Originally posted on Vancouver Sun
Heroes, Heartbreak & Hope: How AIDS made us better
The mysterious deaths of young gay men set off a wave of fear and loathing in Metro that took dedicated medical professionals and years of public education to curb.
FIRST OF TWO PARTS By Denise Ryan
“There were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.”— Mark King
The leak was coming from the apartment above.
Mark Minogue, 27, was found by the building manager lying face down on the kitchen floor.
Water flowed from the open taps, over the edges of the sink, spilled across the counter and seeped through the floor.
The manager called an ambulance.
At 5:35 a.m., Minogue, the young insurance underwriter who lay in the pooled water, was declared dead at St. Paul’s Hospital.
The typewritten coroner’s report noted an absence of violence or evidence of foul play. The report also noted the presence in Mark’s lungs of “an overwhelming Pneumocystis carinii pneumonia.”
And another detail. The deceased had recently travelled from San Francisco.
Other details were not known.
How long had he been lying on the floor of his kitchen, alone, labouring to breathe, while the water dripped and soaked through to the kitchen below?
Why had he not called for help?
There was another question, almost too hard to ask, from his father in Petaluma, Calif., where Mark’s body would be returned for burial.
A question about Mark. Vancouver Sun reporter Rick Ouston had reached Mark’s father, Walter Minogue, in California. “Is it true what they say?” Mark’s father asked, referring to another note in the coroner’s report. Was his son homosexual?
“I had to say … I had to say,” Ouston pauses. “I had to say, I didn’t know.”
Ouston still remembers how difficult that conversation was and how he argued with a late-night headline writer not to use the term that had trickled up from the United States: gay plague.
He had no idea how big the story would become but that day, well before there was any light on an emerging illness, he was confronted by the shadows that would shape the epidemic, influence its outcomes and ultimately drive social change: stigma, discrimination and homophobia.
Thirty years have passed since the spring of 1983 when Mark Minogue’s death made the front page of The Vancouver Sun.
In three decades, more than 70 million people across the globe have become infected with HIV and 35 million have died. Much of the burden of the pandemic has shifted to sub-Saharan Africa and outcomes, at least in the Western world, have been profoundly transformed by anti-retroviral therapies.
In spite of these shifts, or perhaps because of them, AIDS is coming out of the closet. Again.
As recent good news stories, like the “Mississippi baby” who was functionally cured through anti-retroviral treatment raise hopes of a cure, there is a growing movement to recollect the story that haunted one generation and defined another, to collect and uncover the histories that were lost, buried or just too painful to remember.
In San Francisco, survivors are forming groups to deal with the post-traumatic stress disorder that is finally being recognized among those, whether HIV positive or not, who were there in the early years of AIDS when death, fear and despair were unrelenting.
Alexis Shotwell, an associate professor at Carleton University is doing a five-year project to gather stories of AIDS activists in Canada.
Shotwell says many of her students today, born in the 1990s, “have no idea what happened.”
But in this buried history lie valuable lessons. “These people built the future that we live in and, when we remember their work building our present, it helps us to think about what kind of future we might build.”
Shotwell can only speculate about the timing of this emerging retrospection. Why now?
“Many of the people that lived through these years are in their 50s and 60s. They could be people who never believed they would live long enough to have a history. Or it could be that it takes 25 or 30 years just to be able to talk about it because it’s so sad.”
From the painful decades of loss, however, there is much to be inspired by, and much to learn.
In Vancouver, the actions of hundreds of ordinary men and women were nothing short of heroic.
The pandemic has touched thousands of lives in Vancouver, but it also shaped the growth of our city, influencing change in workplace discrimination, public health policy, access to drugs and outreach in marginalized communities.
From the beginning, gay men, positive or not, courageously came out and became unexpected activists; nurses, friends and caregivers put aside their own fears, ministered to their patients and friends, community members created grassroots organizations that became models for other cities, politicians stood up against discrimination and calls for quarantines, doctors lobbied and schemed so drugs would be made available.
At a time when hysteria and fear overshadowed rational dialogue, St. Paul’s would become an international leader and a handful of individuals in Vancouver would exemplify the best of the human spirit. It is a story worth telling, of ordinary people that became extraordinary heroes, a story in which Vancouver, in one of the darkest moments of the last century, defined itself as a place of character, courage and compassion.
Gordon Price, one of the founders of the group AIDS Vancouver, had come to Vancouver from Victoria in the mid-70s, with his lover.
“It was a magic moment,” he recalls. “There was this incredible gay shift to Western Canada. You could show up, find an apartment and a job in the service industries that were emerging, and a beach, cruising trails, bars, clubs, restaurants, transit. It was ideal.”
Vancouver’s West End was welcoming, tolerant. Here, there was no defining moment of oppression to bind the gay community — no equivalent of New York’s Stonewall riots or Toronto’s bathhouse raids — but a city, Price says, that was “fragrant with the flowering of gay culture in a sympathetic, fertile way.”
Price recalls, with wonder, when he first came to the city seeing a baseball game in a West End Park. “It was the gays versus the cops.”
“It was a golden age within the West End. There was a new identity of what it meant to be a gay man. You had a sense of self, confidence, beauty, exuberance, health.”
Price recalls a vibrant culture, bars like the Shaggy Horse, the Gandydancer and Aces and tea dances at the West End community centre.
“We were dancing on the edge, and the music was fabulous.” Although he had a sense that golden moment wouldn’t last, Price says, “I didn’t expect it would come to an end so brutally, so tragically.”
Price subscribed to the New York Native, a gay publication that had been reporting on the emergence of a mysterious illness affecting gay men. At first Price says, “we felt, typically Canadian, that it was something happening outside our boundaries.”
One man didn’t. His name was Ron Alexander.
Alexander, a former figure skater was “big, gorgeous and muscular,” Price recalls, “well travelled in the circles where youth and beauty and sexuality were key commodities.”
Alexander had seen first-hand the devastation that was already emerging in New York and San Francisco. “He said, ‘Why aren’t we paying attention to what is going on?’”
West End doctor Brian Willoughby had already been talking with U.S. experts about the mystery disease.
An ad hoc group that would later become AIDS Vancouver held a public meeting at the West End Community Centre. “It was very Judy Garland, Mickey Rooney, let’s put on a show,” says Price.
Price contacted Paul Popham, a co-founder of Gay Men’s Health Crisis in New York. Popham flew up to Vancouver, paying his own way, to address the public.“We wondered if anyone would show up. It was jammed. Standing room only,” Price recalls.
Present, and vocal, at the meeting was Gaetan Dugas, a Canadian flight attendant who would later be outed as “Patient Zero” by Randy Shilts in his book And The Band Played On.
Although the Shilts’s portrayal of Dugas as an “AIDS Mary” would later be questioned by epidemiologists and discredited by his own editor, Dugas would hold a significant place in the public imagination as the epidemic’s “dark angel.”
Previously unseen footage from that first community meeting is included in AIDS Vancouver’s 30/30 project.
In a segment dedicated to Popham and Dugas the voices of those two men, who would soon die of AIDS-related illnesses, reveal lines of division early in the struggle: defiance and superstition on one hand, educated guesses and caution on the other.
Dugas, unknown to most at the meeting, had already been identified as infected and interviewed by the U.S. Centers for Disease Control in Atlanta.
He took over the microphone with aggressive questions that touched on some of the most inflammatory issues the epidemic would provoke: discrimination and fear of people with AIDS.
Although Dugas doesn’t say it explicitly, it’s hard not to wonder if he raised those issues because he had already experienced them himself.
Panel members deftly steered toward the subject of personal responsibility and Popham issued a call to arms, urging the community to organize on its own behalf.
“It will save lives,” Popham said.
The cultural moment in Vancouver that Gordon Price describes as “perhaps the greatest optimistic moment of our lives” had changed almost instantaneously.
Michael Welsh, 65, was one of the many who answered Popham’s call to action — and one of a handful who has lived to remember.
Welsh was at that first public forum. At the time, he was a nurse at St. Paul’s hospital.
“There were a lot of frightened people,” he recalls.
Welsh volunteered for AIDS Vancouver, then joined the staff as their support program co-ordinator, a position he held from 1985 through 1989.
Welsh and a small army of volunteers saw new needs arising everywhere. Funeral homes wouldn’t touch the dead. Well, then, who would?
Patients needed home visits, meals, help with applying for social assistance, counselling, and legal aid.
The AIDS hotline was in his home. He answered whether it rang during dinner or the middle of the night. He talked panicked strangers through the most intimate details of the sex they had had the night before, what they did, what the risk might be, and struggled to calm them.
Little was known about the disease and the numbers being diagnosed were increasing at a terrifying rate.
He recalls the anxiety of callers who knew that a diagnosis would force them out of the closet.
This was a contagious disease that killed and killed fast, an illness whose ravages were cruelly visible: opportunistic infections, Kaposi’s lesions, blindness.
Welsh was instrumental in small and large community efforts to raise awareness and commemorate the dying, from three cherry trees planted in Coal Harbour, to the first candlelight vigil.
In 1989, he stepped out of the maelstrom, quit nursing and immersed himself in other projects: travel, dinners with friends, a new relationship. Life.
Welsh packed up his mementoes, the boxes of AIDS Vancouver meeting minutes, his Rolodex. “I couldn’t deal with it anymore,” he said. “I tried to put it away.”
Recently, after watching a documentary on the AIDS years, the Pandora’s box of memory and emotion was wrenched open.
He knew it was time to unpack, literally and figuratively, everything he had put away 20 years before.
“When I opened those boxes, I began to experience so much of the tension and anxiety and stress of that period again.”
The process has also been cathartic.
“Part of the spiritual aspect of life,” Welsh believes, “is to review what you’ve experienced and understand it, to stop and ask what did that mean and what have I learned from it?”
Remembering has helped him make sense of the tragedy, unpack its hidden riches and finally address the question so many survivors struggle with: “Why am I still here?”
In a binder, Welsh has carefully arranged the fragments and fading snatches of the lives whose spirits he still holds in his hands. Photos, handwritten notes, phone numbers, obituaries. Talismans.
“I carry them with me,” he said. “I’m still here, so I can be loyal to these people. I can remember all the family members, all the volunteers, the support groups and nurses and social workers.”
When he opens the binder, emotion flickers and his voice wavers.
“There was one in particular, a young AIDS patient,” he recalls. A young man close enough to death to see the life he had lived wholly, without reservation or jadedness, evaporate, become as weightless and invisible as he was. “His biggest fear was that after his death, he would be forgotten,” Welsh says softly. His voice grows stronger, his face lit by another life: “I have never forgotten him.”
The role of St. Paul’s Hospital, which literally embraced AIDS patients while other hospitals turned them away, was critical. St. Paul’s became the centre of the battle, in part because of its location in the heart of the West End.
Early in the epidemic, even health practitioners succumbed to hysteria. Some Lower Mainland hospitals practised “taxi cab medicine.” Afraid to treat AIDS patients, hospitals put patients in cabs and sent them to St. Paul’s.
Some hospital workers slid trays of food through doorways because they were afraid to enter the rooms of patients.
Irene Goldstone had started at St. Paul’s in 1982 as director of nursing and soon became one of the most dedicated advocates and educators on behalf of AIDS patients.
“Some of our first patients were our own staff,” says Goldstone, who is assembling a memoir of that period. “I stopped counting at 45 deaths.”
William Booth, who facilitates a course in HIV-related issues at UBC, says Goldstone and other nurses are the era’s “unsung heroes.”
Goldstone says staff was overwhelmed at first.
“The feeling among our staff was who is going to get sick next? In the beginning, we didn’t understand transmission. We didn’t know it was a virus. We went through the phase of excessive protection which made patients feel isolated and stigmatized. It was a very difficult period.”
Goldstone hunted for information and set up in-hospital education programs to demystify the illness and lobbied for a palliative care unit that critics said she could never staff.
She knew better.
“We had fabulous nurses,” she recalls.
Some were so dedicated they would take patients home to continue caring for them when their hospital stays were over.
Behind the scenes, Goldstone joined with doctor John Ruedy, head of the department of medicine, and lobbied for funding. When the first proposal was rejected outright (because AIDS was “not a problem”), they started again. Finally in 1986, funding was granted and the AIDS care team was established.
At bedsides, staff cared not only for the patients but their families, among them the so-called “prairie moms,” mothers who came from afar to nurse their sons. Many were unable to share the diagnosis, and their own grief, with friends and family back home because of intolerance, bigotry or shame.
“We had patients who had married and had families. The wives stood by them. Conversely, there were the young men who died without families.”
Often, says Goldstone, those young men were abandoned because the families were unable to cope with children whose illness came with the dual diagnosis of “gay.”
“There must be a tremendous amount of unresolved grief in families across this country.”
From the beginning, medical health officer John Blatherwick knew he was dealing with a two-headed monster: “We were fighting two battles. One was for the respect and acceptance of gay men, and the other was the public health side.”
In the early years of the epidemic, acts of violence against gay Vancouverites increased, culminating in the bombings of the Little Sisters book store in the city’s West End.
The problem wasn’t just a virus, says Blatherwick, “it was stigma and fear.”
Blatherwick looked to San Francisco as a model: diverse and creative community organizations working closely with health care providers and the city.
When he went to mayor Gordon Campbell to ask for a task force like one San Francisco had, Campbell wanted to chair it.
“We were able to do a lot of things in this town because of him,” Blatherwick says. “He brought people in from the gay community, not just the medical establishment.”
By 1987, the same year that the Vander Zalm government introduced Bill 34, an amendment to the Health Act that would allow the quarantining of AIDS patients, Campbell’s task force drew up a landmark policy on AIDS that included disciplinary action against any city employee that discriminated against a person with the disease.
It sent a message.
Through the media, Blatherwick hammered another message, about safe sex, and exactly how the virus could be transmitted, even if it meant talking about stuff that made a lot of people uncomfortable.
“Everybody kept talking about ‘exchange of bodily fluids,’” says Blatherwick, “but no one knew what that meant.” He once used the term “anal intercourse” 11 times in the space of a few minutes on CKNW.
“My wife says my tombstone will read RIP John, the man who brought anal intercourse to the public.”
Accurate information was key: the myth of the contagious kiss and “the waiter’s thumb in your soup” had to be dispelled.
“AIDS was fought on the front pages of newspapers, on TV that gave us a platform, on radio to get the message out.”
A young doctor named Peter Jepson-Young would practice medicine in a whole new way when his illness advanced to the point that he could no longer treat patients. Through the televised Dr. Peter Diaries he outed himself and demystified the illness for the public.
Taking the decision to come out publicly wasn’t easy.
“Our son Peter had just completed his medical internship and returned home,” recalls his mother, Shirley Young. “A couple of months later he went into hospital, he was on life support and the diagnosis was AIDS. That’s when my husband and I found out he was gay.”
At that time, says Young, “there was no question that it was a life sentence. We knew we were going to lose him, and lose him fairly quickly. It was devastating.”
Young struggled with the discovery that her son was gay.
As her son lay desperately ill, Young followed the news story of the Ray brothers, three hemophiliac children in the United States whose house was burned down by AIDS vigilantes.
“I thought if people would treat children that way, how would they treat Peter?”
The family decided to keep the illness a secret.
“For four years, Peter’s medical condition was private,” says Young.
When Dr. Peter decided to go on television to talk about having AIDS, “we lost it,” she recalls.
Peter was losing his vision, he was vulnerable. “He said if I can help one person, it’s worth it.”
For their son, the decision to go public was a return to the sense of purpose that had been snatched away with his diagnosis. It was a way of practicing medicine.
The whole family would have to come out of the closet.
“That’s when my healing started,” Young says. She wrote letters to their friends, and met privately with co-workers. “I started out by saying our family was in crisis. Our son has AIDS. He’s lost his vision. He’s going on TV to talk about it.”
She realized, as people stepped forward to support the family, “the most difficult part of the journey was keeping that secret. For Peter as well.”
Peter did 111 televised diaries before his death. The ease, humour and insight with which he chatted about his experiences gave the disease a new face.
The public video diaries became one of the most empowering parts of his own healing process, he said, coming out as a gay man, and a man with AIDS. He shared his journey from the early days when he and the disease were closeted: admitting he peeled the labels off his AZT bottles when he disposed of them, and suggested putting gay marriage on the public agenda — something, he believed was necessary, as the partners of AIDS patients were often blocked from their bedsides by other family members because “longtime companions” had no legal standing as next of kin.
Young recalls the fear she felt when her son was first diagnosed, and the gift he gave by opening up when AIDS deaths were often shrouded, announced as “cancer” or “long-term illness.”
“If he hadn’t done the diaries, we might not have admitted it. We know a lot of people who lost their children to AIDS and they have never admitted it. Isn’t that sad?”
Shortly before his death in 1992 at age 35, Dr. Peter established the Dr. Peter AIDS Foundation. It treats high-needs HIV-infected patients in residence and as out-patients.
Each Wednesday, Young helps in the kitchen, making toast and sharing hugs with patients in the sunlit dining room of the Dr. Peter Centre at the corner of Comox and Thurlow.
She stands on the front steps of the multimillion dollar complex, where her son’s words are etched: “The energy that is me will not be lost.”
From here she can see the bench behind St. Paul’s where she wept in anguish as her son lay struggling to breathe in a hospital bed, and she marvels at what she could not have foreseen.
“From all of that suffering, all of this good would come.”