraduates — led by Massey and Haager— interviewed 120 former GMHC volunteers, gaining insight into the organization’s work at the height of the AIDS crisis in the 1980s. Formed in 1982 by five gay men in playwright Larry Kramer’s New York City apartment, the organization provided care, advocacy and support to a community that was largely feared and shunned.

“The government wasn’t doing anything, and health and social services weren’t prepared to deal with this,” said Massey, who volunteered with GMHC with his husband during the period. “People were being kicked out of their families and their apartments, disowned, fired from their jobs, and nobody was helping.”

As the epidemic expanded, so did the diversity of people affected by it. Once seen as a disease that solely affected gay, white men — the reality is far more complex — HIV was increasingly impacting heterosexuals, women, people of color, children and people who use or have used intravenous drugs. GMHC adapted to the shifting realities, but not without tension or struggle, Massey said.

A key component of the organization’s work was its buddy teams, which functioned as case managers, homecare attendants, advocates and confidants to individuals with HIV. Overall, the organization’s volunteers weren’t social workers or public health professionals, but queer people and their allies responding to an emerging crisis in their community, Adrian reflected.

“They did powerful, innovative and unprecedented things. They created materials that promoted sexual health, and were destigmatizing and celebrated queer identity,” Adrian said. “They created cutting-edge systems of peer care and peer support. They engaged in policy change and legal support for people facing discrimination — most of the time without a background in any sort of professional care or public health field.”

The process

Massey and his husband stayed involved with GMHC for a decade, first as volunteers and then as employees, until their life and work took them away from the Big Apple. Around five years ago, they discovered boxes of GMHC documents and informational materials while clearing out their garage.

“I knew we couldn’t throw that stuff away,” Massey said.

 He discovered that GMHC had donated their administrative files to the New York Public Library in the mid-90s and reached out. Perusing the GMHC archives sparked another idea: writing a history of those transformational years at the organization, which saw the expansion of its mission to a broader public.

A social psychologist, Massey reached out to the History Department for expertise. The department connected him with Haager, whose research focuses on 20^th century public health and eugenics.

Reviewing the documents in the lab, Haager suggested interviewing the people named in them, if they were still available. Together, they laid the groundwork for the oral history project, drawing in undergraduate students from the Human Sexualities Lab.

The interviews, conducted on Zoom, took place during the pandemic, and subjects were sent the questions ahead of time. The number of interviews snowballed — a dozen became 80, then 90 and eventually around 120. Typical oral history projects, on the other hand, involve maybe 40 interviews at most, said Haager, now an assistant professor of history at Western Carolina University.

“We broke rules that needed to be broken,” Haager said.

A typical oral history project is conducted one-on-one, although a historian may interview a group of subjects at one time. In the GMHC project, the dynamic was reversed with a group of interviewers — mostly undergraduates — talking with a single subject. This worked surprisingly well, likely because of the intergenerational nature of the connection.

Behind the scenes, the senior researchers used Google Chat to guide the student team during the interviews, instilling confidence, remembered Young, a former faculty member in the Human Sexualities Lab. 

“This was a unique model that people could learn from in terms of how to conduct these kinds of interviews, and also how to train emerging scholars,” Young said.

Unlike traditional historians, the interview teams took time to process the emotional weight of what they heard, preserving their own well-being so they could be fully present for their subjects. Collaboration and self-care are strategies that historians may do well to adopt, Haager reflected.

“People were sharing things and saying to us over and over again: ‘I haven’t talked about this in 30 years. Thank you for giving me a place to talk about it,’” Haager recounted.

“They were great storytellers,” Massey added. “The story wasn’t just about loss, but about meaning: how they got through it, how important the work was and what they learned from it.”

Students were also involved in compiling material history. It turns out that many of the interview subjects, like Massey, had boxes of GMHC material in their homes. Boxes soon lined the wall of Massey’s office with meeting minutes, safer-sex pamphlets, training resources, newsletters, magazines, buttons, t-shirts and more.

Undergraduates central to both the oral history project and the cataloguing work include Adrian, Lowinger, Sarah Morea ’22, Dan Pergel ’23 and Claire Goldstein ’24.

GMHC had donated their administrative files to the New York Public Library in the mid-90s; the library agreed to add these additional materials to their collection, along with the recorded video interviews with former GMHC staff and volunteers. The collection is now being catalogued and should be open to the public by the spring.

As a social worker with a background in community organizing, Young was struck by the solidarity shown by the gay community of that time.

“There’s a metaphor of building a bike while riding it. It’s a perfect metaphor for this project because these were people whose partners, friends, lovers and community members were dying a terrible death. In the face of that, how do we try to make lives better for people?” Young said. “The archive speaks to that.”

The impact

A refrain emerged, repeated across each interview: working at GMHC was “the most important thing I ever did.” Massey and Adrian are turning the project into a book, and that phrase is the working title.

“They were young when they did this work, in their 20s and 30s,” Massey said. “They all left at different times for different reasons, but to a person, what they ended up doing in their lives was undeniably tied to this experience they had in their youth working for this organization. 

Some went into social work or public health; others drew on their fundraising or graphic design experience at GMHC to pursue careers in those areas. Massey’s own career trajectory and outlook were shaped by his experience there, he acknowledged.

Through the oral history project, GMHC is still shaping careers. The project gave Haager the opportunity to explore the ways in which she approaches her discipline, and she has since shifted her focus to digital public history, she said.

A Women, Gender and Sexuality major as an undergrad, Adrian’s involvement in the project led him to complete his master’s in social work. Today, he is the assistant director of the Program for Research on Youth Development and Engagement (PRYDE) at Cornell University’s Bronfenbrenner Center for Translational Research.

“I want to be part of a generation that eliminates the HIV epidemic,” he explained. “Hearing these stories shaped that desire. I feel very fortunate to be part of a generation of queer people who aren’t living through this kind of crisis, and I want to honor the people who responded to this horrible health emergency by being part of the change.”

The project also played an important role in bridging generational divides. Even LGBTQ students are unaware of the AIDS epidemic’s history and its impact on the gay community, Massey said.

Older generations of queer people may see the younger generation as standoffish or uninterested in this history, while younger people may see the older generation as no longer relevant, Adrian reflected. This tension sometimes came up implicitly in the interview space; conversation helped dispel it.

“It’s a lesson for my generation and future generations of queer people: How our community is able to stand up and say no when we’re faced with oppression and health disparities,” Adrian said. “How queer people can rally around each other and promote their own health and well-being.”