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AIDS hits a bleak birthday

Service groups cope with changing realities

This year marks a grim anniversary for Toronto. For many of the city’s AIDS service organizations 2008 is the 20th, even the 25th, anniversary of their founding. But none of them are celebrating the occasion.

In fact some of those AIDS service organizations (ASOs) say their situation hasn’t changed. The Alliance for South Asian AIDS Prevention (ASAAP) was founded in 1989 and executive director Firdaus Ali says things haven’t improved at all.

“We haven’t moved forward a lot,” she sighs. “This is a world so alienated from HIV/AIDS. Denial is so huge in our community. Anything we do that mentions gay men or men who have sex with men is absolutely rejected, even today.”

Ali remembers that when she began working as ASAAP’s media coordinator five years ago her South Asian neighbours were not supportive.

“When I got the job I had the neighbours’ kid asking if I was going to wear a mask and gloves now that I was going to be working with people with AIDS. He was 15.”

Like almost all ASOs, ASAAP has its roots in the deaths of gay men, in particular in the 1989 death from AIDS of a gay couple.

“There was this South Asian couple who died without getting attention,” says Ali. “They couldn’t access services in their own language. A group of gay men said, ‘We’re not going to let these deaths go unnoticed.'”

The result was the formation that year of ASAAP, which received its first funding from the City of Toronto in 1990.

“Twenty years down the line we’re still struggling for funding,” says Ali.

But ASAAP’s demographics have changed over that time as South Asian immigration has skyrocketed and the numbers of women infected have risen.

“You have this huge influx of South Asians, thousands added every year,” says Ali. “We deal with a lot of people who come from a lot of different countries. We’ve seen a 15 to 20 percent rise in women in the last year and a half.

“Many South Asian women are not mobile, they don’t drive, they can’t go to doctors and clinics by themselves. There’s a power imbalance; she might not be educated or have a job. There’s a lot of domestic abuse in the South Asian community and it’s on the rise. This is a concern for us because any power imbalance can lead to HIV.”

It’s a similar story at the Black Coalition for AIDS Prevention (Black CAP), now in its 21st year.

“In the late ’80s there was a recognition that Toronto’s black community was being impacted by AIDS,” says Shannon Thomas Ryan, Black CAP’s executive director. “Members came together in 1987 and formed the coalition. A lot of the work was very much focused on black gay and bisexual men, who were very much at the forefront of those who were infected. A generation of black gay leadership was decimated by AIDS.”

But for Black CAP, too, immigration has drastically changed its clientele.

“In the mid to late ’90s that’s when the shift started to happen,” says Ryan. “Between 1994 and 2004 the number of women infected doubled. The progression of HIV in sub-Saharan Africa and the Caribbean is mirrored here. One in five infections in Toronto and two out of every three women who become infected are African.”

Like the South Asian community Ryan says homophobia continues to be a major issue in Toronto’s black communities.

“Homophobia is such a big issue,” he says. “It’s foundational. It’s seen as a gay disease and a white disease in Canada. It’s ‘Batty boy, loose woman or he’s on drugs. They’re not part of our community.'”

But unlike the South Asian community Ryan says the realities of AIDS are forcing a change in thinking.

“In many of our countries of origin HIV has destroyed generations and there’s that recognition,” he says. “When people die you have to start talking about it.”

***

The face of AIDS has changed in the quarter-century since the AIDS Committee of Toronto (ACT) was formed.

In 1983 members of Gays in Health Care, the Hassle Free Clinic and The Body Politic — the predecessor to Xtra — held a public forum on AIDS at Ryerson. They agreed to form the Toronto AIDS Committee, soon renamed ACT.

“There wasn’t anything before those folks came together, not around HIV,” says Lori Lucier, ACT’s executive director.

The organization received its first government funding, from Health Canada and the City of Toronto, in 1985.

“They got started based on private donations,” says Lucier. “But very quickly it was government funding holding a patchwork together.”

Lucier credits those involved with ACT but also the politicians in power then.

“There was a high level of expertise in terms of government relations and political savvy at ACT,” she says. “People who were already in the political scene, lawyers, were working their networks really hard. They had to shift the spectrum. There was blatant homophobia and discrimination when it came to AIDS. It took great courage for some of the politicians to provide funding.”

Lucier contrasts the response of the federal government in ACT’s early days with the response of Stephen Harper’s government now. She has harsh words for the Conservative prime minister.

“They’re sending a signal to the people of Canada that HIV isn’t important as a public health issue,” she says. “We’re turning back the clock on what we know to be the right way to do things. They’re playing politics with people’s lives.”

It was Harper’s response to AIDS that also led to the return of AIDS Action Now (AAN), the group whose demonstrations and street-level actions had helped kickstart political action in the late ’80s. The group had, according to cofounder Tim McCaskell, “gone into hibernation in 2000.”

“People were long dead,” he says. “Michael [Lynch, the academic and Body Politic writer who helped found both ACT and AAN] was long gone and so were most of the others. People were tired.”

But Harper’s refusal to even attend the World AIDS Conference in Toronto in 2006 brought AAN back to life.

“When we decided to explore rejuvenating AAN there seemed to be a renewed thirst for activism and for stepping up to the global challenge,” says early AAN member Glen Brown. “It’s been so long since we’ve had that kind of full frontal attack.”

It was that full frontal approach that allowed AAN — from its founding in 1988 — to play a pivotal role in forcing governments and medical professionals to maintain and increase their initial levels of support.

McCaskell remembers the early issues.

“The AIDS test had just come in,” he says. “Everybody was being advised not to take it, not to get your name on some government list. There were no drugs anyway. We identified problems with hospitals, with nurses coming in in space suits. There was no research going on in Canada at all. Special access to AIDS drugs was being refused out of hand.”

McCaskell says that initially anger within the community was turned against groups like ACT and the Toronto People with AIDS Foundation.

“This thing dropped on the community like a ton of bricks,” he says. “A lot of anxiety had been turned against ACT and PWA. People were saying they were doing support groups — what the fuck is that? Nobody was doing politics.”

But it was soon decided that the best approach was to work in cooperation.

“It was decided to keep infighting to a minimum,” says McCaskell. “Our job was to do the politics.”

AAN’s first action in 1988 was against a drug trial for pentamidine, a drug that had already been approved in the US. The test involved people with AIDS, half of which were given a placebo.

“There were 325 people on placebos,” says McCaskell. “Our calculation was that between 10 and 15 people were going to be left to die to get this drug approved.”

An AAN march delivered several coffins to Toronto General Hospital, where the trial was taking place, demanding that the trial be halted and the drug be made available to those with AIDS. Later that year, after further actions including burning the federal minister of health in effigy and after a federal election, the new health minister in Brian Mulroney’s government announced AIDS patients would have access to experimental drugs.

In 1989 the federal government launched the first national AIDS strategy, which included setting up a national treatment registry. AAN launched its own registry, which eventually was adopted by the government and which led to the Canadian AIDS Treatment Information Exchange, the Prisoners HIV/AIDS Support Action Network and the HIV/AIDS Legal Clinic of Ontario.

“The reason we were able to have the clout we did was we were presumed to have the community behind us,” says Brown. “The big test was Pride parades, hearing the cheers when we marched. We took over a parade, had a die-in with the cooperation of the parade marshals. The first float was kids of queer parents. They were the first to flop. They took it very seriously. You’ve never seen a die-in until you’ve seen drag queens flop.”

AAN was also involved in getting the provincial NDP government of Bob Rae to establish the province’s catastrophic drug plan, which allowed access to drugs.

“[AAN member] James Thatcher’s deathbed video saying he was dying not of AIDS but of neglect, that he couldn’t afford drugs without going on welfare but would lose his apartment, had a tremendous effect,” says McCaskell.

AAN also harassed and heckled Jean Chretien throughout the 1997 election campaign, until he agreed to renew the federal AIDS strategy. And then AAN went in hibernation.

But the community of gay men that had formed AAN and which had supported the group was beginning to be overwhelmed by the rapid spread of HIV/AIDS to other communities.

Lucier says that struggle was there almost from the beginning of ACT.

“That tension between the lesbians and feminist groups who came to be involved and the gays in The Body Politic was there from the start,” she says. “What we do with HIV-positive people, people at risk, a variety of ethnocultural communities? Who walks through the door and what response do we have to shift the agency, to be culturally responsible, to address different communities?

“I remember when I first joined the agency in 1997 there was that tension. That debate is still happening. Whether that’s comforting or frustrating I don’t know.”

Lucier points to a fight five years ago over a prevention poster featuring an erect penis which hung in ACT’s offices.

“There was a really strong reaction by one of our clients, whether she felt threatened, whether this was a safe space,” she says. “It started a debate about how we maintain our roots in the gay community. We never came up with an answer, but a lot of the long-term survivors, they feel a real sense of loss at what the agency has become.”

But the reality, Lucier says, is that ACT is now seeing a vastly different group of people than 25 years ago.

“There’s the Portuguese community, youth at risk, the evolution of what our women’s programming looks like,” she says. “We’re reaching out more and more to African and Caribbean women, there’s more and more women coming in.

“There’s much higher levels of mental health issues and poverty. It’s a factor of people living longer with HIV, they become really economically marginalized. When people have no stable housing, no source of income, it affects their health.”

***

The new reality of people with HIV and AIDS (PHAs) living longer has had a particular impact on two organizations that provide housing — Casey House and Fife House, both marking their 20th anniversaries this year.

Casey House, which initially served solely as a hospice for the dying, now provides home care for many clients.

“Only about 15 percent of our clients die here now,” says Stephanie Karapita, Casey House’s CEO. “Casey House has always been rooted in the gay community and the majority of our clients are still gay. But 20 percent of our clients are now women and a number are from endemic countries and First Nations.

“We’re aware that not everyone who needs our services will cross our threshold. We’re available to meet with them in a location that doesn’t have Casey House on the sign.”

Last year, Karapita says, 90 people passed through Casey House’s 13 beds and another 100 were part of the home care program. Today PHAs move from the hospice to home care.

“Another crisis will emerge, they’ll come here, build up their strength, go home again,” says Karapita.

It’s a change that Stanley Read, the head of the HIV/AIDS family-centred care program at the Hospital for Sick Children, sometimes finds hard to believe. Read was on the board of Casey House from 1988 to 1990

“In the beginning we didn’t have treatment,” he says. “You saw them getting sicker and dying. From so much death and dying and grief to a totally different outlook.”

Read was asked to join by the late June Callwood, who named the hospice after her son who had been killed by a drunk driver.

“It was June Callwood and her friends who had supported friends who were dying of AIDS,” he says. “June, when she made up her mind to do something, knew who to call and the doorbells to ring.”

That included the door of St Michael’s Hospital. Casey House needed a hospital partner and Wellesley Hospital was unenthused, Read says. St Mike’s agreed to come on board.

“We were a little skeptical,” Read says. “Roman Catholics, run by nuns, their attitudes toward gays. But they were marvellous. It was the beginning of their involvement with HIV/AIDS.”

Read says the support from the queer community and beyond was remarkable in the early years.

“The support was there,” he says. “As it became established the community provided all kinds of volunteers. It was fairly informal but it was there and constant.”

But Karapita says things have changed.

“AIDS has lost its place in the sun,” she says. “They don’t wear red ribbons at the Oscars any more. It is more challenging to raise funds.”

Fife House too has been affected by the changing demographics of AIDS. But while the faces and communities served by the organization may have changed, the mission has remained the same: helping PHAs find supportive housing.

Fife House was founded in 1988 by lawyer Mary Anne Shaw in honour of her friend George Fife who died from AIDS without support.

“The initial residents were gay men who had no housing, who had been shunned by family and friends and had nowhere to go,” says Dan Newport, a volunteer with Fife House since 1989 and a member of the board in the ’90s. “So there’s that connection to the homeless today.”

Fife House currently operates three houses and an apartment building in Toronto, housing a total of 122 people. A new building on Sherbourne St, to open this summer, will include 56 additional units. But Fife’s Homeless Outreach Program also helped find affordable and supportive housing for more than 300 people in 2007.

Homelessness is one of the downsides of people being able to live long lives with HIV/AIDS.

“In terms of affordable housing it’s always a crisis,” says Keith Hambly, Fife House’s executive director. “There are very few organizations dedicated to finding housing for PHAs. Making that link that people live longer and still need affordable housing is a challenge. More and more it’s becoming an issue of homelessness and poverty.”

For Newport the changes in AIDS meant a shock in dealing with clients.

“As we saw the demographics changing, as we saw people with different housing needs or coming out of correctional instititutes, houses with gay men weren’t appropriate,” he says. “I don’t think I even knew there would be women with AIDS until I began finding out that for most of the world it wasn’t a gay disease, it was a heterosexual disease.”

The changes, Newport says, mean that young gay men — as he was in 1989 — will probably no longer come together over AIDS care.

“I was married, I had kids,” he says. “I found Fife House. Being a gay man who hadn’t yet come out, I devoured the news and so I read about AIDS.

“This was the issue that was affecting the community. It initially gave me that connection to the gay community. It gave me a sense of doing something.”