ACT UP: Alum author discusses activism in the age of AIDS

Ron Goldberg’s address book is, in its way, a memorial of sorts. Between 1989 and 1993, he had lost 35 people therein to AIDS.

But that doesn’t give a true accounting of how devastating the epidemic was, he told members of Associate Professor of Women, Gender and Sexuality Studies Sean Massey’s Exploring Queer Lives class. Think about those friendly acquaintances, not close enough for their own entry in the address book, but close enough for a chat on the street: another 35. The ones you wave at from afar or see at meetings, whose first names you know: another 35. The people in your neighborhood: another 35.

Some died slowly, visited by friends during a weekly circuit of New York City hospitals, often in corridors and unable to secure a room. Others died quickly, silently, simply winking out of the public eye.

“The feeling of the gay community was that since it was happening to us, no one else cared. There were these alternate universes,” remembered Goldberg, a Binghamton University theatre major who graduated in 1980. “You were losing people by the day, while everyone else was going about their business and no one seemed to care. It was very isolating in that respect.”

Goldberg returned to his alma mater Oct. 24 to do a reading from his new book Boy with a Bullhorn: A Memoir and History of ACT UP New York, followed by a conversation with Professor of Sociology Benita Roth, author of The Life and Death of ACT UP/LA. The event was sponsored by Women, Gender and Sexuality Studies, the Theatre Department, the History Department, the Q Center, the Binghamton University Alumni Association and the Southern Tier AIDS Program.

The following day, the self-described “nice gay Jewish theater queen turned AIDS activist” visited Massey’s class in the Multicultural Resource Center for a discussion of ACT UP, and the activist group’s role in confronting the AIDS crisis.

Massey had discovered that Binghamton once had an active chapter of ACT UP during the course of his research, but was only able to unearth little information about it: a few flyers, including for a candidate survey during an election year, and an announcement in a local LGBTQ newsletter called Amethyst. He ended up reaching out to Goldberg, who had joined the New York City chapter a few months after its formation and stayed active for years in the fight against AIDS in the face of an uncaring public.

An epidemic of silence

Goldberg began with a primer on the disease for students. As it destroys the immune system, the human immunodeficiency virus (HIV) opens the door to the opportunistic infections that define acquired immunodeficiency syndrome (AIDS); the latter is what ultimately kills the sufferer, Goldberg explained.

Initially, the definition of AIDS by the Centers for Disease Control and Prevention (CDC) only included those infections that typically struck gay men — leaving female AIDS patients and those who acquired the disease in other ways out of drug trials and available services. ACT UP fought to expand the definition of the disease, increase access to treatment and drug trials, lower the cost of the drug AZT and promote safe sex, as well as counter fears and prejudice related to HIV.

No test existed until 1985 and no treatments existed until AZT came on the market in 1987. Toxic at the high doses with which it was typically administered, AZT was — in its day — also the most expensive drug in history, putting it out of reach for many. Outside of big cities, most doctors didn’t know of treatments that would prevent the opportunistic infections from claiming thousands of lives.

“If you lived in New York and you had certain doctors, you could get this preventative treatment. If you were just coming into the emergency room, you were screwed,” Goldberg recounted. “Big point: Much like COVID, it wasn’t just a medical crisis; it was a political crisis.”

President Ronald Reagan didn’t utter the word “AIDS” until 1985, and he didn’t make a policy speech until two years later — by which time there were 32,000 cases and more than 18,000 people dead. Except for the occasional frightening headline, the disease went unnoticed in the mainstream press and little information was publicly available in a world before the internet.

The reason behind that neglect: vicious prejudice against LGBTQ people, who faced threats of violence, eviction and unemployment, and could be disowned by their families. The religious right considered the disease “God’s punishment for being gay,” and considered LGBTQ people “vectors of infection.” The rightwing uses the same playbook today, except they switched the term to “groomers” instead, Goldberg pointed out.

During the epidemic, funeral parlors refused to take the bodies of people who died from AIDS. Patients — not only gay men, but children who acquired the virus through blood transfusions for hemophilia — faced harassment and threats of mandatory testing, even quarantine. Famously, conservative writer William F. Buckley advocated that all HIV-positive people have their status tattooed on their body in a 1986 column published in The New York Times.

At the start of the epidemic, gay life was still largely segregated, with many lesbians and gay men clustered in cities while remaining closeted at work and to their families. The crisis forced people out of the closet and revealed the gay community to be just that: More than just sex, it consists of people who care for one another, as well as political constituents, family members, friends and employees.

“You have to tell the stories; it’s an imperative to carry and pass that on. That’s what I’m hoping to do; the book is just a tool,” Goldberg said.

Direct action

When he attended his first ACT UP meeting, Goldberg was 28 years old and pursuing a theater career, juggling his activism with auditions, rehearsals and a day job at a law firm.

The organization was dedicated to nonviolent direct action to end the AIDS crisis. These included teach-ins, rallies, marches and die-ins, including at government offices, CDC headquarters in Atlanta and in New York City’s St. Patrick Cathedral, the latter in response to the Catholic Church’s opposition to condoms and safe sex. In 1991, activists famously pulled a giant condom over North Carolina Sen. Jesse Helms’ house. In 1992, they threw ashes of friends and loved ones who had died from AIDS on the White House lawn.

While loss permeated the ACT UP community, joy was also a critical component. They danced and sang during rallies, and greeted each other with a hug and a kiss to break down the stigma both of AIDS and being queer. The Monday night meetings were also the place to be, socially.

“Activism is not a one-shot deal; it’s a campaign. And so you do this, and you get that victory, and that’ll lead you to the next piece, and that’ll lead you to the next piece,” he said. “We were getting results and that was incredible. But it was also sexy. It was fun. It was devastating. It was frustrating. It was the best time of my life and certainly the most important thing I ever did.”

Two of the friends he made in Binghamton’s Theatre Department died of the disease: Tim at the age of 34, and David at 32. The latter asked him to write his obituary, an effort that eventually developed into the book.

“I’m very conscious in my book about stopping when someone dies and saying, ‘May their memory be a blessing.’ And as the book progresses, that happens more and more,” he said. “But it’s about naming the names. It’s about honoring who they were and what they did. The blessing is for you to continue their work.”

The AIDS epidemic offered interesting points of comparison for Binghamton students, who have lived through a different epidemic: coronavirus. Goldberg noted the echoes: the urban, low-income communities hit hard early in the coronavirus epidemic still struggle with HIV today, for example. The politicization of the epidemic and the current demonization of the LGBTQ community from the rightwing also bear a startling resemblance to earlier times.

Samantha Kulik, a sophomore who plans to double major in sociology and human development, didn’t learn about ACT-UP or its work before coming to Binghamton, she said. Since then, she has researched the importance of the organization’s work.

“It was shocking to hear about how members of this community were dying all around them,” she reflected. “I appreciate the opportunity to hear what it was really like on the frontlines.”

In addition to his lecture and Massey’s class, Goldberg also spoke with students in the theatre program who will be performing the musical Rent next semester. Loosely based on Giacomo Puccini’s La Bohème, the play takes place in the 1980s in New York City’s East Village. One of the songs even includes the chant “ACT UP! Fight back! Fight AIDS!” that featured prominently in ACT UP marches and demonstrations.

ACT UP and Rent

His shared experience helped deepen students’ understanding of the world and circumstances depicted in Rent, students said.

Goldberg lived through a pivotal moment in history and was an active member of a movement that brought LGBTQ rights to the forefront, reflected Patrick Saint Ange, a senior majoring in sociology and English with a theatre minor. Still, his talk also reminded listeners that this strategic and organized collective was comprised largely of young people, who were tasked with defining a movement in addition to discovering themselves, he said.

Saint Ange, who has participated in five main stage productions so far at Binghamton, plans to audition for Rent this month. So, too, will Jared Wofse, a senior majoring in theatre and electrical engineering who is currently reading Goldberg’s book in preparation.

“I found myself not only laughing at any jokes he had, but I felt the remorse that just the mention of this topic often carries. It was a real rollercoaster listening to what he had to say, but it was a conversation I know I will never forget,” said Wofse said of Goldberg’s talk.