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Sean Strub: AIDS, History, and Survival

Sean Strub: AIDS, History, and Survival

Author: Frank Pizzoli

January 11, 2014

Sean Strub is synonymous with a colorful mosaic of LGBT and HIV/AIDS benchmark events. His memoir, Body Counts: a Memoir of Politics, Sex, AIDS, and Survival (Scribner), is a fascinating blend of iconic moments.

Yoko Ono, Warhol associates, Tennessee Williams, Gore Vidal, New York City royalty and otherwise stodgy Philadelphia Biddles all enter the story.

For readers who lived through the dark years of AIDS before life-saving medicines, Strub’s life will parallel their own fears and triumphs. He founded POZ magazine.

For readers not familiar with those earlier times, the fast-paced chapters, full of insightful back-stories, are an insider’s view on the struggles of gay men during the early years of the AIDS epidemic.

This is not a politically correct history of those awful years when gay men with AIDS dropped like flies. Strub does not revise nor does he hedge regrets. One singular advantage is that Strub’s portrayal of events and individuals comes with the clarifying lens of time. The chapters are lucid, tell stories rather than recite data, and are absent of bravado that dims our view of complex issues.

A Librarian quote on Edelweiss (multi-publisher online catalog for librarians), says readers will “love, be enraged by, and in the end, be educated by” his memoir. The reviewer calls Body Count “Honest and raw” underscoring that Strub “has written today’s version of Randy Shilts’ And the Band Played On.” One of Paul Monette’s closest friends, actor-activist Judith Light, compared Body Counts to Monette’s Borrowed Time.

Strub took some time to talk with Lambda about his new book, the importance of history, and the current crop of HIV/AIDS narratives.

In our initial email exchange regarding your memoir, you wrote: “…honesty is what I hope this book will spark a discussion about…” Honest about what? How gay men made their revolution mostly sexual? How the repressive Heterosexual Dictatorship had as much to do with spread of AIDS as did our own sexual behavior? How gay men’s sexual practices and political repression combined to create a perfect storm?

There have been mistruths, half-truths and secrets about the epidemic from the beginning. In hindsight, we can understand why they happened, to some extent, but we can also correct the record and take responsibility for our part in those deceptions.

In the earliest years of the epidemic, many of us were not entirely honest with ourselves, let alone the public, about the degree to which the sexual behaviors of many gay men, myself included, facilitated spread of disease generally and HIV specifically. Even using the word “promiscuity” in any context concerning AIDS was problematic and risked an accusation of being sex negative or anti-gay. Some of that was surely driven by shame, but much of it was from fear of a backlash or a belief that the truth would further impede the appropriate governmental response. For years, the risk to heterosexuals, particularly heterosexual men, of sexually acquiring HIV was vastly exaggerated, for fundraising and political purposes. We haven’t been as upfront as we should have been about how HIV is a disease that is sexually transmitted almost entirely by men; there is only a miniscule number of female to male transmissions.

Proportionally, a small number of female to male transmissions may be the case in the West, but what about places like Asia and Africa?

There is no question but that there are only a tiny number of female to male transmissions in the U.S., probably even fewer than are officially reported because some men lie about risk behaviors concerning sex with other men or injecting drugs. The exact reasons for the much greater prevalence of female to male transmission in Africa remains mysterious, but a vastly higher incidence of endemic infections (that both weaken one’s immune system and can greatly facilitate transmission) is one major factor.

Let’s be clear. The misinformation and deception during the early AIDS years concerned more than just gay men.

We weren’t just deceiving ourselves, or misleading the broader public, it was also how we were deceived. Many of us bought into the hype of AZT as a miracle drug, for example, only later to learn how many of us were harmed by AZT monotherapy. Yet today, few who were responsible for its widespread and dangerous promotion to asymptomatic people with HIV will acknowledge any responsibility.

As your book was releasing, designer and longtime amfAR board chair Kenneth Cole was asked on Chelsea Handler’s TV talk show Chelsea Lately how he got involved with AIDS research. He answered: “This is, was, like 25 years ago and people weren’t talking about AIDS then because stigma was so devastating (and arguably stigma has killed more people than the virus itself has), and the gay community wasn’t speaking up, they were afraid to.” You took him to task on Huffington Post.

I think Kenneth Cole knows better, and simply misspoke or exaggerated to make his point about how powerfully stifling stigma was in those days. Unfortunately, he won’t correct the record and admit his mistake. His historical revisionism accuses the gay community of not doing enough, implying blame, even though I doubt that was Cole’s intent. But to those of us who have spent our lives fighting the epidemic, it is profoundly insulting. It is like telling soldiers 20 years after the war that they didn’t do enough because they were afraid.

It also seems to be part of a trend that renders invisible so much of what the LGBT community did in the early years and instead celebrates heterosexuals and famous celebrities who swooped in to save us. I don’t mean to diminish the important and often courageous role of various celebrities and heterosexuals, but I also won’t stand by while our community’s leadership and contribution is ignored, diminished or maligned.

Why is it important that gay men, three and four decades after the Stonewall Riot and HIV/AIDS, finally have an honest discussion about our history?

Everything in the world happens faster and faster, including the rate at which the past is forgotten. I don’t think we’ll solve the HIV epidemic without learning from our history, particularly when we make the same mistakes again and again. To ignore, hide or forget that history and what we have learned from it is to waste a precious resource. Remembering our history is also a way to honor those who fought, and died, for freedoms we enjoy today, including our survival. This is important, whether we’re talking about LGBT rights, the AIDS epidemic or any social justice struggle. For gay men it is perhaps particularly poignant, since we lost so many early in their lives. If we don’t remember them, who will?  We can’t expect Kenneth Cole or others, including younger gay/bi men, to know our history if we don’t know it ourselves.

Regarding our own history, in the last couple years we’ve seen a resurgence in AIDS/HIV narratives –movies like How to Survive a Plague, Fairyland, United in Anger, We Were There, and Perry Halkitis’ book on survival and resilience, The AIDS Generation. Why now?

Much of the reason we are now in this “look back” moment has to do with the passage of time. We are now more than 15 years from the peak of the dying in the U.S., enough time to enable some perspective and for survivors—with or without HIV—to have adjusted to the new reality of an epidemic that is more like a serious chronic illness than immediately life threatening.

If one looks at the cultural production after the Holocaust—books and films, mainly—reflective works weren’t really produced in great number until the early 60s and then increased steadily for the following 15 or 20 years. Once survivors adjust to survival, which doesn’t happen overnight, in time they are able to process grief and pain that had been siloed or repressed years before and, in time, begin to feel a greater sense of obligation to witness and share what they experienced. There are fewer and fewer people around who were on the frontlines from the beginning and able to tell what happened; it is important that we document this history or we risk losing it.

With fewer and fewer people around who can tell the story of early AIDS, what are your thoughts on our current narratives? Do they differ from your own perspective?

The films, books, and exhibits that we have seen in recent years have also inspired others to create their own; no one project is going to tell the whole story. The AIDS experience is as diverse as is the experience of living. Randy Shilts’ book, And the Band Played On, is generally considered a fairly comprehensive history of the early days of the epidemic, but it was written before ACT UP was founded and is written from a San Francisco perspective, where Randy lived and covered the epidemic for the SF Chronicle.

David France’s film, How to Survive a Plague, focuses on one part of ACT UP and TAG and a handful of individuals. The early days of the epidemic in New York has not yet been documented in detail; I do so to some extent, but not nearly to the degree needed. As important as ACT UP was and is (veteran and new ACT UP activists meet weekly in NYC)—and it was a huge part of my life—ACT UP reflects a different kind of empowerment than that promoted by Michael Callen, Richard Berkowitz, Bobbi Campbell, Dan Turner and the guys who wrote the Denver Principles. In many ways, the ideas preceding ACT UP were more radical and influenced me greatly.

There’s another aspect that is important to me. I’m not buying into “we were all heroes” and “we changed the world” and all that stuff. That’s just too rah-rah and simplistic; we deserve a more nuanced understanding of those times and how it affected us, what motivated us then and what the outcomes are today.

Many of us saved our own lives, which is obviously important, but the history of AIDS activism for many white gay men stands as a singular accomplishment, often not seen by them in context with any broader social justice struggle. Once they achieved the likelihood of survival, their interest went elsewhere.

AIDS activism in communities of color also dates back to those earliest years, but more often was intersectional from the beginning. AIDS had to find its place within the myriad challenges facing those communities. I don’t know any activist of color who I think of as being heavily engaged in epidemic work in the late 80s and early 90s who isn’t still heavily engaged in epidemic work, including through organizations focused on poverty, penal system reform, drug policy or other issues.

Many of the heroes I admire the most are people who were never photographed, never quoted, people who went about their day-to-day lives as best they could, helping to feed and care for their friends, neighbors and co-workers who were sick. Some of our activism, like ACT UP’s changing of FDA drug approval policies, was also an unwitting partner to a right-wing corporate agenda. We need to own that part of the history as well.

Finally, so much of the history remains incomplete. A lot of people recognize the names of the early gay white men who were AIDS activists, but who knows the women, or the gay men of color? Gay white men had a shared identity and cultural infrastructure that documented and preserved and, often, glorified their history.

One thing we must do is not repeat the mistakes of the past. Do we risk repeating old mistakes? What would you like history to teach us?

The biggest mistake is failing to learn our own history, which is something we need to teach in schools and to young LGBT people. But to speak just in terms of HIV prevention specifically, many continue to respond to and think in terms of the epidemic that was a few years ago, not the epidemic we have today. We can’t use fear as a prevention tool because the consequences of HIV infection today are very different than they were in 1989, yet fear-based campaigns are often most popular with old-timers who are still in terrible pain from what we experienced. We know how awful it was and we are frustrated that others, especially young gay men, seem not to understand this. But that kind of HIV prevention messaging isn’t effective and may be counter-productive.

Same for shame-based prevention messaging, which is appreciated by those already engaged in the desired safer behaviors, but for those whose behaviors the prevention campaign is trying to change, shame-based messaging drives them further and further away from that change.

We don’t target prevention funding to the communities at greatest risk. Two-thirds of new HIV infections are gay men or MSM; yet only a small fraction of prevention funding is targeted to that community. We know that targeted community-based HIV prevention programs are effective, so why in 2014 isn’t that where we are spending the funding?

I recently saw this poster and I thought it was interesting—the importance of history over nostalgia. I wonder if you might have any thoughts on it as we seem to be entering into a sort of canonizing phase of past AIDS/HIV activism.

I love [AIDS Action Now‘s] work, and Sero Project (the group I run) has worked with a number of their people. The nostalgia essay is right on the mark; I don’t think learning from our history is the same as the nostalgic impulse. Both have a role, but the most important thing coming out of AIDS Action Now is the freshness of their approach, and their passion, which I think has had an influence far beyond their organization. Sometimes, especially when I’m speaking on campuses, I meet young activists or people who want to be activists and they make comments that lead me to think they think all the “exciting” work was in years past. I tell them about how, in the late 70s, when I became so politically active and engaged in social justice work, I felt like I had “missed out” and was late to the party on the civil rights and anti-war movements. Initially, my work advocating for a nuclear freeze and against Apartheid and other efforts felt pale compared to these monumental battles in the recent past, which had been glorified and romanticized. I tell those students that the most powerful and important activism is what is in front of them today, that all around them are needs and issues and work that a few years from now will look more important and pioneering and significant than it might seem to them today. The most important activism is what each of us can do today, not what someone else did in years past.


Photo: Greg Gorman
Frank Pizzoli photo

About: Frank Pizzoli

Frank Pizzoli is a writer, editor, and producer. His work has appeared in Lambda Book Report, White Crane Review, Instinct, POZ, Rivendell’s Q Syndicate and Press Pass Q, HIV Plus, AlterNet Syndication, Positively Aware, Body Positive, New York Blade News and Washington Blade. He is the publisher and editor of Central Voice newspaper and founder of nonprofit Positive Opportunities, Inc., a Points of Light Foundation award winner (2001).

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