In marking its 30th anniversary with a Gotham Hall gala, Gay Men’s Health Crisis, the world’s oldest AIDS services and advocacy group, reached back 19 years to honor a former executive director, Tim Sweeney, who for two decades held pivotal leadership posts in AIDS and LGBT civil rights work in New York before assuming his current role as head of the Colorado-based Gill Foundation.
The April 18 event also honored the Rudin family, who run one of the city’s leading real estate development companies, for their support of GMHC, which dates back to 1984, and Duane Reade, a unit of the Walgreens pharmacy chain, a major booster of the group’s May AIDS Walk, it largest annual fundraiser.
However, in a room filled with long-time AIDS activists, including Larry Kramer and Dr. Larry Mass, two of GMHC’s six original founders, the recognition accorded Sweeney —a humanitarian award named for the late Judith Peabody, one of the group’s most loyal donors, board members, and volunteers — proved an emotional high-point.
Sweeney was introduced by David Hansell, who formerly held senior posts at the US Department of Health and Human Services and in New York State and City government.
“There are lots of heroes,” Hansell said of leaders, staff, volunteers, and donors who have served GMHC over the past 30 years, “but none more exceptional than the man we’re about to honor.”
Sweeney left New York about a decade ago, but he remains one of the city’s best known gay leaders, and with his leadership at the Gill Foundation — the LGBT philanthropic group begun by software entrepreneur Tim Gill, who also initiated the Gill Action Fund, a top LGBT political group — his profile on the national stage, already significant from his GMHC days, has grown more prominent.
A native of Montana, Sweeney, who is 57, cut his teeth in gay activism in San Francisco shortly after college, when he worked on the successful campaign to defeat the 1978 Briggs Initiative, which would have required California to fire any public school teacher known to be gay or lesbian. That effort was led by City Supervisor Harvey Milk, and the victory in the November election that year came just weeks before his assassination.
After moving to New York, Sweeney, in 1981, joined the fledging Lambda Legal Defense and Education Fund, as it was then known, as executive director. One of the earliest LGBT advocacy groups founded to formalize the activist ferment that defeated Briggs, but lost to Anita Bryant in Dade County, Florida, in the late 1970s, Lambda soon became engulfed, as did its peer groups, in the unfolding AIDS crisis.
And Lambda took on this challenge, as well as the rest of its legal rights agenda, on a pittance by today’s standards — even for the most modest advocacy group. Sweeney recalled that the organization’s first-year budget totaled a mere $40,000 or so.
In an interview the day after the GMHC dinner, Sweeney recalled the extraordinary sense of crisis that took hold among New York City’s gay leadership as the epidemic erupted.
“We were paralyzed with fear,” he said. “We had no idea how many were infected, how it spread, or whether we ourselves were infected. Fear was driving us.”
For many straight Americans, he said, the early reports of a wave of catastrophic illness sweeping gay communities in New York and San Francisco, especially, “confirmed all their stereotypes.”
“See, they’re diseased,” Sweeney said, echoing the response some politicians and media figures voiced about the fact that the frightening new epidemic seemed to have sprung full-grown out of the gay community. He noted that calls for extreme measures — such as mandatory testing of gay men and quarantining of those infected — were not confined to the lunatic right-wing fringe. In a 1986 New York Times essay, William F. Buckley, founder of the National Review, wrote that anyone with AIDS should be tattooed to warn others of their infection.
During the first years after AIDS was identified in 1981, Sweeney and other gay and lesbian leaders feared the right wing would use the epidemic to enact draconian legislation curtailing the community’s civil liberties, or at least those of people who showed signs of illness. In the year the epidemic emerged, New York City had only three LGBT advocacy groups with paid executive directors — Lambda, what was then known as the National Gay Task Force, and SAGE. It would be another three years before the LGBT Community Center was established as an organizing home for activists. With the exception of the late Tom Stoddard, who was then working for the New York Civil Liberties Union, the community had no professional lobbying representation in Albany or at City Hall, Sweeney remembered.
Lambda took on an early leadership role in combating AIDS discrimination, responding to immediate challenges but also working with other legal experts and groups like GMHC to formulate a strategy for more comprehensive protections.
Sweeney recalled going to court to defend Dr. Joseph Sonnabend, one of the earliest doctors to tackle AIDS, against his landlord’s efforts to evict his office from ground floor space in a West Village residential coop building. As Sweeney and others arrived for a hearing, reporters trailed them into the courtroom and some bystanders who recognized them “shrunk” as they passed by, concerned that even the most casual contact could cause them to get sick.
Sonnabend prevailed in his case, something Sweeney described as “incredibly important.” The lesson, he said, was “to fight fear with facts.”
In tandem with legal experts such as Nan Hunter — now a dean at Georgetown Law School and the director of legal scholarship at the Williams Institute, an LGBT policy think tank at UCLA — Lambda, GMHC, and other AIDS advocates tackled the tough question of how to stave off discrimination against those living with AIDS. Some believed the threat facing gay men was so pervasive the effort needed to encompass the community as a whole, while others argued that protections specific to AIDS should be spelled out in law.
In the end, those working on the problem largely concluded that existing disability law provided the most promising source of case law to build a framework to defend those with AIDS. The focus on a disability approach, however, made at least some advocates uncomfortable, Sweeney said, tying public perceptions of gay men more tightly to disease.
Though disability litigation offered a roadmap, community leaders found themselves writing legislation about problems never before encountered.
“This was not something people learned about in public health school,” Sweeney said.
A key strength of the proposals that emerged was a focus on patient protections, something that was demanded loudly as the direct action group ACT UP surged onto the scene in 1987.
“The untold story of the epidemic was a legacy of innovation and creativity,” said Sweeney, who told guests at the GMHC dinner, “We literally made up treatment and policy approaches — and played incredibly smart politics.”
During those years, GMHC was filling a critical gap in the government’s response to AIDS. The agency established its ombudsman program to address discrimination and inadequate care in hospitals across the city whose critical care beds were overwhelmed by sick and dying gay men. Its buddy program provided in-home assistance to homebound people with AIDS, who often lacked the resources for professional care or experienced hostility and fear from potential care-givers.
The agency also created the first public policy department among AIDS organizations and, along with the San Francisco AIDS Foundation, became a leader in providing technical assistance to other groups around the country struggling to respond to surges in infections and illness in their own communities.
Sweeney quickly saw first-hand the outpouring of support for GMHC’s mission. He recalled a fundraiser at the Paradise Garage in SoHo, where attendees, after paying their admission, stuffed $20-bills in a can set up for donations. Just a year after its founding, the group filled Madison Square Garden — with a capacity of nearly 18,000 — for a Ringling Brothers Circus benefit. Still, the massive event was ignored by the New York Times, since roundly criticized for its meager reporting in the epidemic’s early years.
In 1986, at the age of 32, Sweeney joined GMHC as its deputy executive director and would later hold the top post until 1993. With thousands of activists making their impatience and rage known in protests on the streets nationwide, the AIDS movement — grassroots and institutional — began making significant strides. Sweeney credited Governor Mario Cuomo’s health commissioner, the late Dr. David Axelrod, for setting “an agenda based on public health” and helping to “deconstruct stereotypes” about HIV. Money for treatment, prevention, and research began flowing from Albany and City Hall, and the state formalized its efforts by founding the AIDS Institute.
If New York was slow in responding to AIDS, the federal government was essentially AWOL. According to data from ACT UP, 41,000 Americans had died of AIDS by the time President Ronald Reagan first uttered the word in 1987. US funding for the epidemic was confined to research and prevention efforts at the Centers for Disease Control and Prevention (CDC). Treatment was largely a local or private responsibility.
The year 1990, however, proved a pivotal moment for federal efforts on the epidemic. The Ryan White Emergency Comprehensive AIDS Resources Emergency (CARE) Act provided the first US dollars for treatment, and in line with the legacy of patient protections, that funding came with significant requirements for input by local community representatives in the disbursement of the money.
The Americans with Disabilities Act (ADA) was also enacted in 1990, which formalized many of the protections that legal advocates for those living with AIDS had been pressing for during the previous half-dozen years or so. Though the ADA was a landmark in disability law, New York Law School Professor Arthur Leonard, in numerous stories in these pages, has documented how federal courts on many occasions have constrained the scope of the important protections the law could provide to the HIV-infected.
Despite considerable advances by the time GMHC marked its first decade of existence, the battle against AIDS remained a steep and often discouraging climb. Sweeney recalled a service at St. John the Divine in Harlem at which the ceiling lighting was designed to represent the roughly 100,000 Americans who had died of AIDS by that time. “Rage and grief” were the predominant emotions in the audience, he said, and Larry Kramer, the GMHC co-founder who had also helped establish ACT UP in 1987, “castigated” those in attendance for not doing enough.
During his years at GMHC, Sweeney said there was “a constant cycle of death, loss, and grief” among staff members themselves.
“As the head of an organization experiencing that, I knew we had to have a process of grieving” for those lost within the agency’s own ranks. Some who had been working on AIDS for years developed mental health problems — overextending themselves, in many cases “feeling that if they just worked harder, they could save people.” Post-traumatic stress disorder became a reality among staffers, and “at times, we had to do interventions to get people to step away,” Sweeney recalled.
For years, treatment activists had searched for “miracle drugs,” but by 1993 many experts believed the effort had stalled and the prospects for more effective therapies were grim. “Despair,” Sweeney said, characterized the International AIDS Conference that convened that year in Berlin.
Sweeney left the agency in 1993, and the immediate task ahead of him was caring for his older brother Mark, facing his final year struggling against AIDS infection in New York. Mark’s doctors and others, Sweeney said, did “yeomen work” in those days, and as his brother’s primary care giver, he kept hoping Mark could “hang on just a few months more” to give time for another drug breakthrough.
By late 1995, combination anti-retroviral treatments that would change the course of AIDS for those with access to the drugs emerged, but they came too late for Mark, who died in 1994. The loss was, for Sweeney, “the single most personally devastating event in my life.”
By the time he left GMHC, Sweeney knew that access to treatment was the most important political question facing those affected by HIV. He and others aggressively lobbied Bill Clinton’s 1992 campaign on the issue, and after the new president took office, Sweeney threw himself into the effort for health care reform, organizing 14 key congressional districts across the country to build support for the administration’s bill.
When the final Senate vote that killed the effort took place, he was among those arrested at the Capitol. The chant by the crowd that day was, “Bob Dole sold his soul and insurance companies paid the toll.”
During the late 1990s, Sweeney focused his work more broadly on the LGBT agenda, serving as deputy executive director of the Empire State Pride Agenda. Assembling support in bipartisan fashion, the group was able to enact a hate crimes law in 2000, and it was under Republican Governor George Pataki that the first funding for non-AIDS LGBT health and human services was established. In recent state budgets, the annual allocations for such organizations have stood at roughly $5.25 million.
Since leaving the Pride Agenda, Sweeney has been engaged in philanthropic support of the LGBT community — first at the Evelyn & Walter Haas, Jr. Fund in San Francisco and, since 2007, as executive director of the Gill Foundation. Gill is a leading funder of AIDS efforts in Colorado, but Sweeney acknowledged he is no longer on the front lines of that work.
“I feel I’ve gone upstream on HIV prevention to get at the core issues,” he said, pointing to Gill’s efforts to encourage self-respect — and establish new community norms on issues of obesity, smoking, alcohol and drug use, and HIV prevention — among young people.
The effort to effect cultural change in the community, Sweeney said, is in line with a shift in the way LGBT advocates are waging the fight for equality.
“We’ve dropped a lot of the rights focus,” he said of efforts at Gill and other leading LGBT groups. “The victimization focus does not work to win allies Instead, the emphasis now is, ‘We share your values.’ Polling has shown that people did not think we shared their values.”
Sweeney acknowledged that HIV transmission rates among gay and bisexual men have remained stubbornly resistant to further decline after years of success toward that goal in the 1980s and ‘90s. Still, he said, the drive to build and protect self-respect among LGBT youth “will have an impact on HIV rates.”
He described his sense that attitudes among LGBT youth have shifted considerably in recent years.
“Young people today feel entitlement,” he said. “They’ll say, ‘I’m going to get married. I don’t care.’”
Sweeney foresees another major legacy the LGBT community is likely to forge — one based largely on its response to AIDS. Aging members of the community, he said, are positioned to “lead the battle for community-based systems that are culturally competent” in addressing the needs of seniors. The same concepts that worked in stanching the catastrophe of AIDS — including consumer protections, ombudsmen, and buddy programs — offer opportunities for seniors to advocate for themselves and build their own solutions.
“We’ll do it because we have to,” Sweeney predicted, “because the institutional-based system does not work.”