From one of the warriors who forced our complacent government to confront the AIDS crisis
Boy with the Bullhorn is a treasure for every generation, written with personal wit and charm, yet far-ranging enough to inspire anyone who must navigate a hostile political environment. Goldberg has personalized a richly detailed resource for activists today, scholars of medical history, and students of social movements. Rare is the memoir that includes a 91-page index and 32 pages of endnotes, but Goldberg has managed to incorporate these tools while engaging the reader with his deeply personal story.
During the years the boy was deploying his bullhorn, half a million Americans died of AIDS.
During the years the boy was deploying his bullhorn, half a million Americans died of AIDS. Since those years, increasingly sophisticated antiretroviral drugs have revolutionized the treatment and prevention of the disease. But nothing has revolutionized the right-wing abuse of the LGBTQ community, and we have much to learn from this account.
“You hate us,” Larry Kramer famously wrote, addressing the nation. “And sadly, we let you.” Widely recognized as the principal founder of ACT UP, he frequently called AIDS a “genocide.” In Ron Goldberg’s account, Kramer emerges as a towering hero and an unpredictable troublemaker who “screamed it was time for gay men to grow up, start organizing politically, and stop thinking with our cocks.”
Goldberg reminds us of everything that was— and is— at stake.
Goldberg reminds us of everything that was— and is— at stake. President Reagan seriously called for mandatory HIV testing of all high-risk groups. Other U.S. officials advocated tattooing anyone who tested positive in prominent locations on the body. Goldberg’s passionate story, told with clinical precision, recalls those years of heartache and terror, the hopeless rage at a government that, by 1988, had done nothing to prevent 46,000 deaths, while it considered a proposal to quarantine HIV-positive individuals in “camps.”
ACT UP—the AIDS Coalition to Unleash Power—certainly lived up to its name. For those of us watching our friends die, it’s easy to remember the group as an aggressive, rage-driven movement torn by internal conflicts. ACT UP demanded public attention by shutting down bridges, parading on a New York Pride float built to resemble a concentration camp, and pissing off a lot of political enemies and even many mainstream allies. On election eve in 1992, ACT UP members carried a dead friend’s open casket through New York City streets and delivered his corpse to then-President Bush’s campaign headquarters. This “political funeral” was a big story in the national press, and some members credited it with Bill Clinton’s election the following day.
The book describes how a young man begged the panelists at a major conference to speed up the process and bypass the five-year FDA protocols because he wouldn’t live long enough to benefit from the standard drug-testing schedule
But less of a headline-grabber was how ACT UP persuaded the medical establishment to pay attention to the group’s thoroughly researched proposal for a coordinated, nationwide response to the epidemic. Goldberg writes of activists who crashed professional presentations led by ill-informed “medical experts” who were advising the Food and Drug Administration concerning drug trials. The book describes how a young man begged the panelists at a major conference to speed up the process and bypass the five-year FDA protocols because he wouldn’t live long enough to benefit from the standard drug-testing schedule. That young man’s knowledge was power—the power to turn the tide of death, and he is still alive today. In private interviews, physicians and bureaucrats acknowledged that the well-informed activists had formulated a more workable plan than the government had devised. Anthony Fauci—yes, that Anthony Fauci, who, 40-plus years later, has recently managed the U.S. reaction to COVID-19—“ping-ponged between friend and foe, protecting his researchers, pacifying activists, and placating his bosses in the White House.” Goldberg recalls, “Listening to the public testimony” at an AIDS Commission hearing, “it became shockingly clear that we… really were the experts… If I knew more than the people in charge, we were in real trouble.” In 1989, an ACT UP member, Jim Eigo, was the first ACT UP representative, and not the last, to be included on an official scientific panel.
During the early years of AIDS, throughout the Reagan administration, from the first “Gay Cancer” cases in 1981 until 1988, the AIDS community was desperate to persuade or force the U.S. government to treat the waves of death seriously and deploy its tremendous resources to fund a cure—in particular, to fund the pharmaceutical industry’s efforts to develop drugs to stop AIDS. When the government finally did respond, the bureaucratic machinery required Goldberg, a young musical-theater queen turned bullhorn-wielding spokesperson, to master an understanding of the network of proliferating agencies and programs, a scramble of acronyms: AmFAR and T+D must coordinate with NIAID, while CBCT and CRI monitored ACTG’s management of the clinical trials of AZT, ddC, and ddI administered through the ATEU. One promising drug caused blindness, and other drugs promised to prevent or treat this side effect.
Little did our community anticipate, in 1989, that someday Gilead (founded in 1987, six years into the epidemic) and other pharma companies would be motivated by the private profit they expected to derive from the new generation of HIV and AIDS drugs. Gilead, today best known as the patent-owner of the PrEP drugs, posted 2022 revenues of $27.28 billion.
With a kick, the book occasionally reminds us that it is a memoir. An ACT UP member named David, whom the reader has gotten to know and respect, was dying at age 32. David asked Goldberg a favor—“Would I be willing to write his obituary? The favor was really a gift. It was his way of acknowledging the importance of our relationship.” Working full-time as a legal secretary, Goldberg spent his evenings going from hospital to hospital to visit with dying friends, attending ACT UP meetings, and creating a home with his boyfriend, Joe, whom he had met in ACT UP. Together he and Joe spent many of their weekends attending funerals.
Goldberg’s contemporaries remember LGBTQ newspapers that published issues containing not a single news article, arts review, or personals ad, not even a commercial advertisement, because the pages were filled entirely with obituaries, each carrying a thumbnail photo of a dead neighbor or friend.
Boy with the Bullhorn is full of essential reminders lest we become complacent…
Boy with the Bullhorn is full of essential reminders lest we become complacent: After the squadrons of gay men in ACT UP seized the government’s attention, the official definition of “AIDS” ignored the particular symptoms women are subject to. By refusing to acknowledge the medical fact that women with HIV are particularly susceptible to cervical cancer, the Centers for Disease Control saved the government money on Social Security disability payments. ACT UP raised the money to run an ad in the New York Times, headed “Women Don’t Get AIDS. They Just Die From It.” And even today, Goldberg points out, much of the world is still in crisis.
In an AIDS memoir, a happy ending is as unusual as endnotes and an index. We get to see a 1991 photo of Ron Goldberg with Joe Chiplock beside a quiet caption noting that he and Joe did not expect to be living as a couple more than thirty years later. But they are a couple, and this reader wishes Goldberg had included an updated photo of himself with Joe.
Boy With The Bullhorn has won notable awards and was a finalist for a Lammy this year. The title hints at a lighthearted account written by a man who was once a silly boy. Goldberg certainly writes with a personal and sometimes humorous touch, and the cover photo of him leading a chant through his megaphone is adorable. He is modest about his own involvement. But he is and was anything but silly, and his contribution to turning the tide of AIDS in the U.S. and training a new generation of activists is profound.