Phill Wilson is one of the best-known HIV/AIDS activists/educators around the globe.
The Chicago native was the co-founder of the National Black Lesbian and Gay Leadership Forum and the National Task Force on AIDS Prevention. He has been involved in the founding of a number of other AIDS service organizations and community-based organizations, including the Chris Brownlie Hospice, the AIDS Healthcare Foundation, the National Minority AIDS Council, the Los Angeles County Gay Men of Color Consortium, and the CAEAR Coalition. Most famously, Wilson is the founder and former President and CEO of the Black AIDS Institute—a think tank whose mission is to stop the AIDS pandemic in African American communities.
With this year marking the 40th anniversary of the official discovery of HIV, Wilson talked with Windy City Times.
Windy City Times: You've been around the world so often that I don't think many know of your Chicago roots.
Phill Wilson: Yeah; I'm originally from Chicago, and was recently there on family matters.
I was born in Cook County Hospital and grew up in Altgeld Gardens until I was 10 or 11. Then my family moved to south suburbs and I went to high school in Harvey, Illinois. I went to Thornton Township High School and then to Illinois Wesleyan University. Even now, I own a house in Bronzeville—so I've never given up my Chicago roots.
Also, an ex of mine, Mark Schools, was an editor for Windy City Times many years ago. He's currently the editor-in-chief of BuzzFeed.
WCT: Could you take our readers back to the day when you discovered your status?
PW: Sure. I think some people refer to the [long-term] survivors as "AIDS pioneers."
With my personal relationship with HIV, there are two stories. One happened in 1981. I came out in 1980, and my first sexual encounter turned into a relationship that lasted 10 years—until my partner died of HIV in November 1989.
In the late summer of 1981, he was told by his doctor that he had swollen lymph nodes, and he provided an update on a disease that was primarily impacting gay men in New York and California that somehow involved swollen lymph nodes. I discovered that I also had swollen lymph nodes at the time. As it turns out, I was probably experiencing acute infection; my partner was probably in a state of chronic infection. They took biopsies of the nodes, and the [results] came back abnormal—but, at the time, we had no idea what that meant.
Shortly thereafter, we moved to Los Angeles in the winter/spring of 1982, when a serious conversation of this new epidemic was just starting. We were pretty confident at that point that we were infected—and that was the catalyst of my involvement. In 1985, my partner got sick with AIDS; he was diagnosed by having a low T-cell count.
In 1986, they developed the test, and that's the second story for me. I tested positive at that time.
WCT: At that point, in the '80s, HIV/AIDS was seen by many as a death sentence. What was going through your mind after being diagnosed?
PW: Well, at that time, there were HIV, ARC [AIDS-related complex] and AIDS. The conventional wisdom was that ARC wasn't necessarily a death sentence, but that AIDS was. So I just wanted to put things into context.
But having said that, I certainly did feel like it was a death sentence. I was living with someone who had AIDS, and I saw what was happening to him. I anticipated that I would get AIDS, and my doctors told me that I probably had six months to live and that I should get my affairs in order. But—unfortunately or fortunately, depending on your perspective—we were on the front lines at that time, so we really didn't have time to think about it. Some people have a hard time understanding that, but when you're on the front lines, you're fighting; it's like a war when the guy next to you is killed, but you don't have time to react because the enemy is still coming at you. From getting that information, I literally had minutes before getting home and taking my partner to the hospital; then I had to get home and prepare for a memorial service the next day.
WCT: I remember speaking with the writer Edmund White and he said that, at one point, he was going to hundreds of funerals. I can't even fathom what that would've been like.
PW: Right. There were years in my life, actually, there were [periods] that went by when someone I knew found out they were positive or had AIDS, had been admitted to a hospital or had died. Those often happened on a weekly basis—but sometimes on a daily basis.
WCT: I came across a quote attributed to you: "I needed to focus on the living…"
PW: "…because the dying was going to take care of itself."
WCT: So is that what kickstarted your activism, in part—that realization?
PW: Hmmm … no. I was involved as an activist before that. For me, it wasn't a question: My community was under attack, my lover was under attack and my family was under attack. It is an organic reaction. It wasn't particularly heroic; it was just organic.
WCT: Black people continue to be affected disproportionately by HIV/AIDS. What can the community do to reverse that?
PW: One is to take ownership of the disease. It's not only our disease, but it is our disease. Also, make sure we have the information—get the facts and understand what's going on. Then, people need to take action and take control.
So those are three things people need to do. I think, in some ways, we are doing it and that's how we're going to get out of it. No one can save us from us but us. Also, the days of waiting for a savior to come and rescue us have to be over.
WCT: So being proactive instead of reactive is key.
PW: Yes—but it goes even deeper than being proactive. I think understanding that the virus [couldn't] give a hoot [is important]. This virus isn't who we are, although it's a part of who we are.
WCT: What similarities do you see between the HIV/AIDS pandemic and the COVID one?
PW: Everything. It is easier to talk about how they're not similar. COVID-19 has a much, much greater footprint than HIV. Obviously, they're both viruses—the coronavirus is airborne, while HIV is not. So the science at the epidemiological level is different; but, on the psychosocial and economic levels, they're the same. There were miscommunication and misdirection regarding both, and they're were levels of stigma and political manipulation. And the solutions involved advances in science and community mobilization.
WCT: Are you surprised that there's no HIV/AIDS vaccine, especially with those having been developed for COVID-19?
PW: I'm not surprised, although I'm disappointed—and I'm not surprised that vaccines were found much, much faster for COVID-19. People were able to develop the COVID vaccines because of the groundwork and sciences that had been created because of HIV. Were there no HIV, there'd be no coronavirus vaccine. So that's number one.
Number two: As they say, if men got pregnant, abortion would be a right. With wealthy white people being at risk for COVID-19, it didn't surprise me that there was this sense of urgency. It was different from HIV, where the characterization of those who suffered was "the other."
WCT: With everything that's happened the past 18 months—from COVID to the country's "racial awakening"—what did you learn about yourself?
PW: Hmmm…. I thought there were a lot of things in my life, and it's difficult to parse out what was driven by other things and what was driven by COVID as well as HIV/AIDS. But while I don't know if I can precisely parse out what was driven by which—I lost my mother, I retired—what I can say, relative to where I am today, is that I have come to understand the importance of personal joy at this point of my life. There's also a critical necessity to explore and discover what makes me joyful, and to make a commitment to be in pursuit of that.
