Ann Silversides, Author of

AIDS ACTIVIST
Michael Lynch and the Politics of Community

In conversation with Peter Steven, May 2003

1. Why is Michael Lynch an important person to remember?

Ann. Michael played a pivotal role organizing in the gay community when the AIDS crisis first hit in the early 1980s. He had already played a leadership role in the movement for gay liberation in 1970s, so he was well known and politically experienced. When the epidemic hit, he helped set up important organizations -- the AIDS Committee of Toronto and, a few years later, AIDS Action Now! He was also the driving force behind the AIDS Memorial in Toronto. Lynch believed that a cohesive strategy based in the community was needed to respond to AIDS. The AIDS crisis in Canada began with a campaign of right-wing religious fear-mongering. Lynch saw the necessity of fighting against the stigma associated with this health crisis and resisting panic.

Later, Lynch and others realized that the official response to AIDS centred on prevention education for the general public and palliative care. There was appallingly little attention paid to the needs of people living with AIDS, and next to no government leadership with respect to testing or releasing promising drugs. The mission of AIDS Action Now! was to make promising treatments available to help people living with AIDS -- in other words treatment activism. Lynch, by the way, was also a poet and his book, These Waves of Dying Friends, includes several AIDS elegies.

2. Did Michael's travels back and forth between Canada and the US -- his dual citizenship -- help him develop a special perspective?

Ann. Absolutely. He was an American by birth, a University of Toronto English professor, and he was well connected with US gay movements and gay intellectuals across North America. He had strong ties with people and groups in San Francisco and New York, where he spent time researching early gay history, and he also spent a good deal of time on Fire Island, a famous gay resort near New York.

In the earliest days, he knew that AIDS was coming to Canada-it was only a matter of time. Because the epidemic in Canada was two years behind the US, it was possible to learn from mistakes made south of the border. Lynch was critical of the fact that early on in the epidemic, frightened gay men were raising money and donating it to scientific research. Lynch felt the community had to be more critical of the workings of the scientific establishment, and argued that money should go first to people affected by AIDS. When the need for more activism around treatment and drugs became apparent Lynch refrained from criticising service agencies for not doing the political work. Instead, he fostered cooperation between AIDS activist groups and AIDS service organizations.

In Canada the bath houses were never closed, unlike San Francisco, partly because the gay community convinced the health authorities that the bath houses were important gathering places for safe sex education with hard-to-reach gay men -- those who were in the closet, for example, or not part of an identifiable gay community.

3. What's the story of the yellow glove, featured on the cover of the book?

Ann. In the late 1980s, when activism began to take hold, U.S. police --fearful and misinformed about transmission of HIV -- started wearing yellow rubber gloves at AIDS demonstrations, as if HIV were easily transmitted. In response, Lynch and others wore yellow kitchen gloves at a 1987 demonstration at the U.S. Supreme Court in Washington, D.C. The gloves were thus both symbolic and a playful attempt to "accessorize."The glove pictured on the cover is the actual glove that Lynch wore. I came across it by accident at the archives, in a box that had not been itemized. As you can see, it had been signed by other activists in Washington. It was typical of Michael to have saved it -- he saved everything!

4. Tell me about the Canadian Lesbian and Gay Archives.

Ann. The Archives, which is run by volunteers, has played a key role in the community, and this is their Thirtieth anniversary. Lynch was involved in the early years -- at one point he was even going to will his house to the Archives -- so it was natural that all his diaries, letters, and significant personal items went there. This material not only facilitated my writing of the book but the idea to focus on Michael came from the Archives staff. The Archives also houses hard to find gay periodicals from Canada and the United States and, among other things, the records of other key activists. It has been used extensively by researchers for the 1997 Krever Commission, which investigated issues related to AIDS and the blood and plasma supply in Canada.

5. What made Lynch's views controversial in the early days of the epidemic?

Ann. He was controversial, especially in the US, in his warnings against panic. In the early days many gay men were terrified -- here was this mysterious, deadly illness that was related to sex and for which there was no test! Many took to blaming themselves and their sexual activities for the new illness. But Lynch argued that the community should not give up the gains it had made during the earlier period of sexual liberation. And, in very short order, the gay community invented safer sex.

6. What would you say was the key debate within the community in the early days?

Ann. In addition to the debates over how to preserve gay liberation, the key issue was scepticism of government health officials, scientific and medical authorities and the pharmaceutical companies. Lesbian and gay activists had already learned to be wary of the legal system -- especially in Toronto, in the wake of the massive bathhouse raids by police. But throughout the 1980s there was a learning curve about those responsible for dealing with the epidemic. Here, activists learned from the women's health movement. And they weren't alone in their analysis and criticism. In 1988 the Royal Society of Canada issued a scathing report on the federal government's record on AIDS. At the least, bureaucratic inertia and indifference meant many Canadians with AIDS were denied timely access to lifesaving preventative treatments.

7 . What made AIDS different at the time - as a disease and as a medical emergency?

Ann. It was new and unknown. It was fatal and it affected young people in their prime. Through a quirk of fate it hit groups that were already stigmatized or marginalized in society -- like gay men and injection users and, to a lesser extent, hemophiliacs and in the early days Haitian-Canadians. I remember people saying they were afraid of just being near gay men. But despite the devastating toll of the epidemic in their community, gay men were able to respond quickly and effectively because, having already lived through several assaults from authorities, they were politically savvy and experienced. They gained strength in organizing and already had the ability to speak out. Still, given that this was a health threat, it is noteworthy and surprising that the community itself undertook the first education campaigns - not health authorities.

8. Do young gays and lesbians have ways of knowing their history?

Ann. Well, there are many people now documenting Canadian gay history. For background and context, I drew on work by Gary Kinsman, Tom Warner, David Rayside, Rick Bebout and others. But when I began my research I was surprised that so little had been written about early responses to the AIDS epidemic in Canada -- there were two books on the tainted blood scandals, but none on heroic efforts in the gay community. And now there is a whole generation that has grown up with AIDS. Today, in North America, the crisis atmosphere around AIDS has faded -- I guess that's mostly because people aren't dying as quickly. After so many years of horror, there is some sense of relief and, unfortunately, complacency. I was touched, however, several years ago after the CBC broadcast of my Ideas documentary series, Sex, Death & Grief: The impact of AIDS losses among gay men. Many young men thanked me, saying they had no idea what it had been like in those early years.

9. How did you get involved?

Ann. I covered one of the first AIDS Action Now! demonstrations as a reporter for The Globe and Mail. Later I became the newspaper's health policy reporter and did some AIDS reporting. My career has been spent mostly writing about health and social policy and social justice issues and AIDS, of course, touches on all those issues. But my cousin's death from AIDS was a particular catalyst for me. After he died, I took up AIDS reporting more seriously and, as an independent journalist, wrote many articles for the medical and gay press.

10. What was the most startling thing that you learned?

Ann. I suppose I was surprised to see how bureaucratic -- and often homophobic -- some of the provincial and federal government bureaucrats and politicians were. Some were appalling and others were just inept, but both types caused significant harm. For example, helpful drugs were not released to dying AIDS patients -- it took rabble rousing activism to get things moving. Like many others, I was discouraged and disheartened by the findings of the Krever Commission in the blood supply, by the tales of bureaucratic inertia and by cost considerations ranking above concern for human lives. Sadly those same themes are integral to the story of Canada's reaction to AIDS.

11. Has the Left in general something to learn from the community politics around the AIDS tragedy?

Ann. This wasn't solely a left-wing issue. People from across the political spectrum worked together around a pressing issue. Lesbians, especially women's health activists and those involved in social justice issues, were big supporters of gay men. And in the early days, gay activists tried hard to form links with other affected groups, such as the Haitian and hemophiliac communities. There has been some mythologizing around the early days so it's important to know of the struggles and debates. This history provides an object lesson about public health and community response -- it reminds us that in times of a health crisis, people can become stigmatized pretty quickly. Of course we've seen that recently, with SARS.

12. And has the medical establishment learned anything?

Ann. During the crisis activists became as expert as the doctors who were struggling to keep current with the quickly developing knowledge around the new illness. Thanks to AIDS activism, there has been a sea change in health care politics. It is now accepted that patients -- the people most affected by an illness -- have a place at the table on working committees and policy-making bodies. Activists forced changes in the conduct of clinical trials and ensured ethical standards are met and drug trials are conducted. People shouldn't be forced into trials with experimental drugs because they have no other option. The response to the AIDS crisis was the first time in history that patient groups organized. This provides a model for others. Of course, things are far from perfect today -- early calls for good post-marketing surveillance of drugs have gone unheeded, too many people with AIDS live in poverty, we still don't have a vaccine or a cure, drug companies are buying off patient groups, governments, particularly in the United States, let injection drug users die rather than provide clean needle exchanges, huge, unthinkably large numbers of people are now dying of AIDS around the world in large part because of government neglect ....