THE DYING SEEMED like it would never stop.
At the height of the AIDS epidemic in the early 1990s, more than 600 people a year in Washington were killed by the virus and its ravages. Most were young, gay men. Shellshocked survivors trudged from one memorial service to another, all while nursing lovers and friends and anxiously scanning their own bodies for signs of doom.
By 1996, when lifesaving drugs began to change everything, the death toll in King County alone stood at 3,276 — more than three times the number of Washingtonians killed in Vietnam. But like memories of war, memories of the plague that nearly obliterated a generation of gay men have faded for many in the decades since the disease first appeared.
“When I talk to young people about it today, it’s like ancient history,” Tom Rasmussen, the first openly gay man on Seattle’s City Council, told a recent gathering of graying AIDS veterans.
The location — a meeting room at Seattle Central College — was symbolic. On Dec. 1, 1982, frightened people crowded into the same room for the city’s first public forum on the mystery illness attacking gay men. More than 35 years later, the men and women who led the region’s battle against AIDS were there to plan a memorial to that battle and to those who were lost.
The AIDS Memorial Pathway, set to open in 2020 on the plaza of Capitol Hill’s light rail station, is just beginning to take shape. The goals are to honor those who died and to commemorate what came to be called the “Seattle model” — a uniquely collaborative approach to fighting AIDS born of grass-roots activism, a politically savvy gay community and a health department that mobilized quickly and without judgment.
Volunteers and officials created an integrated network of care that saved some lives and eased the deaths of many more until effective treatments arrived. Education campaigns pushed the boundaries of decency for the time, but helped drive down transmission rates. Seattle scientists pursued a cure and tested many of the earliest drug candidates at local clinics.
“Seattle mounted a very heroic set of responses to the epidemic,” says Phil Bereano, a memorial organizer and co-founder of the activist group Seattle ACT UP.
Health officials say the city’s early approach is still paying off in lower infection rates. King County was one of the first communities in the nation to reach the World Health Organization’s goal that 90 percent of people with HIV know their status and are getting treatment that suppresses the virus and blocks transmission.
But the disease is far from vanquished. In 2017, 161 people were diagnosed with HIV in King County, a disproportionately high number of them black men, homeless people and IV drug users.
As they recall a time many would rather forget, some of Seattle’s AIDS warriors shared their experiences in the trenches and stories of the dead, along with lessons learned that are relevant today: That in a crisis, compassion can triumph over discrimination and fear, and that, even in the face of seemingly impossible odds, individuals who stand together can make a difference.
“When you know a disaster is brewing, you do something about it.”
— George Bakan
SEATTLE SAW THE AIDS epidemic coming.
As the disease began to surface in New York and San Francisco, Seattle’s small, tight-knit gay community watched with a sense of foreboding.
“We knew we weren’t going to be spared,” recalls activist George Bakan, who dedicated himself to the cause by signing on as editor of Seattle Gay News in 1982. “When you know a disaster is brewing, you do something about it.”
The city’s gays and lesbians were already organized and enjoying newfound political clout after the resounding defeat of a 1978 initiative to roll back a ban on housing and job discrimination. Building on that base, organizations sprang up to advocate for AIDS funding, offer counseling and help sick people with household chores. Others banded together to donate blood, care for pets and distribute condoms long before President Ronald Reagan uttered the word. The “Jars in Bars” campaign collected
more than $400,000 in spare change to buy microwaves and food for the stricken.
When a Gay Pride celebration in the late 1980s honored AIDS organizations, representatives from more than 200 groups stood on the stage at the ceremony’s end.
Throughout the epidemic, Bakan’s weekly newspaper covered every scrap of news and published free ads for safe-sex campaigns.
At a time when being HIV-positive could cost victims their jobs, homes and families, SGN drew fire for publishing the first picture of a man who died from the disease. Bakan didn’t flinch, later filling page after page with the names of the dead and printing obituaries for free — sometimes 10 in a single edition.
“I felt it was time to open the door and publicly give people with AIDS an identity.”
“ … a climate of fear.”
— Tim Burak
TIM BURAK was a new volunteer at the Seattle Gay Clinic in 1981 when he first palpated a patient’s neck and found lymph nodes so swollen they felt like mumps.
After that, Burak saw men with similar swelling — an early sign of HIV infection — every time he worked.
The clinic was an all-volunteer operation established in the late 1970s as a gay-friendly alternative to the forbidding public VD clinic in the same building as the police department. As the AIDS epidemic began to grow, the clinic quickly became a hub for sharing information and brainstorming ways to help.
“None of us knew if we had this thing — or even what ‘this thing’ was. We were operating in a climate of fear.”
The clinic co-sponsored that first public forum in 1982. A few months later, it helped mobilize nearly 1,000 people to march on City Hall and demand money for AIDS services.
Seattle and King County anted up for a hotline and clinic, the first local funding outside of San Francisco.
Many of the organizations that defined Seattle’s collaborative approach to fighting the plague were dreamed up by clinic volunteers. Among them were the Seattle AIDS Support Group; the Chicken Soup Brigade; and the Northwest AIDS Foundation, which provided hands-on services to the sick and dying. Burak later joined the Seattle-King County Public Health Department’s AIDS prevention program, funded by the first of many federal and private grants won by the department.
Some of the program’s racy safe-sex messages barely squeaked past the in-house “smut committee” charged with shielding Reagan-era sensibilities. Playboy magazine took note of one, which featured a cop, a condom and the word “penis.”
Burak immersed himself in the work, which was meaningful — and helped fend off depression as he lost his partner and most of his friends. Today, he remembers them by wandering old haunts on Capitol Hill, imagining that those long-dead companions are looking out through his eyes at a world they didn’t live to see.
“I decided I might as well work on this … before I passed.”
— Dr. Bob Wood
DR. BOB WOOD had been treating AIDS patients for three years when, in 1985, he found out he was infected, too.
Wood had seen strong men waste away and die in a matter of months despite every treatment he could muster. On the worst days, he listened to requiems and wept.
Figuring he had a year or two at most, Wood accepted the job as director of the Seattle-King County Department of Public Health’s AIDS program. “I decided I might as well work on this problem full-time before I passed.”
Having a gay physician at the helm reduced the mistrust and suspicion toward government that existed in many other gay communities. The department also worked closely with the University of Washington and Harborview Medical Center to leverage their expertise and pull in funding for some of the first trials of HIV tests and experimental treatments. Health officials from around the world visited Seattle to learn how the city mounted such effective research, education and treatment programs.
Organizations coordinated care so sick people could easily access services, from counseling and financial assistance to estate planning and free massages. Seattle was still a small town with limited bureaucracy, so good ideas were quickly embraced.
One was the “Be a Star” study, which enlisted nearly 3,000 gay men to be tested and tracked for several years. Officials defused fears about privacy by allowing participants to remain anonymous in cohorts identified only by campy icons like Marilyn Monroe and Mae West.
Though the death toll didn’t start falling until the advent of effective drugs — which saved his own life — Wood says Seattle’s education push kept people from spreading the virus.
He would ask newly infected people to hold up a hand, and appointed them deputies in the battle. “I said, ‘You’ve got to help me control this infection, and that means not exposing anybody else.’ ”
“If we didn’t do it ourselves, it wasn’t going to get done.”
— Carol Sterling
WHEN CAROL STERLING, a self-described loudmouth lesbian, took over Seattle’s Chicken Soup Brigade, it had 12 clients, a handful of volunteers and almost no money. When she left in 1995, the group had its own commercial kitchen; fielded hundreds of volunteers; and raised $2 million a year through grants, Gay Bingo and dance parties featuring celebrities like Etta James.
But the mission never changed: Ease the day-to-day burden for gravely ill people by providing meals, housekeeping and transportation.
“It was so basic and simple, but if we didn’t do it ourselves, it wasn’t going to get done.”
Hysteria over how the virus spread was rampant. Some volunteers were uneasy about their potential exposure — yet they did the work anyway. They scrubbed bathtubs, vacuumed carpets, emptied cat boxes and provided companionship to people whose families and friends had turned their backs.
Among the first AIDS patients Sterling met were the closeted son of a fundamentalist preacher, a heterosexual contractor infected in Africa and a mother pregnant with her second child.
“It was clear this could happen to anybody, anytime, anywhere.”
Most clients died. For years after, a heartbroken Sterling felt she hadn’t done enough, hadn’t really helped.
Now, she looks back with wonder at the big-hearted volunteers who cared for strangers as tenderly as if they were their own brothers, mothers or children.
“Those people were filled with grace, and I got to be a part of that.”
— Phil Bereano
THE AIDS COALITION to Unleash Power made its mark nationally by storming drug companies and staging flamboyant protests to speed approval of medications. But even in Seattle, where government and advocacy groups mostly worked hand-in-hand, some situations called for activist “butt-kicking,” says Phil Bereano, co-founder of Seattle ACT UP.
“The story of HIV/AIDS, particularly in Seattle, can provide enormous inspiration to people in all kinds of situations. We faced really bad odds, and we struggled together to overcome those odds.”
When developers — including a member of the Seattle Art Museum board — opposed construction of an AIDS hospice in Seattle’s Madison Valley, ACT UP planned a major demonstration at the next opening gala. Sympathetic museum staff met with the activists to try to talk them out of it, but were shouted down. Within days, the developers dropped their challenge. ACT UP and its allies celebrated by toasting with Champagne on the museum lawn.
“It was one of the sweetest moments of my life.”
ACT UP scored another victory working quietly with the health department to make Seattle the first major U.S. city with a needle-exchange program. Meant to stem the spread of HIV among intravenous drug users, the idea was enormously controversial.
ACT UP agreed to take the heat. On a morning in 1989, the activists started handing out syringes by the stone pillars at the corner of Boren and Pike. The bold move provided political cover for the health department, which stepped in to run the program in a more regulated way.
A place to die with dignity
— Betsy Lieberman
AS THE EPIDEMIC ground into the early 1990s, someone died of AIDS in Seattle almost every day. Most died in hospitals, or at home with family and friends desperately trying to make them comfortable.
With a little funding from a Robert Wood Johnson Foundation grant, Betsy Lieberman set out to change that. She had seen the disease overwhelm the community clinic she administered at Pike Place Market, and hoped to establish the country’s first purpose-built skilled nursing facility and hospice where people with AIDS could get the best possible treatment and end their lives in dignity.
Lieberman and her team found the land in Madison Valley, and rejoiced when the developers targeted by ACT UP dropped their legal appeal. But she still had to attend endless meetings to assuage residents’ fears that patients could spread contagion by touching items in a store, or by coughing.
The first major donation — $100,000 — was funneled anonymously through the Archdiocese of Seattle. More than 5,000 donors — from Boeing and Weyerhaeuser to individuals — eventually chipped in. Virginia Mason Medical Center agreed to manage the facility after other hospitals refused.
Bailey-Boushay House, named for a leading supporter and his partner who died of AIDS, opened in 1992, as the death curve continued to climb. Half of all the people killed by the disease in King County have died there, in a setting with round-the-clock care, a greenhouse, private rooms, beautiful art and an all-encompassing sense of compassion.
Lieberman knew dozens of them.
“Whenever I’ve been there with someone who’s died, I always think: ‘This is beyond anything I ever dreamed of.’ ”
Not just a white man’s disease
— Mary Diggs-Hobson
THE REV. MARY Diggs-Hobson’s first experience with AIDS was as a volunteer chaplain at Bailey-Boushay House.
Many of the patients she ministered to, particularly gay African-American men, had been rejected by their families and churches. Diggs-Hobson grew up in the African-American faith community, and was well-versed in the common prejudices about homosexuality and sin.
But holding the hands of dying young people led her beyond mere tolerance to acceptance and sharing Jesus’ love.
“That growth, that transformation, is what really helped prepare me for my journey with my own son.”
When Reginald Diggs broke the news to his mother in 1995 that he had been living a secret life and engaging in risky sex that left him HIV-positive, they fell into each other’s arms and sobbed and prayed.
Reginald’s experience inspired mother and son to create the African Americans Reach & Teach Health Ministry. Their goal was to dispel myths about HIV and AIDS in African-American churches and to encourage compassion toward people with the virus.
“In African-American history, the church is the cornerstone; it’s the place of refuge for people in need, but it wasn’t being that for people with HIV.”
Their initial efforts were met by resistance. Pastors didn’t return phone calls. Few churches invited them in. But over the years, the organization manned countless information booths, spoke to prayer circles and gradually helped transform the perception of HIV as sinful and a white man’s disease.
“My son was out there in the trenches, on the streets, in organizations and churches, bringing awareness of HIV. Everything we were doing was because of him.”
Reginald controlled his infection with drugs. But he also suffered from a congenital kidney disease, and HIV disqualified him from a transplant. He died in 2007 at the age of 42.