In those early years, gays found themselves in a fight against the unknown.
And that made the 1980s a scary time, says Barry Deeprose, a longtime AIDS activist, who recalls writing to organizers in New York City, a hotbed of AIDS activism in those early years, to obtain what little information he could about the new disease.
“Our friends and lovers and brothers were dying before our eyes. It’s not as though they were just testing positive, but they had been, as we grew to understand, been infected a long time, with no medication, and the opportunistic diseases were ravaging their bodies before they came forward,” remembers Deeprose.
At the time, there was little to no movement on the part of the medical establishment to quell the growing epidemic, he says.
“Medical practitioners were afraid. Hospitals were afraid. There would be these huge racks of gowns and gloves and booties and masks before you could even go into the room. In the early years, until the virus was discovered in 1984, we didn’t know what caused it for sure.”
But a shift was in the making, and that shift came in how both the treatment and the prevention work. According to Deeprose, amongst a growing new activist community, the hunt for knowledge and resources came from those affected by AIDS, either personally or through friends and lovers.
Within the context of an unknown threat, the health authorities were doing little or nothing by way of guidance for those who were growing ill, says John Maxwell, director of special projects at the AIDS Committee of Toronto.
“In the early years of HIV and AIDS, nobody was doing anything about it. It was primarily, in Canada, the gay communities and the queer communities that were affected by HIV and AIDS. And medical institutions really thought that this was a disease that was only going to stay within the gay community. So to be quite blunt, they didn’t give a shit,” Maxwell says.
But, operating in a vacuum of information, gay men, lesbian allies and their friends began to mobilize. And the formula they hit upon would become the gold standard for a common-sense approach to halting the spread of diseases like HIV — harm reduction.
But first, the gay community began an aggressive tack of patient-directed care for those living with HIV.
“There were no supports,” says Maxwell. “There was no impetus to find out more about HIV because there really was this sense that this is just something that is going to kill off gay men. So it was the community that really had to respond to it, and particularly a community that had been for so many years oppressed by the mainstream. The community took a different approach to this, both in the way they supported people living with HIV, so not taking a medical approach solely, but actually empowering people with HIV, have as much information as they can, be informed make choices, be responsible for their health and take care of each other.”
With increasing confidence, the gay community rose up, took matters into their own hands, and figured out how to approach the epidemic on their own terms.
Meanwhile, authorities were pushing a stark abstinence-based approach to sexuality, which was untenable to most people.
“This was essentially ‘just say no to sex’ for gay men,” says Maxwell. “I mean, no one has ever told straight men not to have insertive sex. And what that does is diminish our humanity, aside from being impossible to do.
“Our sexual expression is an inherent part of our physical, spiritual being. It’s a source of joy, pleasure, intimacy, an expression of love, connection and sheer erotic exuberance. It’s simply not a disposable or irresponsible part of our lives. So these are some of the old agendas that got hooked in. Gay men, though, very early on, took another approach.”
The approach that emerged, a safer sex model, was in essence a harm reduction approach, says Deeprose, which made sense to the gay community. He recalls being part of one of the first groups to start aggressively getting safer sex information out to the Ottawa community.
“What I remember in our first condom blitz, we went to the bars with baskets of condoms and a little instruction book,” says Deeprose. “I mean, condoms were not usual in the gay community, as you can imagine. I remember people being grateful. We were a little afraid people might be angry, we’re destroying their fun, but I just remember people saying thank you for getting the information out. Because no one else was doing it, public health certainly wasn’t. And we were doing this on a shoestring. And it was giving more power to a community that had been so frightened, and saying that there is something you can do.”
According to Deeprose, the revelation that condom use was the best way to reduce one’s risk of being infected with HIV took some time to become accepted.
“The whole condom thing didn’t catch on for ages, for two reasons. Scientists said they weren’t sure, and couldn’t prove beyond a reasonable doubt how the disease was transmitted, but nevertheless, just imagine. Had every gay man started wearing condoms in 1982 or 1983, thousands of lives would have been saved. And the other reason was, particularly in public health, and other people who want to control us, were saying that condoms don’t work one hundred percent of the time. Well, yes, there’s a risk inherent in our lives. But those were the arguments used against condoms, so that whole information got delayed.”
When, in 2007, the Conservative Party took harm reduction out of the Federal Anti-Drug Strategy, they were turning their backs on 25 years of research that says policies need to reflect the realities of people’s lives. Proponents of Vancouver’s Insite safe injection facility — and a fledgling project to do the same in Quebec — are meeting opposition from those who don’t understand the history of harm reduction. And other federal harm reduction projects, like the 2006 safer tattoo program for prisoners, have already been canned, leaving more people at risk for contracting HIV.
“It was really important to realize it’s an empowerment, not prohibitive based approach, and the idea is that you modify what you do, not cease doing it. The focus is not on the number of partners or where you have sex, but how. It’s rational and scientific, it’s not fear-based or punitive,” says Deeprose.
For those who weren’t there, it can perhaps be hard to fathom a time when condom use wasn’t an accepted, normal part of sexual activity, but at the time, it was perceived as radical by many.
Bill Downer, vice chair of the board of directors of the Canadian AIDS Treatment Information Exchange (CATIE) says that at the time, the outreach toward those who were being felled by AIDS was indeed based around grassroots groups, and the promotion of condom usage as a means of reducing one’s risk of contracting HIV was at the core of it, and would indeed lay the groundwork for current AIDS organizations.
“At the time, it was all community-driven, and it was in response to this crisis that the community was going through,” says Downer. “It was a time before there were drugs which could increase peoples’ life spans, and reduce the harm from HIV. So, at the time, people were dying all over the place, it was a very crazy time, a time of crisis. So it meant that the community responded strongly by setting up programs that tried to reduce the risk to people.
“I remember when distributing condoms caused a big concern for some people because there was the whole thing that if you give out condoms then you’re promoting sexual activity…Historically, if you look back, there were initiatives that were undertaken which were quite controversial at the time, that have now proven successful and clearly needed to be undertaken.”
But back in the early days of the epidemic, the rational, non-punitive approach espoused by grassroots groups was a breakthrough. It took into account the humanity of the men involved, and it put them in charge of their own health, says Deeprose.
The Canadian gay community’s approach didn’t stop at simply espousing a new ethos of safer sex. It also took into account when and where men were having sex, with strategies aimed at community hotspots such as bathhouses. In the United States, many bathhouses were shut down in a fear-based response to the growing epidemic, but the same was not true of some Canadian cities, including Ottawa. Deeprose notes just how important this difference was, recalling that his activist group organized for public health officials to visit bathhouses so that they could see exactly what went on there. Had the houses been closed in a rash attempt to limit gay men’s sex lives, it wouldn’t have stopped anyone from engaging in sexual activity, but instead would have driven people underground —thus making them harder to reach with support and information.
The movement of activism and community-based direction of health care advocacy, which arose out of the early years of the AIDS crisis wouldn’t fade as the years went by, either. In, fact, says one professor, the means through which AIDS activists began to demand what they and their peers needed in terms of health care would go on to influence other movements to come.
According to Michael Orsini, an associate professor in the political science department at the University of Ottawa, groups such as the vocal AIDS activism group Act Up and others like them set a precedent of refusing to lie down and play the good, docile patient, and instead encouraged people to challenge the never-questioned authority of the medical establishment and make those medical authorities realize that each patient is an expert on their own experience.
“Act Up were in-your-face, and for many people, quite shocking because of their use of depictions of sexuality and various things, but they got the message across,” says Orsini.
“The bigger question is not just HIV patients, it’s patients in general. And I think, for me, the refusal to be a docile body, a patient, just waiting in the doctor’s office , waiting to be told what to do and what treatment you need and all these kinds of things,” says Orsini. “The power and authority of medicine and science is pretty overwhelming, so to challenge that is significant.”
He sees a corollary in breast cancer activism. There, agitators took their cue from the self-directed patient advocacy of the AIDS movement.
“There’s no doubt that the history of the last 25 years of the AIDS activism has really left a mark on a lot of other movements, community oriented movements,” he says.
Despite the success of the AIDS movement to bring infection rates down, according to Dr. Mark Wainberg, director of the McGill AIDS Centre, the work is nowhere near done. Community leaders, he says, still need to do more to continue to push a harm reduction approach, especially when it comes to condom usage within the queer community. He says that the gay community is still “bearing the brunt of new (HIV) infections.”
Deeprose echoes this sentiment, noting that once safer sex practices became more ingrained in the community mentality, rates of HIV did decline. He notes, however, that in the early 1990s, the community “went quiet” again. Discussion and information distribution went down, and as a result, he says, rates of infection began to rise again in the late 1990s.
So, perhaps, a spark of inspiration from the early heady days of the AIDS activist movement must be rekindled, and fanned back to flame as the fight to save lives and keep people healthy marches on.