The first decade of the AIDS epidemic in Washington was a time of intense debate, uncertainty, and social change. Initially most cases and resources were focused within King County, where the state's first recorded case was reported in Seattle in 1982. AIDS wasn't identified in Snohomish County until 1984, and the county continued to trail slowly but inexorably behind the curve in case numbers. Efforts to educate the public and put preventative measures in place were generally considered to be successful, but Snohomish County consistently lacked sufficient resources to provide medical care and home care for AIDS patients. By 1990, 96 county residents had been diagnosed with AIDS, and most of them had died. In Part 1, the AIDS crisis deepens.
Debate on School Policies
In early March 1986, the Mukilteo School District began to discuss whether it needed specific policies in place for students with AIDS. “If a student with AIDS were to show up tomorrow for classes in the Mukilteo School District the first thing the district would do is panic, two board members said ... then, according to board president David Beste, the most up-to-date medical evidence showing that AIDS has not been spread through casual contact would be discussed at an emergency board meeting and the child would probably be admitted for classes" ("What If ..."). In response one PTA member expressed his concerns: "But to say there is no evidence does not satisfy the burden of proof ... what I would like them to tell me is it’s impossible. (If scientists cannot) I would be in a position of not having them (students with AIDS) in the school district" ("What If ...").
At the time only a handful of districts in the region had formally addressed the issue. Issaquah had a policy in place allowing students with AIDS to fully participate in classes and activities unless the students “lack control of their bodily secretions, display unusual behavior such as biting, or have other medical conditions, such as uncoverable, oozing lesions" ("What If ..."). Everett and Edmonds expected to have their policies in draft form within the coming months.
By June 1986 Edmonds School District had clarified that it had put in place procedures for working with students and employees if they contracted AIDS but hadn’t adopted a formal policy. The focus of these procedures would be on providing a safe, appropriate, and confidential environment for the student to learn; it was stressed that due to the way that AIDS was transmitted there was a low risk that these procedures would be implemented. A panel including the student’s parents, doctors, school principal, the student’s teachers, the teachers' representatives, school counselor, a district psychologist, and a doctor who was an AIDS expert would all be involved in guiding the process. In July the Snohomish School District opted to build into existing communicable disease policies rather than adopting a separate AIDS policy because it viewed such a step as being too controversial. In August the Everett School District passed a policy modeled on the one in Issaquah.
School Curriculum
Early in the epidemic there was no requirement to teach about AIDS in the classroom. From a school perspective, it was a nightmare cocktail of taboo subjects, combining sex, sexuality, and death. A deadly pandemic complicated by personal feelings about morality when sticking to science and facts could save lives. In November 1986, the Everett Daily Herald interviewed Mukilteo teacher Roy Mainger, one of the school district’s first educators to openly discuss the topic of AIDS in the classroom. Mainger was spurred to action through personal experience; his father had received AIDS-contaminated blood in a transfusion shortly before dying from his original ailments. Though the transfusion hadn’t caused his father’s death, it was a wake-up call for him about how AIDS could impact anyone. “For the last five years, there’s been a paranoia (among educators). It was a sexually related thing that we don’t talk about,” Mainger said. “If you talk about the disease, does that mean you have some sympathy for prostitutes, drug dealers, or homosexuals?” ("Facts On AIDS ...").
His method of choice for teaching was to show the Red Cross film titled Beyond Fear, which discussed community reactions to AIDS, its effects on public policy, the insurance industry, individual patients, and their families. In Mukilteo and Everett districts the topic was only discussed when students or teachers raised it and was not part of any coordinated curriculum. In Edmonds and Northshore school officials encouraged health teachers to discuss AIDS with their students but there was no set policy.
Fall 1987 saw Snohomish County school districts beginning to grapple with the topic of AIDS curriculum in earnest. No longer was there a question of whether AIDS should be discussed, but rather at what age the discussion should begin, who should be leading it, and what all should be included. One biology teacher at Mukilteo School District lamented that she could talk about what she knew about the nature of the disease, how it spread, and how the illness itself manifested, but that she could not mention contraception; that would be something for the health teacher to cover. Mukilteo curriculum director Dr. Elaine Bilbao told The Seattle Times it was urgent to adopt an interim AIDS curriculum while things were worked out. Experts now believed that 21 percent of AIDS cases affected those between the ages of 20 and 29. With a five-to-seven-year incubation period, that meant that behaviors leading to the spread of AIDS were occurring at ages 17 to 23.
From the parental side of the debate, some were concerned there was not enough conversation about abstinence. Some wished that curriculum had begun years ago. Some believed that the contagious nature of AIDS was being understated. Some were worried that the educational materials were going to be more graphic in nature but were relieved to see they were not. Most proposed policies being discussed had a provision that any parent wanting to opt out needed to first review the course materials before removing their child. In the end, Governor Gardner’s 1988 AIDS bill added some urgency to the matter. AIDS education for grades 5-12 was made mandatory and advised that it should be made available in colleges and trade schools. While some districts would continue to debate creating their own curricula, most opted to adopt the one developed by the State Superintendent of Public Instruction, which was in place for the 1989 school year.
Volunteerism Changing Lives
A major and persistent problem was the shortfall in assistance and support for AIDS patients. While there wasn’t much that could be done to solve the gap in available doctors and nursing facilities in Snohomish County, volunteers could and did step in to address the need for food, money, rides, companionship, and other means of support. There were local initiatives, always started by members of the LGBTQ+ community, to support and uplift their suffering loved ones. Fundraising was an important tool for helping those who were no longer able to care for themselves. Local tavern owners Grant Gibson and Bruce Brown ran the best-known gay bar in Everett. The location was never named in mainstream news sources to protect the clientele, but the Stage Stop Tavern at 3021 Rucker Avenue was frequently advertised in the Seattle Gay News and LGBTQ+ newsletters.
Gibson was a proactive participant in Snohomish County’s efforts to combat AIDS. He was an active member of the Snohomish County AIDS Task Force and requested AIDS testing at his tavern as soon as he could. He hosted AIDS education nights and allowed literature to be placed. The Stage Stop was a constant venue for fundraisers, auctions, drag shows, food basket packing nights, and all kinds of other events to raise money and gather resources for those suffering from AIDS. “I’ve lost friends, people I’ve had in my home, and they’re gone for no reason. Just one little mistake. Totally innocent," Gibson said. “Sadly it happens. They get AIDS and their family deserts them and their friends desert them. They get abandoned. People don’t want to touch them. They’re sitting in a hospital, and no one visits them. Maybe they don’t have money to buy food" ("Local Gay Community ...").
While fundraisers and mutual aid were vital means of support, nonprofit organizations were also active in Snohomish County. The first to gain traction was the M.A.K. AIDS Foundation, founded by Gary Beaman and named for his close friend, Mickey Allen Keese (1960?-1986), who was believed to have been one of the first people to die of AIDS in Snohomish County. “His only wish was that we cash his welfare check (of about $330) and start a support group for AIDS with it. He knew if he had it (AIDS), there were a lot of others who had it who could use the help" ("County Leads ..."), remembered close friend Marlene Sprague. The M.A.K. AIDS Foundation helped those in need through donations, largely from the gay community, with day-to-day expenses like rent, food, utility bills, medical bills, and transportation.
A July 1987 article interviewing Beaman about his foundation stressed that the M.A.K. AIDS Foundation wasn’t solely intended for gay people, but that so far, most donors had been gay; despite that, money would be available for anyone who needed it. In November 1987 Scott Paper Company pledged $10,000 for AIDS education in Everett. The M.A.K. AIDS Foundation was selected as the local partner to receive the donation, and the Northwest AIDS Foundation agreed to provide technical and organizational assistance as operations expanded. By 1991 the foundation had been renamed the North Puget Sound AIDS Foundation and offered testing, counseling, chore services, and case management.
Soon after the M.A.K AIDS Foundation received its grant from the Scott Paper Company, a group of Snohomish and Island County volunteers were gathered by lesbian activist Mary Ward Scott (1942-2019) to form Helpers of People with AIDS (HOPWA). Founded in February 1988 under the oversight of Everett’s Catholic Community Services branch, HOPWA began as a task-oriented service for people with AIDS but soon grew to provide much more. While the essential home tasks of cleaning, cooking, grocery shopping, frozen meal preparation and delivery, and providing car services remained vital to the needs of AIDS patients, HOPWA also began to provide childcare and therapeutic art programs for the children of patients (or the patients themselves if they wished to participate). Friendship meal gatherings were offered monthly that included patients, friends, family, caregivers, and speakers that presented on relevant topics. HOPWA also distributed informational literature and a newsletter to keep the public and stakeholders informed about AIDS and their activities.
By the time HOPWA was profiled by the Herald in 1990 it had expanded to 50 volunteers and 25 clients within the county. Volunteers were screened before being allowed to work with patients to assess their experiences with death and attitudes towards gay people and drug users. Training was rigorous for volunteers who worked with AIDS patients, and all were asked to sign an agreement to inform the group if any patient openly discussed suicide. All volunteers who worked with patients regularly met with a support group to process their experiences. For end-of-life care, overnight stays were an option for volunteers to allow friends and family some respite. Despite the connection to the Catholic Church, no religious counseling or material was included in this outreach; if those services were requested by patients a hospice pastor was brought in or the diocese was contacted to provide counsel. For those who wanted to be involved with HOPWA but were unable to commit to the rigors or strain of that level of patient interaction, there were many other opportunities for gathering supplies, funds, or simply getting out and educating the world about AIDS.
The First Decade, and 30 Years On
This article is a first pass at a topic that requires volumes of writing and research. To highlight how far society has come, consider two pieces of writing from contemporaries that were written decades apart. The first was written in 1991 by an individual whose fate is unknown. His outlook was likely not unusual for his peers, but his description of his feelings and experiences sum up his situation in ways no researcher could. Ewol Nor wrote a column titled "The Gay Nineties" for the newsletter of The Gay and Lesbian Coalition of Snohomish County from December 1990 to March 1991. His last entry in March read:
“There is a metaphor in Tolstoy’s The Death of Ivan Ilych that sticks in the mind. At the very end of his life, Ivan struggles against death until finally becoming reconciled: 'Suddenly some force struck him in the chest and side, making it still harder to breathe, and he fell through the hole and there at the bottom was light. What had happened to him was like the sensation one sometimes experiences in a railway carriage when one thinks one is going backwards while one is really going forwards and suddenly becomes aware of the real direction'
"Since almost the beginning of the AIDS crisis, gay men have had an acute sense of going backward. At first it seemed as if the worst would happen, but there was no massive backlash, no branding, no quarantine. Then came the more difficult challenge of mass death, often unnoticed and almost always misunderstood. Gay lives quietly and increasingly attained a brutalizing concentration as the number of deaths mounted. As the crisis deepens, it’s hard not to concur with one man with AIDS who I met in New York: 'How strong can we be? How much ‘empowerment’ does it take? How many support groups do I have to attend to talk about my ‘feelings’? Sometimes I feel weak and afraid, and no one can help do anything about it. I hate it when that happens, but it does.'
"Denial is still there: denial of death, of the racial and viral barriers that exist among gay men, of the costs of cathartic political activity. And with this, an avoidance of intimacy the crisis demands. At this point, perhaps, it is only fair to say that going backwards is an understatement. There is no light beneath us in this hole. The hopeful idea that a community is being forged in the face of death is untrue, not because it is beyond the capacity of gay people, but because there is nothing as isolating as one’s own extinction. There is, ultimately, no community of the dying. There are only the dying.
"If there is an occasional sense that the railway carriage is actually going forward, it is perhaps in the strengthening of the gay identity that has begun to be felt, the knowledge that a new, less ravaged generation of gay men will replace the one that is soon going to be missing, and that it will surely gain something from knowledge of the current horror. There is also the awareness that we have gained a subtle, private strength from meeting death in this way. And there is the consolation that at least one myth about gay life, held by gays and straights alike, has finally been put to rest. It is an irony of the isolating nature of death that it is also curiously universalizing. Gay men die like straight men die. Loneliness, it turns out, is not the condition of being homosexual. It is the condition of being human" (Nor, 1991).
Looking for Silver Linings
In May 2020, LGBTQ+ activist Charles Fay was contacted by the Everett Public Library Northwest Room during research into parallels between the beginnings of the COVID-19 pandemic and the beginnings of the AIDS pandemic. His response gives some insight into the changes that have occurred since the earliest days of AIDS in the 1980s:
“There is an old sweet song, Look for the Silver Lining, that comes to mind. Though on this day, it is difficult to think of our current Trump Pandemic as being positive in any way. Looking back today on the AIDS epidemic, it is possible to see silver linings there.
"AIDS was devastating to those infected and those who cared about them, and in the beginning it primarily affected gay men. No drug treatment was available, and a positive diagnosis usually resulted in death in less than a year.
"Prior to the AIDS epidemic, many folks, perhaps most folks, believed they did not know anyone who was gay. Some parents, politicians and churches were hateful to gays. But our mostly closeted gay and lesbian brothers and sisters rose to the occasion in support of those who were sickened. And in the process many of them outed themselves. Freed from that burden they became proud heroes and heroines.
"Local heroes include the man who organized and led the first Everett AIDS march to the Snohomish County courthouse. That was quite a gutsy thing to do early Everett. Also the people at the then named Underground bar who envisioned a Snohomish County AIDS Memorial, which later was placed and dedicated on the County campus.
"Most of those who were infected wanted privacy and many distrusted the health district who wanted to have their names. I remember a local Seattle Group that called itself “RESIST THE LIST” and I remember marching with the group from Capitol Hill to the Federal Courthouse building in downtown Seattle. We carried signs and shouted:
"WHATS MY STATUS? I WON’T TELL
"THE BOARD OF HEALTH CAN GO TO HELL
"I think we made the front page of the Seattle Gay News, but I don’t recall if the mainstream press paid us much attention. In retrospect the Board of Health became an ally not someone to be feared.
"In the following decades we became more visible in every state lobbying for equal rights in employment, housing, gays in the military, and other areas. The better part of a million people participated in the 1993 March on Washington D.C. in support of GLBT issues.
"Washington State approved same sex marriage by a vote of the people before the U.S. Supreme Court made it the law of the land.
"The AIDS epidemic has made our LGBTQ community more visible and we became increasingly politically active. Today we are running for public office and more of us are getting elected in every election. We are mainstream and no longer invisible, in part as a result of what happened during the AIDS epidemic.
"Stay safe,
"Charles (Fay to Labovitch 2020)”
