What Is Our Story? Perspectives from the AIDS Generation
What is it like to be part of the “AIDS Generation”—gay men in midlife, women and men who lost loved ones to the epidemic, and activists, caregivers, and service providers on the front lines in the 1980s and 1990s—and what are their needs and priorities today?
A diverse panel and audience addressed these and other questions at San Francisco AIDS Foundation’s public forum, “What Is Our Story? Perspectives from the AIDS Generation,” held October 23 at the San Francisco LGBT Center. The event was part of the foundation’s Real Talk series, designed to host timely, interactive dialogs and exchange knowledge and resources around topics at the forefront of discussions in our community.
The forum also served as a “listening session” for foundation leadership and representatives of other local organizations, to foster a better understanding of what members of the AIDS Generation—including long-term HIV/AIDS survivors—want and need, and how they can help strengthen existing programs and shape new ones.
Speakers included Cleve Jones, co-founder of San Francisco AIDS Foundation and founder of the AIDS Memorial Quilt; Mary Lawrence Hicks, nurse practitioner at San Francisco General Hospital’s Ward 86; Sister Vicious Power Hungry Bitch, an original founder of the Sisters of Perpetual Indulgence; San Francisco-based psychiatrist Don Schwarcz; HIV educator and longtime activist Matt Sharp; and Steven Zetlan, instructor at Laney College and Bridgemen volunteer. The discussion was moderated by Hank Plante, an Emmy-winning reporter, anchor, and political editor with San Francisco’s KPIX TV for 25 years and one of the first to cover the AIDS epidemic on television.
Foundation CEO Neil Giuliano opened the forum by honoring those on the panel and in the audience who are themselves part of the AIDS Generation. “Whether you marched in the streets, whether you were delivering meals, whether you were holding someone’s hand in the middle of the night, all of the folks who were involved with HIV/AIDS in this community, from the darkest days until today, you have our greatest respect and admiration,” said Giuliano. “Because of you, because of the work that many of you did, we now live in a drastically different time with regard to HIV/AIDS.”
The event’s key questions and themes, personal perspectives from the panelists and members of the audience, and resources available in our community are summarized here.
What is our story? What does it mean to be part of the AIDS Generation?
“I found out I was positive in 1988, so I always tell my training classes that I’ve been living about half my life with HIV.” —Matt Sharp
Moderator Hank Plante started the conversation with questions about the experience of the AIDS Generation, and the personal impact of the epidemic. “I hear my mother’s generation talk about being shell-shocked from World War II. Do we ever really fully understand the war that we’ve been through, the toll that it takes on us?” he asked.
Panelist Steven Zetlan recalled that in 1981, when he was a college freshman in college, his concerned mother sent him a newspaper article with the headline, “Rare Cancers Seen in 41 Homosexuals.” Don Schwarcz remembered the article vividly: “I was in medical school in 1981, and in the spring of that year I developed big swollen lymph nodes in my armpits. The doctors couldn’t figure out what was wrong with me….Then that article came out, and I literally took that article and ran to my doctor’s office,” he said. “I knew then that was the start of something that I was going to be a part of.”
Sister Vicious’ story began the same year. “In 1981, I’m walking down Castro Street with a friend and he looks at my neck and he says, ‘What’s that on your neck?’ ‘Well, I don’t know. It’s a bump.’ ‘Oh, it’s probably some incurable disease!’ And we’re laughing and walking home, like that’s impossible. By April my lymph nodes had exploded; I had one under my arm the size of an orange.” Tests at an emergency-room visit were inconclusive, and she realized, “I have to figure this thing out myself.”
Offering another perspective, Mary Lawrence Hicks explained how she first became engaged with the epidemic in 1985, after she moved to New York for nursing school and found there was plenty of work for people willing to care for those with AIDS. “People didn’t know how the virus was transmitted, and there was a lot of fear among service providers about working with people who were infected.”
Her first job was at St. Vincent’s Hospital, “delivering meal trays from the hallway to the room—because they were being delivered just out onto the floor, in the hall.” Working with people who were fighting for their lives galvanized her. “From the moment that I delivered that first meal tray from the hospital hallway to the person’s room until this day, seeing patients in the clinic, I love what I do.”
Don Schwarcz also worked closely with people living and coping with HIV and AIDS. After years of seeing psychiatry clients in San Francisco and helping them deal with issues around death, grief, and loss—while dealing with the same issues himself—Schwarcz found his own condition deteriorating. “I finally came to the conclusion that my time was running out when my T-cells fell below 200,” he said. “I left my career and went out on disability expecting that I only had a couple years to live. And here I am.”
But those years had taken their toll: Schwarcz experienced what some community members are now calling “AIDS survivor syndrome.” After combination antiretroviral therapy became available in the mid- to late 1990s, death rates slowed and “the worst of it seemingly had ended,” Schwarcz explained, and he tried to forget the trauma of those decades. “But the next 12 years or so were spent in an ever-spiraling downward trend of depression, anxiety, loneliness, isolation, feeling guilty, inadequate, low self-esteem. It just got worse and worse and worse, like I had no place in the world, nothing to contribute,” he shared.
An audience member spoke up about his own experience getting older with HIV: “Aging in America, aging in the gay community, and aging with HIV: I called it the ‘triple whammy.’ It’s just now that I’m realizing how incredibly depressed and confused I am, at 61. This is the hardest period I’ve ever had. Not when I was going through the battle, but after.”
Matt Sharp offered his take. “One of the things that strikes me, as an educator, is that people don’t know the history,” he said. “And it’s very frustrating to me as part of that history and having been involved in the fight against AIDS from the early, early days.” Sharp’s comment aligned with a sense among the panelists and audience members that there is a divide between generations in the community.
Steven Zetlan agreed: “In those early days, AIDS was something that you couldn’t avoid. You were seeing it in the streets, you were seeing people with walkers, you were seeing people covered with lesions, and it was a part of your life. You couldn’t not acknowledge it, even if you wanted to,” he recalled. “And now, it’s very, very different. Thank god people are able to take medication and live a normal life. But at the same time, I think that creates a way for many people to ignore what’s still going on.”
“It does feel like we were in a war then,” Hicks said. “It’s not that the war is over, but the horror of it is hard to convey to someone who hasn’t been in it. I think as much as we try, with education and images and documentaries and movies about that time, ultimately it is very hard to convey how it felt.” Sharp added, “One of the things I tell people, to get a sort of metaphor for what we went through, is to think about your social network—now we think of Facebook—and think of it being just decimated. That really shocks people.”
“We were all too young to lose our friends,” Plante agreed. “It’s so hard to capture the enormity of the loss,” added Zetlan. “One of the few things that can really get that message across is the project that Cleve Jones started”—the AIDS Memorial Quilt, a community art project Jones founded in 1987 that today memorializes more than 80,000 people who died of AIDS-related causes. “You can’t even put all those quilts together anymore in one spot…and young people have never heard of it. The enormity of the loss that it represents is so hard to communicate to people. How do we do it?”
Audience member Steven Tierney, professor of community mental health at California Institute of Integral Studies, responded: “I’m a volunteer at Magnet”—San Francisco AIDS Foundation’s sexual health clinic for gay men—“and on Saturday, I got to spend time with a young man who found out, to his great surprise, that he was HIV positive. The impact on him is the reason that we all need to be here and keep doing the work, so that Magnet can continue to exist and so we as a community can welcome him to the resources that weren’t available 31 years ago.”
What have we gained from being part of the AIDS Generation?
“As sisters, we’re really good at transforming challenges into passion and creativity, and that’s what we did when this epidemic came along: We got out there and tried to solve the problem. It’s what we do. And it added a lot of meaning to our lives—and still does.” —Sister Vicious Power Hungry Bitch
After sharing stories of what members of the AIDS Generation had lost, the panelists turned to what they had gained from their experiences throughout the epidemic.
“Without the activism that was created as a response to AIDS and HIV, I think that the gay community might be in a very different place,” observed Zetlan, noting that today’s advances, such as marriage equality and gay people’s right to serve in the military, might be owed in part to AIDS activists. “I wonder if this would have all happened so rapidly if we hadn’t had that experience of fighting together for something we wanted.”
“In the early ’80s we felt like, well, a decade of work building a gay community is all going to disappear, this is the end of it,” added Sister Vicious, “and along came the new generation with ACT UP and transformed it and gave us hope. Every single time that we have a challenge, that’s what happens. We use our creativity to succeed.”
“Absolutely, the streamlining of the approval process for medications at the FDA would not have happened without AIDS activism,” agreed Hicks. “But also I think our community has gained wisdom and strength, and there’s been a burst of creativity that has come from the struggle itself. We have been bonded to one another. I think that men and women in the community have come together in a way that we might not have without a crisis like this.”
Sister Vicious offered examples: “There was a lot of racism and sexism—not that there isn’t some today—in the ‘Castro clone’ gay community of the ’70s. And that really got challenged when we started getting sick, and when we stepped up as care providers. We really had to ask, ‘What is our purpose in life, and what is crap that we need to get rid of?’ and a lot of it was sexism and racism.”
Plante commented, “You know, Tony Fauci, who still runs NIAID, I’ve heard him say many times that there was a time before ACT UP and there was a time after ACT UP—and he wasn’t just talking about HIV, he was talking about in medicine and at the CDC and at the NIH.”
A member of the audience agreed, sharing that she started at Ward 86 in 1982 as a brand-new nurse and was grateful for everything the local activists gained. “It completely changed the whole health care system from the ground up, in so many ways,” she said. “I am so grateful, because we have hospice, we have improved Medi-Cal, we have coverage for drugs, we have all kinds of stuff that has bloomed solely out of what happened in San Francisco in the AIDS epidemic.”
“We also started patient empowerment,” emphasized Sharp, a longtime HIV treatment advocate. At a time when doctors and researchers knew little about the virus that was causing AIDS (and how to fight it), many people with HIV educated themselves, studying virology, immunology, and pharmacology and tracking developments in AIDS research.
“We learned how to take care of ourselves,” Sharp explained. “We learned everything we could about the science behind HIV and how to take care of ourselves—because, remember, many of us didn’t have any support or any family, and we learned all of this, not only to empower ourselves to change things but to take care of ourselves.”
What do we need, going forward?
“We of this generation need to be much more assertive, much more. I do not want to be forced out of my city. I want to know that I’m going to be looked after. I don’t want it all to have been in vain.” —Cleve Jones
The discussion shifted to focus on current needs, with longtime AIDS activist and labor organizer Cleve Jones speaking passionately about the challenges his generation faces—chief among them, an uncertain future for people aging in an increasingly expensive city with a cutthroat housing market.
“I’m better off than a whole lot of people, and I know it,” Jones acknowledged. “I’ve got health insurance and I have a job. I’ve also got an apartment I can’t afford, and when the landlord figures out how much he could make by going condo, then I’m out of here.” Saving for older age and retirement just wasn’t the reality for many of Jones’ generation. “During the period when I was supposed to be making money and saving money and doing all of that, I was in a war zone,” he said.
Moderator Plante added, “One of the biggest changes I’ve seen in this city is that 25 years ago, somebody with HIV could work part time—because they didn’t have the energy to work full time—and still live here. I don’t think you can work part time and live in San Francisco anymore. This is an HIV issue.”
“When your housing is disrupted or you are evicted, oftentimes you’re not compliant with your meds, you can’t access services, your whole life is disrupted,” responded Sister Vicious. She called on San Francisco AIDS Foundation and other local organizations, as well as the city’s political leaders, to make housing a priority. “We really need housing protections right now.”
Jones mentioned that his Facebook posts about housing costs and recent evictions have garnered harsh comments. “It’s amazing how cavalier and cold and cruel gay men can be to each other,” he said. “So I’m in this predicament because of ‘bad planning’? Really? And, ‘Just go someplace you can afford.’ And where would that be?”
An audience member who grew up in San Francisco sympathized, and shared how fortunate he is, for multiple reasons, to have inherited his parents’ house: “I know damn well, knowing the income that I make, that I would have been forced to move if I were renting—and I don’t see myself living in the Midwest, where housing is cheap and gay bashing is frequent.”
Another member of the audience observed, “There’s a kind of socioeconomic Darwinism that’s sweeping through San Francisco. It’s almost like, if you can’t afford it, you don’t deserve to be here.” To which Sister Vicious replied, “We built this city. We built this community. So we have paid our dues and we deserve to live here.”
In addition to housing, panelists and audience members identified a strong, united community as an unmet need today, as the AIDS Generation grows older and faces a future that many people never expected to have. “In ’94, ’98, I looked ahead to the future and I thought we would have more compassion around our elders because of the pandemic,” shared one audience member. Instead, “it’s been like pulling teeth to get peer support.”
Zetlan offered his perspective as a member of Bridgemen, a volunteer program from Stop AIDS Project and San Francisco AIDS Foundation for gay and bi men. “Gay men in their 30s and 40s and 50s feel so isolated, so disconnected from any kind of community. They feel disrespected. They feel dissed. They feel that they’re not being looked at. They feel totally invisible,” he explained. That lack of community has real impacts on health and well-being, added Sharp: “There are a lot of very lonely, very isolated people out there. And when that happens, that’s one of the reasons why people start being a little bit more careless and not taking care of themselves.”
The power of community rang true to Schwarcz, who explained that he found himself struggling after two decades of not dying from AIDS. “I tried everything in my power to pull myself out: therapy, antidepressants, adopting kids—I mean, seriously, everything, and nothing worked,” he shared. It wasn’t until he joined Let’s Kick ASS, a new grassroots organization working to address AIDS survivor syndrome and meet the needs of long-term survivors, that his trajectory changed. “Happily, I pulled myself out, with the help of a very loving community of peers,” he said. “My life has taken a dramatic 180-degree turn since then.”
Let’s Kick ASS founder Tez Anderson was in the audience and offered his take. “We need mental health services to focus on the post-traumatic stress that most of the people in this room who are over 50 live with every day,” he stated. “But what we really need more than that is us coming together again.” Anderson explained that one goal of the new organization is to reunite the survivor community and build on its strengths: “We all had years and years of grief and strife and angst and terror, and we’ve come through it. How can we celebrate the resilience of this community? I believe we should celebrate how far we have come, instead of focusing on what we’ve lost and what we’ve given up. Let’s focus on how we can make these next 20 or 30 years the best they can possibly be.”
Sharp agreed and commented that, in addition to comprehensive health care to treat both HIV and aging-related illnesses, “I see the need for the rebuilding of a strong compassionate community where we take care of one another.” Hicks agreed. “People just get so tired, they feel isolated, they stop taking their treatments, and they die,” she said. “How do you help give hope to these folks so they take their medications and they live on? I think it’s through this kind of movement.”
So what will it take to effect these changes? “I’m encouraged right now by the crowd in this room,” said Sharp. “I’m encouraged by what I see with the Let’s Kick ASS movement, which I believe is the new movement of long-term survivors. We’re coming together to try to create some solutions around these problems—and we need people. That’s what it’s going to take.”
The forum concluded with representatives from relevant local groups presenting their programs and joining the audience for a miniature “health fair.” Below are links to these valuable resources. Use them to connect with community, find services, and write the next chapter for the AIDS Generation.
- Let’s Kick ASS: This grassroots movement of long-term survivors honors the experience of living through the AIDS epidemic, while also drawing on survivors’ resilience to address isolation and envision a new future.
- Alliance Health Project: Individual therapy and group counseling services, as well as support for people living with HIV or trying to stay HIV negative. HIV testing is also provided.
- Openhouse: Housing assistance resources, direct services, and community programs for San Francisco Bay Area LGBT older adults, as well as support for caregivers.
- The Mayor’s LGBT Aging Policy Task Force: With subcommittees focused on housing, legal issues, and health and social services, the task force advises the San Francisco Board of Supervisors on the needs and concerns of LGBT seniors.
- Shanti Project: A continuum of services for people living with HIV/AIDS, including treatment education, client advocacy to ease navigation through the health care system, peer support groups, individual health counseling, and workshops.
From San Francisco AIDS Foundation:
- Positive Force: Educational workshops and other events, one-to-one peer counseling, and social activities for HIV-positive guys who live, work, or play in San Francisco.
- Bridgemen: For gay and bi guys in their 30s and 40s, Bridgemen volunteers organize fun and relevant community service projects that provide leadership opportunities, build friendships, and give something back to the community.
- Magnet: Free HIV testing, screening for other sexually transmitted infections, and hepatitis A & B vaccinations, along with an art gallery and community center—all in a welcoming, safe space for gay and bisexual men.
- 50-Plus Network: This still-developing new program for older gay and bi men, HIV positive and HIV negative, combines social connection with supportive meetings around issues of aging. Learn more in this Q&A with program founder Dr. Jeff Liephart.
- www.betablog.org: Your source for resources and science updates on HIV prevention, treatment, and living well with the virus—including aging with HIV.