25 Years - through Stories | The Birth of ACT
For nearly as long as there has been HIV/AIDS in Toronto, the AIDS Committee of Toronto (ACT) has been here to help. The brainchild of a small group of community activists, ACT was formed 25 years ago, on July 18, 1983, in response to the hysteria and misinformation surrounding a mysterious and devastating illness that was affecting gay men and hemophiliacs: AIDS. Little was known about AIDS at the time, but a terrible stigma was attached to those who had it, and almost nothing was being done to help them.
AIDS had first entered public consciousness two years earlier, in the summer of 1981, as a “rare cancer” found in 41 gay men in New York and San Francisco. Little was known about the disease and at first Torontonians thought it might not affect them.
Doug Elliott, a lawyer and one of ACT’s first board members, recalls when AIDS was little more than a rumour: “Like a lot of people at the time in the gay community in Toronto, I really did think AIDS was a remote American problem and did not have much to do with my life... what perhaps had been blown out of proportion by the religious right, who were using it as just another stick to beat up on the gay community.”
Although Toronto would not see the effects of AIDS until two years after New York and San Francisco, media on both sides of the border began to run articles about the mysterious illness, frequently presenting anecdotal evidence and speculation as scientific fact.
"We should not be concerned with developing a new sexual ethic. Rather we need to seek ways to make sex as healthy and risk-free as possible."
As it became apparent the disease was somehow affecting the immune system, a name was assigned. In January 1982, Gay-Related Immunodeficiency, or GRID, was coined. In July of the same year, the US Centers for Disease Control adopted the term Acquired Immuno-Deficiency Syndrome, or AIDS.
Despite early evidence that unusual cases of Kaposi’s Sarcoma, Pneumosistis Carinii Pneumonia, and immune suppression were appearing in heterosexuals and in drug users as well as gay men, the media almost always played on people's fear or hatred of gays and lesbians. A 1982 New York Post headline called AIDS "A Killer Gay Disease."
Later, articles began to appear about the "4 H's" — Homosexuals, Hemophiliacs, Haitians, and Heroin users. Focused on the fact that people were getting sick, these stories tended to be sensationalistic in tone and light on actual information. Toronto media outlets picked up these news items, most of which originated in the U.S., and often reprinted them wholesale.
By 1982, gay men in Toronto were beginning to fall ill with AIDS. With little recourse to effective, supportive health care, many men died quickly. As local media began to publish more fear-mongering articles about AIDS, the Body Politic, Toronto’s gay and lesbian news magazine at the time, decided to mount a response. Gay activist Michael Lynch and epidemiologist Bill Lewis began writing articles to counter the misinformation.
One of the first stories The Body Politic published about AIDS was titled "AIDS: discounting the promiscuity theory." Written by Lewis, it was a radical departure from the messages provided by U.S. gay activists. Some American activists were promoting the idea that gay men were overloading their bodies with common sexually transmitted diseases (STDs) through multiple sexual encounters and that was why they were getting sick.
Lewis believed this was morality dressed up as science — bad science. HIV, the virus that causes AIDS, hadn't been discovered yet, but there was enough evidence to know that AIDS was being passed through blood and through needle use. If that was the case, it meant that a single exposure might be enough to spread the disease.
Lewis and Lynch decided that the messages needed to be smarter and more honest about what was and wasn't yet known about illness. While The Body Politic confronted the media with the facts about AIDS, two other groups were also playing key roles — Gays in Health Care tackled the politics of the health system, while Hassle Free Clinic saw more and more patients with symptoms of AIDS, offering non-judgmental support.
In March of 1983, Ed Jackson, the editor of The Body Politic, received a call from the Canadian Red Cross. The Red Cross wanted to know what message they could provide to people about AIDS and blood donation. Recognizing that much-needed leadership on the issue of AIDS in Ontario would have to come from civil society, Jackson decided to call a meeting. He invited Michael Lynch, lawyer Harvey Hamburg, Dr. Robert Coates, Robert Trow of Hassle Free Clinic, and five others.
At this meeting, this group of ten formulated a public statement about blood donations, but they also began to plan for some kind of entity that would provide ongoing support for people with AIDS. This meeting became, de facto, the first meeting of what would become the AIDS Committee of Toronto.
Two months later, Lynch, Lewis, Trow, journalist Stephen Fontaine, and academic Burt William Hansen filed the letters patent with the Government of Ontario, and the AIDS Committee of Toronto, the province’s first AIDS service organization, was officially born.
