This year marks the 15th anniversary of Chicago's Test Positive Aware Network. What began as an informal meeting, held in founder Chris Clason's living room nearly two decades ago, has survived the myriad growing pains becoming an established agency entails, and indeed, continues to thrive and move forward through often very difficult times. While the agency has expanded beyond serving its initial constituency of predominately gay white males to include a variety of impacted populations, its mission of serving people with HIV, providing all of us with information and empowering all of us to live fuller, healthier lives through peer-led programming, has never wavered.
Positively Aware, the agency's bimonthly journal which started as a couple pages xeroxed, stapled and distributed hand to hand by volunteers, has grown into a national, and international voice for people living with and affected by HIV and AIDS. It's read by everyone from HIV-positive folks to the health care workers who care for them, coast to coast on multiple continents. Like the agency that spawned it, Positively Aware remains committed to disseminating information in a clear, understandable way, and most importantly, remains committed to living.
Over the course of a few weeks in July, a number of members, past and present staffers, and community leaders shared their stories about the epidemic and the important role TPAN has played, and continues to play, in the years since its inception.
"We were the pariahs of society."
Bill Rydwels, a founding member of the organization, discovered he was HIV-positive in 1985. "There was nobody who wanted to talk to anyone who was HIV-positive," he recalls. "You didn't know if you could afford to tell your family. You knew that there might be a problem telling your friends, and certainly coworkers. You knew you could lose your job, and if you lost your job, where were your benefits? So a young man named Chris Clason, who was fabulous, put out an ad in Gay Chicago in 1987, and asked who would like to get together to offer support to one another. There were nineteen of us at that first meeting. We realized we needed a support group so we'd understand what to do, how to do it, and to stroke one another's back. We were the pariahs of society. That actually hasn't changed over the years, we're still pariahs, but now very expensive ones."
Bill, a national advocate for people over 50, continues to attend support groups, specifically one that meets during the day called Daytimers. Paul, another member of Daytimers, has been coming to TPAN for many years himself. "Early on," he says, "I came to this group for the information. People were constantly dying. I also used the legal clinic twice to write and update my will, I've used the resource library a whole lot and I've gotten a lot of advice from people in the group about how to apply for and get disability."
"I used to come all the time," Paul continues, "and now I come maybe once every two months, because now I have a different set of issues. Daytimers, though, was really critical for me, and not just for the information, but because I needed something to do during the day after I got my disability. Just contact." He laughs. "You can only watch Oprah for so long, and I needed to have something else in my life. The chance to get out of the house and talk with other people, to kind of fill the hole that was there during the day. Nobody wants to hear about how devastated I was when I developed this buffalo hump, or wants to hear all the stories about my diarrhea. But these guys have been there and know what I am talking about. Other people don't get it."
Jerry has also been a longtime member of Daytimers. "For me it acted as an organizer for my life. When I was diagnosed I happened to be very sick," he says. "After a year of recovery your life changes completely. I didn't have the same friends, some of them didn't want me as their friend anymore, both gay and straight people. And some didn't know how to talk to me, because they didn't want to say something wrong and felt better just leaving me alone. Monday and Thursday mornings I had something to do. Now, once you start that with a base for your week, you can work around it. You're like everybody else, you have things to do. [Having AIDS] is like being retired without being able to tell anybody, the secretiveness of it."
"He was so afraid."
"I remember this one guy, we used to call him Mercedes Benz," reminisces Steve Wakefield, the first paid executive director of the organization. "He would park across the street, and then after he was sure there was no one walking down either side, he'd run into the building, grab a copy of the newsletter [the predecessor to the journal], sit in his car, read it, make notes, and then throw the newsletter in the trash can and drive away. He was so afraid that somebody might realize that he had come to a place like TPAN."
Stigma affected those infected, and those who treated the infected as well. Wakefield recalls that, "hospitals who said they were affiliated with AIDS actually lost patients and sometimes staff members, who said they didn't want to be in an AIDS hospital. Illinois Masonic and St. Joseph's both made a major commitment to the community in Chicago by creating HIV/AIDS units. They actually lost some business, but both of them had boards whose mission was to take care of the local community."
Wakefield, who currently is the director of community education and relations for the HIV Vaccine Trials Network and lives in Seattle, looks back at the intense bonding and emotional turmoil that were hallmarks of the earlier days of the epidemic. "Friendships were made quickly. Once you knew you were HIV-positive, often your life expectancy was very short. People didn't have time to be picky about friendships," he explains. "If someone came in and said they were HIV-positive, they immediately became a part of the TPAN family. And all of the services and all of the care was available to them. It was people living with HIV caring for other people living with HIV. It was a great place to be, from that perspective, but it was also a very hard place to be, having to deal with a lot of loss. You met people, you became quickly attached, and then they were gone from your life."
"With the current political climate, we need more people to become more politically involved in HIV and AIDS policy. We have got to speak up for ourselves. We have to take ownership of this disease."
"What would Michael do?"
"Steve really put TPAN on the map," Mark Ishaug, the executive director of the AIDS Foundation of Chicago, states emphatically. "His big brain and his razor sharp vision, created an organization like no other in Chicago at the time." He continues, "Then of course came Michael Thurnherr [the agency's next executive director]. From the moment that I met him, I'm not sure that falling in love is the way to describe it, but I fell hard for Michael. I was amazingly drawn to him," he says, "I had never met anybody like him -- so smart, so brilliant, and so committed to the fight against AIDS. I've been doing this work as a volunteer and as a paid staffer for 15 years plus, and I really can honestly say that I've never worked with anybody like Michael. During challenging times and periods of great stress and disillusionment of which there can be many in this work, I really do say to myself, 'What would Michael do?' I think about his wit, his smarts, his charisma, his leadership, his laugh."
Ishaug also learned a great deal of political savvy from him. "We had meetings together with ACT UP (AIDS Coalition to Unleash Power), we had meetings with the director of the state's health department, we had meetings with the governor. We met with all these folks, and Michael had this uncanny ability to be as influential with the great folks from ACT UP, as he was with the governor, and with service providers, and with people living with AIDS. Everybody respected him."
Thurnherr's skills around activism and advocacy were somewhat held back, however, according to Ishaug. "I think that Michael's biggest frustration was that he always wanted the organization to be a stronger advocate for people with AIDS," he believes. "Not just peer support, and groups, and mental health support groups -- I mean, he wanted all that stuff. But I think he was a natural advocate, he was an activist advocate, and I think of his many special skills, that was his greatest. He could get things done, not just by screaming and shouting stronger than the next guy, which he could definitely do, but figuring out a program, figuring out a plan. I think he really wanted to make TPAN a real strong systems advocacy organization. And I don't think he was able to make that happen, I just don't think that was where the board was."
"Willing and able to change."
Perhaps TPAN was not then at the point to be able to realize Thurnherr's full vision, but it never really lost sight of it's mission to serve those who were being impacted by the epidemic. "I think one of the strengths of TPAN was that it was willing and able to change with the epidemic, and still is," says Dennis Hartke, the executive director from 1999 to June 2002. "Clearly in the early 90's, TPAN was mostly gay men in their 20's and 30's, gay white men. I think TPAN has been quite successful in recognizing the changing epidemic and working to address the new populations that were and are affected. Brothers United in Support (BUS) is an example of that. The way BUS came about was that it did not come from staff, it came from members. TPAN was willing to listen to community members who came to them who said they needed this type of support group, for African American gay and bisexual men, and will TPAN do it? In fact BUS had been peddled to two or three other agencies who had said no."
One of the founding members of BUS is Lester Davis, who recently moved from Chicago to Washington, DC to further his education. "I remember coming to TPAN in 1995. I went to help a friend who was recently diagnosed, bisexual, and in my church. We were dating, and we went. I had already known about my own status since 1986," he says. "Men of color were not well represented in a lot of organizations. My friend selected TPAN because he had seen information on the north side in the bars and everything, and decided to go north," he explains. "There were not a lot of men of color present at the meetings, the support groups. Timothy Gates, a former program director, myself, and a couple more people had met at his home and just thought that TPAN needed a program for African American men specifically. Gay and bisexual, transgender did not happen 'til later. It was mainly a trial type of program, and we decided the brothers needed a safe space to meet and talk about their issues."
"They are friends."
The program grew to be one of the agency's strongest and best attended, and continues to be. Even when people move away or otherwise get on with their lives, BUS still provides a touchstone, a network, for many. "We can talk and give the support and love to each other but don't necessarily have to be in the same city to stay in touch," enthuses Davis. "In fact in D.C., there are two BUS members who live here already, and now I am the third. I still have a lot of connections with guys in Chicago, they're in my little black book. You check on your brothers because you know them, and they check on you. If you're doing something that they don't like, they will check you," he laughs. "And I have those types of friends, these BUS members. Beyond membership of TPAN, they are friends."
Growing and evolving does entail some bumps in the road, however.
"One of the biggest challenges was the transition from what had been the traditional founding members to the new groups that were being impacted," says Hartke. "I have talked to other peer led organizations around the country, and they have all had, and continue to have, that issue of making that transition from being a largely gay white male organization to one that is serving people of color, women, and injection drug users (IDUs). The problem that creates is that the original members, the old members, feel they are being ignored, feel that their issues are somehow not as important in the HIV field as African American men who have sex with men for instance, or IDUs," he explains. "By and large, in the gay white community, there is much more community and social support systems in place for people now than there were ten years ago. Although, clearly, we haven't made as much progress as we think by the very fact that when two men meet and are thinking of having sex, they are unlikely to discuss their HIV status. There is clearly stigma, but it isn't the same that was there in 1990. In the African American community, from that standpoint, they are five to seven years behind the gay white community. It was interesting to watch that many of the things BUS has gone through were like déjà vu for the agency. It started off as, 'Okay, we need to come together, but no, we can't have a sign on the door, no, we can't let anyone know why we're here.' And eventually became, 'Yes, we have a sign on the door and I'll tell you I'm a member of TPAN and a member of BUS.'"
"We have a really diverse clientele now," says Rick Bejlovec, who has worked for TPAN for seven years, the last three as its business director. "Yes, we still see gay white men, but we have a much larger group of IDUs and people in recovery. Our recovery group is one of our biggest now. These groups of people are where, collectively, the people who started this organization were fifteen years ago. Scrambling for information, not knowing what's out there, not knowing about services. The level of awareness of what HIV is and the services that are available is lower in the communities that we see now. But they want to learn."
"You need to read the mission statement."
He concurs with Hartke on the challenges that appear while moving to meet the needs of diverse populations. Bejlovec mentions that, "we have gotten a lot of criticism, even from some of the people who helped found this agency, saying we have betrayed the community we served. And I don't think we have betrayed anybody." He continues. "We have rolled with the changes, and have literally come to the people who now need the services, and not remained stagnant. I don't know if it's a racism issue or what, but there are people who think that we are not [serving] gay white men anymore. They will say that we have betrayed the community and betrayed our mission statement. I'm like, you need to read the mission statement. We're here to provide information and support for people that are living with HIV, people that are impacted or affected by HIV. We're here to empower people."
And people are people. Period.
"I came to TPAN as a client. I tested positive, and a year and a half later, I came to a support group. This was '90 or '91. I was getting the magazine in the mail, and there was a notice about volunteering, so I started volunteering in July '92, and soon after I was hired," says Jeff Berry who has been there ever since, making him the staff member who has been with the agency the longest. He has always worked on the journal, with responsibilities encompassing proofreading, maintaining the web site, distribution, and advertising.
"For me it's always been about the magazine," Berry states proudly. "We get letters from around the world, thanking us and telling us how it's helped them, and the change it's provided in their lives. We hear from a lot of prisoners, a lot of prisoners. I benefit a lot, it gives me a great deal of satisfaction to know that we're helping so many people, we're giving them hope. We're not making it glossy or sexy, but we're putting the information out in a way that's easy to understand. Sometimes funny, and not morbid."
He continues. "I think we'll be around for a long time to come. I think the magazine will always somehow survive, because there are so many people who depend on it and use it as a resource."
If Charles Clifton has anything to say about it, both the agency and the journal will be around for a long time to come. Clifton took over as editor of Positively Aware two years ago, and in July succeeded Hartke to become the new executive director. He has a full plate, two full plates really, but seems undaunted by the amount of work he faces. In fact, he seems to relish the prospect of a 7-day work week, filled with issues around programming, funding, editorial deadlines, human resources, and politics.
"It's my passion for the people we serve that has allowed me to work the way I have," Clifton explains. "And I feel that the community here and nationally respects the work that we've done, and from that perspective, it's given TPAN a renewed sense of respectability, credibility. It's created this energy in the agency and within myself that allows me to keep going at the level I'm going. So even though I'm juggling basically two full-time jobs right now within the agency, I have a committed staff that's willing to take on additional roles."
"We have to speak up for ourselves."
Consciously or not, Clifton is following in the advocacy footsteps of Michael Thurnherr, as described earlier by Mark Ishaug. "I think my greatest input on the journal right now is my voice as an advocate and as a policy person. I think in the past the journal has focused more on treatment and the science, and without losing that, I think I've given our readers the feeling of being advocates."
He plans to take that energy with him into the role of executive director. "I really want to position TPAN in Chicago and nationally as an agency that is interested in HIV policy, shaping it, changing it, and moving it forward. That's my mission."
And that mission has essentially remained the same for 15 years. People with HIV must be part of the process, as they always have been. Our voices, our input, our buy-in is critical, more so now than ever. "With the current political climate," Clifton says, "we need more people to become more politically involved in HIV and AIDS policy. We have got to speak up for ourselves. We have to take ownership of this disease."