As the staff, volunteers, and program participants of the People With AIDS Coalition of New York join Body Positive, they bring with them a long tradition of helping people with HIV help themselves, a legacy of empowerment.
PWAC first came into being in 1985, when Michael Hirsch, who also founded Body Positive, joined with a small group of other men and women to share information and offer support to people with AIDS. Since then, the agency has traveled an often winding, sometimes bumpy, road.
The fledgling agency's first home was in St. John's Episcopal Church in Greenwich Village, where it operated "The Living Room," a large safe space for people with AIDS. It was here that PWAC initiated its first information services -- the hotline, which today fields roughly a thousand calls a month from around the country on its toll-free 800 number, and Newsline, an AIDS newsletter that grew into a magazine with a readership of some 40,000 people a month.
The following year, PWAC added support groups to its service menu. As with all of PWAC's services, the emphasis was on helping people help themselves, and even these earliest support groups were peer led.
Demise and Rebirth
PWAC grew throughout the late '80s and early '90s, attempting to keep pace with the service needs presented by the exploding epidemic. But expansion -- and some other factors -- brought financial woes to the agency.
Jay Laudato, Associate Executive Director of the Callen-Lorde Community Health Project, joined PWAC's Board of Directors in 1991. He remembers that by 1992 the agency had leased a full building on 26th Street and was renting out some of the floors to other organizations. Then, he says, "the rental market fell out in Chelsea. We were paying an extraordinary amount of money per square foot for the building, and we also lost some grant funding. We had a really bad lease agreement where we were responsible for all capital improvements on the building. So when we had to go with the Americans with Disabilities Act, we had to replace the elevators. We couldn't financially survive anymore. Bankruptcy was something that we needed to do in order to get out of that agreement."
But Laudato and fellow Board members Jack Rosenberg and Michael Ryan were not willing to let PWAC die. "We had a commitment to the programs. PWAC has always been and continues up to the present time to be a coalition, so that it was a vehicle by which people who were living with HIV and AIDS, who wanted to come together to seek out information or get control over their lives, could find a vehicle for empowerment."
These three Board members brought in some new people to serve as Directors of a reincarnated PWAC and recruited John Hatchett to serve as the new organization's Executive Director. Hatchett approached Rodger McFarlane and Tom Viola, Executive Director of Broadway Cares/Equity Fights AIDS, and obtained a $14,000 discretionary grant from BC/EFA to use as a security deposit on new office space on 17th Street. The new agency was named People With AIDS Coalition of New York, differentiating it from the former just plain People With AIDS Coalition. Tom Viola joined PWAC's Board and later became its Chair.
The new Board was able to convince government funding sources, such as the AIDS Institute and the Department of Health, which administers the Ryan White CARE Act, to transfer PWAC's contracts and funding to its successor agency. Thus, despite complete financial and legal reorganization, there was virtually no programmatic change.
That is not to say that there were no changes in the way the new PWAC delivered its services, and to whom.
From its beginning, the old agency had concentrated on serving people with AIDS, but not people who were merely HIV-positive. "The kind of support people were getting from that," he says, "was consistent with people who were at a certain point in the disease and where we were with treating the disease. That needed to be changed."
Laudato continues: "The difference between AIDS and HIV-positive is no longer real. For people who are living with HIV, the issues are very much the same. We began to think more broadly about this. We began to think about the people who were in people's lives, and families, and other people -- people being affected by it as well as infected by it. Our original slogan was, 'We are sometimes patients. We are never victims. We are people with AIDS.'"
Tom Viola recalls that even at this early date, there was some thought of joining forces with another AIDS organization -- perhaps Body Positive. "We started looking around in '93, '94, into should we be merging these operations with another organization, and ironically the one we looked to first was the one we ended up with five years later, Body Positive. But it really just wasn't time. At that point it wasn't as patently obvious as it is now that the services could be merged and that there wasn't that big a difference between somebody just diagnosed and somebody who was further along in the disease. Also, the money issue wasn't as important or dire as it is now."
Both Laudato and Viola agree that PWAC was always very staff-driven and program participant-driven. According to Viola, "The Board was not involved in day-to-day creation and management of programs. We were really there to support John Hatchett, Phil Matthews, and Doug Wirth [the three men who have served as Executive Directors of the reincarnated PWAC]."
As Laudato puts it, "The organization always sought to be a place for people to come together and gain information and support and use what services we had to take control of their lives and live as fully as possible."
That philosophy very much shaped the direction the agency would take during the latter half of the '90s. Where the original PWAC had been started by, and aimed at, primarily gay white men, when new populations came seeking AIDS services, they brought with them new needs, new priorities, and new strengths.
"It changed very early on," says Laudato. "A very substantial component of what PWAC was doing were services with women. Sister to Sister, our women-of-color support group, is by far the largest component in our support and outreach program. And the dynamic really changed. We started talking about families, and families needing support, and people in different places and different identities. It became a very diverse place. Originally, when people were coming to PWAC, the driving issue in their lives was AIDS. As we became a more diverse place, encompassing a lot of cultures and a lot of sexualities and different genders, and taking into account families, AIDS became part of their overall needs. It wasn't the single driving factor. Many people have substance use that is as great an issue in their lives, others their concern for their families, others who are incarcerated. Support and outreach were the entry places into getting access to care. It didn't replace services."
As PWAC prepares to close its doors and see its programs integrated with those of Body Positive, those who have been part of the decision look back.
"The proudest accomplishment we have," says Jay Laudato, is that we have stayed true to our mission -- to self-empower people with HIV. We changed with the epidemic, we became increasingly diverse, and we enabled people to define the things they want. We changed from being a place that was just for people with AIDS and primarily one community, to a very diverse, multicultural entity."
Tom Viola adds, "When we say two years ago that our funding was going through a rough spot, that there were government grants that were cut or lost, I think that our willingness to examine, reexamine, the possibilities of consolidation with Body Positive is really something to our credit. What it required us to do was to let go of the Board's identity. We needed not to make the organization's identity primary, as opposed to the services we provided to clients. And we were willing to take the steps to make this work. I've seen this kind of thing completely fall apart because the groups can't decide what the name of the new organization's going to be. Forget what it's going to be offering the people you're supposed to be helping. You need to be willing to trade turf for impact."
Outgoing PWAC Executive Director Doug Wirth echoes the sentiment that the integration of his agency's services into Body Positive's program is in the best PWAC tradition. "It is crucial that the legacy of our founders -- those who have died, and those who live, face challenges, and thrive in the midst of tremendous uncertainty -- that people with HIV and AIDS have a place to turn where they are respected, appreciated, and acknowledged for the courageous lives that are theirs."
Laura Engle is Editor of Body Positive.
Photos by Richard C. Wandel, Courtesy National Archive of Lesbian and Gay History
Back to the July 1999 Issue of Body Positive Magazine