Utah AIDS Foundation

As former director of AIDS Project Utah, Richard Starley was one of Utah's first leaders in the organized fight against HIV. A Salt Lake native who also lived in San Francisco, Starley is one of just a few local community members with personal knowledge of the epidemic's beginnings in Salt Lake City.

"I was in San Francisco when AIDS became an issue," he says. "I was living in one of the epicenters of what was happening in the gay community and a couple of my friends died while I was still there."  Already fully aware of the devastation wreaked by AIDS, Starley came back to Utah in late 1984, surprised to find that Salt Lake already had an AIDS service organization - two, in fact: the Salt Lake AIDS Foundation (SLAF) and AIDS Project Utah (APU). "For some reason I didn't think there would be AIDS in Salt Lake," he says, "or at least that anybody would be doing anything about it."

AIDS Project Utah was a client-service organization, modeled after San Francisco's Shanti Project, while the slightly older Salt Lake AIDS Foundation was created for community education.  "[The Salt Lake AIDS Foundation] had actually been set up by [University of Utah health professor] Patty Reagan," Starley says.

Raising awareness about HIV that early in the epidemic was exceptionally difficult because of the relative rarity of a positive diagnosis and the shame associated with one. "When I got involved there had been 32 cases diagnosed in Utah, and some of the folks who had been diagnosed early were people from blood transfusions and hemophiliacs, so some of them were very quiet back when it was called GRID [gay-related immune deficiency]."

Because most people died within 12 -18 months of diagnosis, Starley estimates that about 25 of those 32 diagnosed had already died when he became active in the movement. "Most people found out they were HIV positive when they became symptomatic, so you got the diagnosis that not only are you HIV positive, but you also have AIDS. And then, people would die within a few months."

The Shanti model used by APU centered on a theme of emotional support, sometimes now called the "buddy system," where every APU client received personal, one-on-one assistance. "That was a big, important piece of providing direct support, volunteer-to-client," Starley says. "[Volunteers] had to go through a pretty intensive, full-weekend training - about 40 hours - to become a buddy." In addition to one-on-one support, APU offered support groups, an education hotline, and a speakers program for community groups.

In the mid-80s, there was a huge stigma attached to AIDS and HIV. "I remember a lot of speaking engagements we would go on where the audiences were very hostile and didn't want to hear from us, didn't want to know anything," he says. "Tom and I - my friend Tom was diagnosed at the time - we did some speaking engagements out in Tooele, of all places, and in Wendover and Dugway and Grantsville, and people in the audience would actually say to him 'You should be quarantined. You should be put on Antelope Island and no one should come near you and there should be no services.' They had never seen or met someone with HIV and that's what we were talking about, reducing the fear, reducing the prejudice. That was, for a lot of people, their first face of AIDS."

Community education was a major focus of APU's speaking engagements. Part of the HIV stigma came from ignorance about transmission; people were afraid of becoming HIV-positive from social contact. "The fear was rampant at the time that you could get it from a drinking fountain, from a cup . . . stupid," he says. "I would take this dog-and-pony show across the state and talk to welfare workers because people who were coming in and identifying themselves as having AIDS were being very mistreated. [Workers] would say, 'Here's a pen, sign the document,' and then they wouldn't touch the pen again or they'd say, 'Oh, you can keep the pen.'"

While the population at-large was skittish when it came to AIDS, the gay community was supportive from the very beginning. "People understood what was going on, and they were fearful of it," Starley says. "This was the time of sort of a clone look, so you knew if somebody became sick because they started to look sick. There weren't a lot of treatments out there - AZT was about it."

Starley also fought for support from an unlikely source: the Catholic Church. "Nobody knew because it was such a closeted issue, but one of the very first people to die of AIDS in Utah was a Catholic priest. I was really appalled that the Catholic Church wasn't really doing anything, [but] there were some very good nuns and priests helping with chaplaincy, and Holy Cross had really stepped up and was the only hospital where people with AIDS were welcome."

But according to Starley, who was born Catholic, the leader of the Salt Lake Diocese, Bishop Weigand, wasn't doing anything, so Starley wrote the Bishop a letter. To Starley's surprise, Weigand wrote back. "He sort of said 'Put your money where your mouth is; come talk with us and tell us what we should be doing.'" Weigand ended up asking Starley to chair the first AIDS task force for the Roman Catholic Church in Utah. "I really appreciated his willingness to at least start a dialogue and to allow me, as an openly gay person, to challenge him on some issues," Starley says. "He was stuck in his own stuff in terms of being a Bishop and having to be Catholic. He couldn't talk about condoms and all that, but I have to credit him: I think he did a lot of good to open the doors for Catholics to understand what was going on with AIDS."

Like most people working in the AIDS movement in the mid-80s, Starley's reasons for getting involved were personal: "We were in it without any choice because it just hit us. It was all about our friends dying and there was such an emotional involvement to the work; all of a sudden, I found several of my close friends diagnosed with AIDS. I felt like I really needed to do this." One of the first friends to become a casualty was Paul, another Salt Lake native still living in San Francisco after Starley had come home. "Paul, I guess, didn't know he was sick. One day he just disappeared and nobody knew where he was. Turns out he had gotten on a plane in San Francisco and flew to Salt Lake and ended up here at the airport totally incoherent, no idea who he was, where he was, why he was here. Something in him, I guess, was trying to take him home. They finally identified him, but he had a form of meningitis that immediately put him in the hospital. He died two days later. It was really difficult to just be told your friend is dead. I didn't even know he was sick; there was no time to even visit him. And so I still visit his grave. He's buried up in Eden, Utah, of all places. After living in San Francisco for the last 10 or 15 years of his life, to be buried up in that little cemetery is really kind of weird, but . . . that's where the rest of him is."

Throughout high school, Starley had a group of friends who ended up coming out to each other when they were all 21. "We were late bloomers," Starley laughs. "We didn't even know there was such a thing as gay people, but we all sort of gravitated toward each other in school and then as we realized we were gay, we started going into Liberty Park, which was a big meeting place at the time, and to the bars, and found other folks." By the time AIDS arrived, there was "a good group of 8 or 10 really close friends that had been friends already for 10 or 15 years." Of that group, only one person besides Starley is still alive. Everybody else has died from AIDS. "We always used to joke that we were all going to grow older together," he says. "Well, we didn't. I'm growing old and they all died before they were 40."

In a ten-year period from 1984-94, Starley not only lost many of his longtime friends, but also friends he made through his work at APU. "There were probably another 15 or 20 people who died that I used to go visit in the nursing homes and the hospitals. It was a very intense period for me because in retrospect, 20 years later, it seems like I thought if I could work harder, and if I did more, then my friends wouldn't die. This was my response to people literally dropping dead around me. There was a huge survivor's syndrome that I had for a long time. Maybe I still have it."

With his twenty years experience fighting HIV and AIDS, Starley isn't surprised at the recent increase in HIV infection. "I think people get tired of precautions; it's the same old thing," he says. "And it's amazing to me that most people don't know anybody who's died from AIDS. I mean it just blows me away. There are a lot of young kids that are coming out who don't have any of this knowledge. They don't know, they've never experienced anybody dying from AIDS. And people who die from AIDS today don't really die in the same way. The end result is the same, but it's not here-one-day, gone-the-next, or a very rapid 30 or 60 day decline that's very visible and painful."

"There's a part of me that still mourns the loss of all my friends, and there's a part of me that feels like this is still a crisis for the gay community. I'm surprised how much it is not seen that way anymore; so much of the news is not about AIDS, as if it's just a given now - we have to live with AIDS, it's just part of our community, but we don't really have to talk about it."
 
Even though it can be difficult, Starley says it's nice to see people remembered. "There are not a lot of gay men my age left in the community and I really feel very alone a lot of times when I go out, if I venture into a meeting or a community gathering. There are lots of young people and some older guys in their 60s and 70s, but this whole 40-55 age group, a good chunk of us died."

Starley also says that everybody - particularly every gay man - should know somebody who has AIDS. "It's really an identity issue; people lose connection to their history and all the suffering that went on.  AIDS was a big issue that sort of died away, but it was growing in other places when it didn't have all that media attention. It's going to come back, another wave that's going to hit us. It's not over."