October 28, 2013
What is the legacy of the "AIDS Generation" -- gay men in midlife, people who lost friends or lovers to the epidemic, and activists, caregivers, and service providers on the front lines in the years before effective treatment -- and what are their needs and priorities today?
These are questions Jeff Leiphart, Ph.D., clinical services director at San Francisco AIDS Foundation, put to gay men in our community -- and the answers are now informing the new 50-Plus Network for older gay and bisexual men. They are also among the questions to be explored at our October 23 public forum, "What is Our Story? Perspectives from the AIDS Generation." The forum will continue the conversation about what this community wants and needs, and what it has to offer.
In this Q&A, Dr. Leiphart shares his own story from the front lines, and his perspective on what's next for older gay men.
As a gay man in the Castro during the early days of the epidemic, what's your story?
I was right in the middle of it. I got here in 1977, and at the time, there was a huge influx of gay men from around the country who were feeling outright discrimination and lack of safety for being gay. They fled that to come here; the word on the street nationally was, "Go to San Francisco!" The Castro started as a family neighborhood that was pretty run down, so gay men here did what gay men do all over the country: go to a city, find the cheap, run-down area where you can buy an old place, and fix it up.
The late '70s saw the flourishing of a gay bank; all of the tellers and officers were gay, and gay people were coming in, giving their gay money to the gay bank. There was the Gay Men's Chorus, the San Francisco Gay Freedom Day Marching Band and Twirling Corps, the Gay Police Officer's Association, the Gay Business Guild, gay professional guilds, artistic groups. The community was really starting to mature.
And then I remember reading in the New York Times in June of '81, "Gay Men Get Cancer." And slowly, step by step, I would hear more, and it was getting closer and closer: A friend told me about his friend in New York getting sick, then about a friend in L.A. Then I heard about people in San Francisco getting sick, and then a friend of mine got sick. I remember thinking, "Death is marching toward us." You could almost hear it getting louder and closer.
How did all that community-building change as the epidemic took hold?
When people realized how widespread this new illness was becoming, they turned to the doctors and the government for help. Strike one, strike two. The doctors had no clue, and they weren't all very good at listening. And the government wasn't listening -- this was Ronald Reagan's administration -- so we realized, "Help is not on the way; we have to save ourselves."
We had to build our own service organizations. Very early, the Kaposi's Sarcoma Foundation started on Castro Street; it would later become San Francisco AIDS Foundation. Another organization was Kairos, which provided support to caregivers who were exhausted from caring for their dying friends and lovers. So much of the energy and effort that had been going into building the gay banks, bands, guilds, and artistic groups was shifted to building support for the sick and dying.
There is a conversation today about where that community would be if AIDS hadn't happened. What if all those people were still alive and had grown into powerful positions? Where would all that be today? But the initial community-building paid off, because the organizational skills were there when we needed them.
What are some of the lasting legacies of those early days?
AIDS provided the "perfect storm" to allow patients to instruct physicians on how to do a better job. Somebody with Kaposi's sarcoma would go to the doctor armed with research they'd gleaned from the library; docs weren't used to that.
It turned into a phenomenon, because most diseases hit isolated individuals -- for example, back then, people with cancer didn't have a natural way to come together -- but when AIDS hit this already organized community, then there could be a community response to it. And out of that community response came all the ACT UP organizations and all the challenging of medical and research institutions.
I think today many people who lived through those days are like war veterans; there was such solidarity then, and mobilization, and they're not finding that anywhere today.
Is that something the 50-Plus Network hopes to provide? What is the new program about?
When we started doing focus groups for 50-Plus, almost universally we heard guys say, "We're not here asking for you to give us help because we have some kind of pathology and we want you to fix us. We're not interested in that model. What we want is to move forward in a positive way -- but none of us individually knows how to do that. We're looking to this group to provide some structure and guidance."
There are four components to 50-Plus. The first is processing psychologically the transition from youth to adult to aging adult. We meet twice a month and focus on specific topics -- say, sex. We'll ask, "What is the role of sex in your life, and what is its meaning for you -- then, and now that you are aging? "Then" and "now" became our template for processing a variety of issues. So in this way, it's a structured support group around issues of aging.
The second part guys wanted is access to a social group that's more than going to a bar and chatting; they wanted a meaningful social group. So we helped them put together a mailing list for a network for social connection. It started off with a bang: Someone posted, "I've got ten free tickets to the Diana Ross concert. First ten people who say 'yes' get to go with me!"
The third thing component is community projects. As older gay men, they have learned a lot about life, and they want to share their wisdom and make a contribution to younger generations. We're just on the cusp of starting that. Younger people aren't necessarily aware of what gay men went through, that there were soldiers who died to make it possible for them to have acceptance and rights today.
The fourth part is about reducing social isolation among older gay men. People who are socially isolated are at risk for sinking into depression, and for decreased immune function and increased health problems. So we're training volunteers to reach out to people who are socially isolated and connect them with other folks, either by bringing social activities to them or by getting them out and about.
What has the response been so far?
Terrific! We're still developing, but we have about 50 members on the mailing list. One man who came to 50-Plus told us, "I wouldn't be here -- I never leave the house -- but my friend hammered on me until I finally agreed to come just to shut him up. But now I'm glad he dragged me here."