It was over thirty years ago that the first case of HIV/AIDS was recorded in the United States, and the stories of how life felt for gay men at that time are beginning to fade.
The facts recorded in history books and the disease trajectory described in medical journals do not adequately express the humanity of that moment, or demonstrate the profound loss felt by so many. To tap into the impact the AIDS epidemic had on our community, we need the stories of people that were there—those that still remember the friends and partners lost, and the depth of the isolation and fear that touched every part of their lives.
The further we get from the heart of the crisis and the more these emotional stories fade, so too do the tales of what became possible when we joined together as a community. That is what made my recent conversation with Pride Foundation board member Wakefield so critical.
Stories like Wakefield’s create threads of empathy connecting generations within the LGBTQ community. They explain our emotional history as a unified people and show what’s possible for our future. These stories shake me to my core. They bring me back to a time before I was born—making my heart ache for the lives lost and the devastation faced by so many.
With over 30 years of experience working in the field of HIV/AIDS—and many more in his future—Wakefield still vividly remembers what it felt, looked, and sounded like to be engaged in this work from the beginning.
His own work in HIV/AIDS research began at the very start of the epidemic, at a time when medical services for gay men were provided in underground clinics or in urban areas by gay-friendly providers. The majority of these patients were closeted gay men—for whom going to see a family physician for STD tests not only risked outing them to their physicians, but also to the rest of their social network.
What made AIDS stand out from the other STDs being tested for at these clinics, however, was the visibility of the symptoms—obvious purple marks that appeared on people’s skin. Suddenly gay men who had been closeted for years were unable to keep their diagnosis—and thus their sexual orientation—private. It was almost as though they were walking around with a scarlet “A” on their chests.
Wakefield became involved in HIV/AIDS work in a pretty unexpected way; “I actually started volunteering to meet men somewhere other than bars,” he laughs.
That was what motivated him to begin volunteering at an underground clinic that provided STD tests to gay men in Chicago, called the Howard Brown Medical Clinic. At the time, there was a Hepatitis B epidemic in the gay community—with 1 in 5 gay men infected.
The doctors at the clinic were doing research for a Hep. B vaccine at the time they encountered their first case of AIDS, or GRID (Gay-Related Immune Deficiency) as it was called at the time. These same doctors began doing additional research on the new virus. Wakefield explains that they all made the mistake of thinking the cure would be simple and swift.
When this single case turned into an epidemic, the increase in deaths fueled perseverance and a whole new kind of commitment. Soon enough, their research was no longer merely a side project—it was serious enough to become their singular focus.
Wakefield explains, “We had collective grief, but we also had a new sense of emotional and intellectual work that we could do together to save our lives. It wasn’t about fighting the virus; it was about fighting to save our lives.”
A few years later, Wakefield became the first paid staff member at a nonprofit organization called “Test Positive Aware.” He explains that it was a group of 36 gay men that were HIV-positive who would photocopy all of their medical information, meet in a field house to share results, and then go back and report any new findings to their doctors. They were trying to save their own lives.
This anecdotal research made up the majority of the information available at the time. The sad reality is that national and local public health agencies were not responding quickly enough. Instead, treatment ideas and methods of prevention were coming from within the HIV-positive community.
“Test Positive Aware” was a brilliant group of men, but Wakefield remembers the job as being riddled with loss and pain. Six months after starting there, half of the board of directors that had hired him were dead. Wakefield explains that this contributed to what he sees as the biggest challenge in that moment: the mental health effects of such profound loss and fear.
“We were young. Most of us had never lost anyone, but then all of the sudden we started losing our lovers and friends.”
He went on to explain that not only were people trying to cope with a compound grief that was similar to living through war, but they also had to deal with the fear of losing their own lives from a disease whose transmission was not yet entirely understood.
On top of all this, the support systems of people were usually all but gone: “Many of us had been cast out from our biological base and were too young to have developed lifelong friends. So when people started dying, we couldn’t get the support we needed.”
There was also very little support from the general public. The lack of understanding about HIV/AIDS led many to believe that being gay meant that you also had AIDS, which resulted in an intense fear and stigma against LGBTQ people. This “Gay Cancer,” as it was referred to by many, including the media, was even considered by some to be a cure for homosexuality—resulting in the eradication of an entire group of people.
The resounding message from the entire country was that our lives and survival didn’t matter. Our community was cast aside in our time of need and left to fend for ourselves.
Wakefield came out to his mother during the AIDS crisis, and he can still remember the look of intense fear on her face when he told her.
“When I came out to my mom, she thought I was coming out to tell her that I had AIDS, and I said ‘no, Mom, I’m gay, but that doesn’t mean I have AIDS.’”
However, despite the constant pain and struggle that this time period represented, it was also a turning point for the LGBTQ community. Up to that point, Wakefield explains, there had been an evolving divisiveness in the LGBTQ community through changes in language and identity.
“In the beginning,” he reflects, “we’d all been ‘gay.’ Then women stood up and started calling themselves lesbians. Then bisexuals started identifying themselves separately as well. Different affinity groups were formed and, up until then, these groups had served us well. One of the things that happened as a response to the emotional pain of the AIDS crisis was that we recognized the need to get past those affinity groups and think about the true meaning of community. At the end to the day, there were leaders who had enough of a nuanced understanding to stand up and say ‘we all have to work together.’ The challenges that we all faced were universal and therefore the response had to be universal. I think that Pride Foundation is one of the groups that did that well.”
What changed was the strengthened notion of gathering together, working together, and creating new, powerful examples of what could be accomplished by a group of talented, intelligent people.
Wakefield explains, “It gave people a new integrity to gather around other LGBTQ people—not just helping humankind in general, but our own community. It was not just being a candy-striper at a hospital. It was a whole new level of altruism and personal pride.”
Looking back on all this now is obviously heavy for Wakefield, who thanks me for giving him a reminder of what things were like back then and how much has changed. Now working in external relations at the Fred Hutchinson Cancer Research Center, Wakefield sees exciting opportunities on the horizon in the battle against HIV/AIDS.
“Even 5 years ago, no one had been cured, so no one would really talk about it,” Wakefield comments. “Last year, for the first time, when we looked at the epidemic on a global level, we saw a reduction in new infections and science showed that it’s possible for people that are infected with the virus to take medicine and live with the same life expectancy as HIV-negative people…We can now manage the disease, protect people from getting it, and we are on the cusp of curing it in people that already have it. We’re not there yet, but we’re getting there.”
As for the future of the LGBTQ movement, Wakefield is equally optimistic, especially when he notes the dramatic changes we’ve seen over the past 30 years.
When he was young, his parents’ worst nightmare was having a gay child: “They didn’t understand integrated sexuality; the only gay people they knew of were broken and in pain. Now, some parents think that having a gay kid may be positive—like maybe they’re smarter, more creative, or more sensitive. I know it’s not any of that. I just think it gives you a deeper insight into humanity.”
As for Pride Foundation’s role in the movement, Wakefield explains that in order to further advance equality we must continue to understand diversity, privilege, and need as complex issues and encourage other organizations with similar values to share their stories. That is what will allow our history of humanity, compassion, and community to live on.
When we hold those stories dear, give them the attention they deserve, and use them to connect people of different generations within the LGBTQ community—much like Wakefield and myself—the result is emotional, impactful, and profound.
Katelen Kellogg is Pride Foundation’s Communications and Outreach Manager. Email Katelen.