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HIV at 40: Long-term AIDS survivor Sean Strub on diagnosis, being mayor, Larry Kramer
by Andrew Davis
2021-03-04

This article shared 1927 times since Thu Mar 4, 2021
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To say Sean Strub is a fighter is almost the supreme understatement.

He was diagnosed with HIV/AIDS in the mid-1980s—when having the disease was almost certainly a death sentence. (Even the doctor who diagnosed him passed away a couple years later.) In the mid-'90s—after becoming the first openly HIV-positive person to run for Congress, and well into a career as an activist—Strub's mortality seemed to be nearing an end after he founded POZ magazine, as his body was covered with advanced systems like Karposi's sarcoma (a form of cancer).

However, things turned around for Strub, as antiretroviral therapy appeared on the scene, helping him immensely. And he didn't just survive; he thrived: Strub (and partner Xavier Morales) moved to Milford, Pennsylvania, where he purchased a hotel and, in 2017, became mayor of the city—which voted overwhelmingly for Donald Trump in 2016.

Windy City Times: Did you think we'd be 40 years in and not have a cure?

Sean Strub: Well, first of all, I didn't think I'd be 40 years in. But did I think we'd be 40 years in and not have a cure? Well, it depends on how one defines "cure." We have a treatment that's basically a functional cure. I was never that optimistic about something that would eradicate the virus from the body, just because it doesn't work that way with viruses—so, in that sense, I'm not surprised.

In 1985, I was more concerned about making it to next year. In 2000—and in 2021—yeah, I thought things would get better, but I didn't necessarily expect a cure.

WCT: The very first time you heard of AIDS, was it called GRID [gay-related immune deficiency]?

SS: Actually, it was before that. The first thing I heard was a strange cancer affecting gay men in May of 1981, as a New York native. Then, over the summer, it started being called gay cancer and then gay-related immune deficiency.

WCT: I know you've talked about your journey in the book Body Counts, but I'm wondering if you could take us back to the day you were told you were positive?

SS: Sure. The day I was actually told, it wasn't an enormous surprise. Whatever this thing was, I thought I had it for several years. The late summer of 1985 was when I had a really bad case of shingles, and so the doctor said it could be AIDS-related complex (ARC); I was tested and had to go back two weeks later to get the results. I was still semi-shocked when I found it; it's life-changing news. The doctor said, "Look, Sean: These days, people have two years left."

I walked out of his office, and it was a beautiful day. I walked down the sidewalk and everything seemed surreal; every dream and aspiration, and my friends and family were swirling around in my head. Yet the rest of the world was walking by, unaware and going about their lives. Then I was walking south along Broadway, heading toward Lincoln Center, and I was looking at the faces of people passing me on the sidewalk—and I was wondering what their lives were like. I wondering if they were going through this incredible existential drama in their heads, like I was.

That evening I saw my boyfriend and told him. He didn't want to get tested, and he had already exhibited symptoms. We didn't have cellphones or emails then, and I didn't call anyone on the pay phone with urgent news.

WCT: And from there, you became an activist. What compelled you to do so?

SS: I think it's a lot of things. First of all, having the time to engage in activism is a privilege, but there's also a sensibility. I grew up in a university town where people were protesting was common. I was already a political activist, so being a gay-rights activist was a logical extension.

Also, I didn't have a lot of shame about the diagnosis; I had more shame about coming out and being gay. So without that burden of shame, I felt free to learn more about what was going on around me—and to protest the injustices around me so things could be better. A lot of people were afraid of losing their jobs or families; I didn't have a wife and children, so I didn't have a secret to protect. So all those things helped me become an activist.

WCT: A lot of people were justifiably very upset with then-President Ronald Reagan and his very slow response to HIV/AIDS. However, you also criticized then-President Bill Clinton. Why was that?

SS: When Clinton was elected, in 1992, that was the first time the LGBT vote played an active role in a presidential race. And it became apparent to me that—and I don't want to say this in a critical way—that a whole lot of community leadership became part of the Clinton administration. Once you become part of the administration, you lose the latitude to criticize. Those in the administration wanted those on the outside to criticize.

Queer people were happy to be part of the administration; it was like pixie dust, if you will—but it also distracted from the clear-eyed approach the administration was or was not doing. And the administration was horrific when it came to syringe exchange. The science was absolutely clear that syringe exchange dramatically reduced transmission—and the Clinton administration continued to question the science. They were trying to obfuscate what scientists said, which was utterly ridiculous. That made a lot of us angry.

WCT: I talked with [writer] Edmund White once, and he told me that he went to hundreds of funerals for friends who died of AIDS.

SS: I actually didn't go to that many funerals; I went to memorial services and celebrations of life. I suspect Edmund was encompassing all of those when he said "funerals." But in terms of them, I didn't go to hundreds although I may have gone to a hundred. There were certainly many more that I knew about, although I remember going to two in one day—and there was a third I could've gone to.

WCT: Regarding the LGBTQ community, do you think there's a more cavalier attitude toward HIV/AIDS these days?

SS: Well, yes, but the consequences of getting HIV/AIDS are not as dire as they were years ago. Having said that, do I think people are too casual about it? Yes—we're still getting a lot of transmission, but I think that has to do with who has access to healthcare as well as what type of relationship they might have with the criminal-justice system.

The challenges in reducing HIV transmission today are not so much singular to the virus as they are related to a broader set of circumstances in people's lives and structural elements in their lives.

WCT: Another giant of the HIV/AIDS community, Larry Kramer, passed away last year. Could you talk about the impact he had?

SS: Larry was one of several people who had an enormous impact on the epidemic globally. Larry's contributions could be looked at in two important ways. One, he helped us to find our voice. He helped us to find the anger against the injustice perpetrated against people with HIV. You know, Harriet Tubman freed slaves and she said, "I could have freed a thousand more if only they knew they were slaves." And Larry helped a lot of queer people understand they were oppressed. In that sense, Larry was the megaphone who showed us how effective anger could be. He gave us permission to express the anger smoldering within us.

Larry also believed that queer people were better than others. I don't know if queer people are better, but there are certainly ways we contribute to society. I once had dinner with Harry Hay, founder of Radical Faeries and the Mattachine Society. I was wearing a suit and tie, and he made fun of me because of that, saying that I was an assimilationist. He said that we're different from heterosexuals in that what we contribute to society is unique. And Larry really celebrated and loved gay people—and helped us to love ourselves.

But there are others. [Recently,] we lost someone who was just as much as giant: [physician] Joseph Sonnabend. Not only did he really invent safer sex—probably the most important contribution to prevention in the history of the epidemic—but he advocated for the aggressive treatment of opportunistic infections, including prophylactically, changed millions of lives. In the 1980s, when PCP [pneumocystis pneumonia] was the number-one killer of people with AIDS, he prescribed sulfa drugs for people with impaired immune systems. Yet it took the federal government years to issue an advisory, even though the science had been behind it and Joe had been prescribing it for years. A delegation of people had gone to Washington to beg [Dr. Anthony] Fauci to issue an advisory; during those years, 17,000 people died of pneumonia—overwhelmingly, gay men.

Joe was phenomenal, and he advocated for patients' rights. He was influential in saving so many lives. He was more private, as Larry was more public, though. Losing someone like Larry hurts because so many people identified with him.

WCT: Let's talk about your politics. I saw the movie My Friend, the Mayor [which chronicles Strub's mayoral win in Milford, Pennsylvania]. Did your win later give you hope regarding the 2020 presidential election?

SS: That's an interesting question. It gave me hope for the democracy. There was an opportunity to show, on a local level, that democracy can prevail if people participate. The role of money on the national level can be dispiriting and prevent people from participating. Our campaign showed that democracy works. So, at a time when it clear democracy was under assault—more so since that election—here we were demonstrating that it could work. And it also reinforced my belief that if we could get past this partisan divide, things could work. Things have to change from the ground up—how we relate to our neighbors, how we engage with others.

On the day that the Supreme Court gave George Bush the White House, in 2000, Gore Vidal wrote me a letter and he said, "Oh, well. [The country is] 224 years old. She's had a good run, but all good things must come to an end." He had been predicting the end of the American democratic experiment. Gore has died but I wish he were alive to see the film and see that, yeah, there's still some life here.

WCT: Interestingly, we seem to be at a point where we can't even agree on the actual facts—whereas, previously, we had different opinions about facts.

SS: Maybe it's my imagination, but I've looked at a local Facebook pages, but there seems to be a lot less of the QAnon items and equally ridiculous things. I don't know if that's because of what social media has imposed, but you know what? I think some people have learned to be a little more skeptical; if something sounds outrageous, they should check things. Maybe it's peaked.

But I think something that has made us vulnerable is the degradation of our public-school system. Over the last 40 years, it's significantly declined in quality. The teachers haven't gotten worse, but they have fewer resources and bigger classes. People don't have the same capacity for critical thinking, for reading, and for absorbing and processing information. We need to rebuild our public-school system.

WCT: Do you ever see yourself running for Congress again?

SS: No. Maybe if there's some dramatic change to the system. I have so much empathy for people in Congress because they have to spend so much time fundraising. It detracts from the quality of the governance we get. I think it's degrading to public servants—people we want to act in our best interest. As Barney Frank used to say, "It's the only job in the world where you're supposed to be elected and follow your conscience and do what's right—but you spend half your time begging for money from people who want you to do something else."

WCT: What's the most important thing you've learned about yourself?

SS: The most important thing is how much I have to learn. I've learned that no one has all the answers. I've learned my own weaknesses and I've learned how important it is to be close to people you love and who love you back.

I've also learned—through decades of political, human-rights and social-justice work—how fragile our gains are and how quickly people take the progress of the generation before them for granted. And that's across the board: You can look at reproductive rights and women's health, the civil-rights movement and AIDS. Progress is fragile and [involves] a never-ending commitment to keep and expand those rights.

WCT: Yes; progress can be lost in buckets and gained in drops.

SS: It is. We've seen, in all sorts of ways with the LGBT community, many countries going backward—and things could get much worse. When people in some faraway country are losing rights, we better pay attention because we could be next.

WCT: What would you like your legacy to be?

SS: When I wrote the book, I told my story to that point. What come to mind are young people I'd like to inspire. I love it when I hear from people who've read Body Counts and seen the film. I want as much of my life as possible to be an inspiring example. That's the legacy I most treasure.


This article shared 1927 times since Thu Mar 4, 2021
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