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Two Articles: Interviews with ACT-UP activist and photographer, and author of The AIDS Activist Project, Bill Bytsura

#Tbt interviews with ACT UP activist and photographer Bill Bytsura, author of The AIDS Activist Project originally published in A&U Magazine

Retooling the Fight

Text by Alina Oswald

In his upcoming coffee-table book, photographer Bill Bytsura captures a portrait of early AIDS activism, offering a candid visual memoir of the epidemic—and a blueprint for continuing the fight
by Alina Oswald

Extraordinary circumstances call for extraordinary actions, and for people willing to go to extremes in order to act in such crises. The crisis in question is the AIDS epidemic of the eighties; the individuals determined to do something about it, members of the ACT UP (AIDS Coalition To Unleash Power) movement.

Today we find ourselves talking about ACT UP again, maybe triggered by its recent twenty-fifth anniversary or the AIDS-themed movies and documentaries that followed it—David France’s How to Survive a Plague, and the HBO adaptation of Larry Kramer’s The Normal Heart. Or maybe we return to the basis of AIDS activism as defined by ACT UP because we need an activist movement today as intense as the activism of the early eighties once was.

In many ways, ACT UP represents a blueprint for organizing, and acting in a crisis. After all, the movement defined the fight against the epidemic, and opened up new avenues that subsequently led to the progress we see today—treatment, life, and the possibility, although still distant, of a cure.

Portrayed by the media as loud, radical and unruly, at the end of the day, ACT UP members only wanted to make a statement, and draw attention

to a life-threatening crisis that nobody else wanted to acknowledge. They were the ones willing to take it to the streets, demanding a solution to the AIDS problem; the ones who, if needed, were willing to demonstrate inside the Stock Exchange building and shut it down, even if only for a few minutes…just to make a statement, and get their point across.

“Direct action from the inside,” photographer Bill Bytsura says, explaining the practices of the early ACT UP activists. “Infiltrate and use the smarts to get into these places where actually you can throw a wrench in the gears.” And he should know. He spent years, from 1989 to 1998, photographing not only ACT UP members, but also AIDS activists from across the U.S. and around the world, capturing the candid, human side of the movement, one that seldom, if ever, made the headlines. The result is a collection of 225 black-and-white, haunting portraits of activists (many of them lost to the disease), together with personal statements and photographer’s releases he had his subjects write and sign. In 2011, Fales Library acquired the collection, together with the original negatives. Sixty-five of the photographs are soon to become a coffee-table book titled, like the collection, The AIDS Activist Project.

It’s quaint to envision a coffee-table book about HIV/AIDS, perhaps as much as it is to talk about black-and-white images of death and dying associated with the darkest years of the pandemic, while sitting on a bench in New York City’s Washington Square Park, on a lovely and sunny fall day, surrounded by green trees and the chirping of birds. But here I am, listening to Bill Bytsura, mesmerized by the intense story he tells, feeling as if I’m listening to a mentor teaching a comprehensive lesson in human perseverance.

Bill Bytsura describes himself as “a regular guy” who moved from Pennsylvania to New York City in 1980. He didn’t look for ACT UP, but the movement found him. After his boyfriend, Randy, passed away in 1989 from complications related to AIDS, some friends who were going through the same kind of experience suggested that Bytsura goes to an ACT UP meeting. “It was crowded, but it was really intense, and people knew what they were talking about,” he recalls. “They were arguing,” he adds. “It was loud [at] times, and I thought, this is not me.”

So he left, but then went back. After a couple of times of going back to the meetings, he noticed a flyer with information about a media committee. Being a photographer, he decided to join the committee, and take pictures for ACT UP.

And so, Bytsura started photographing demonstrations—or actions, as they were called. He also started talking to people. In time, aside from capturing demonstrations and so-called radical behaviors, he started using photography to initiate an honest dialogue about AIDS.

Using his camera, Bytsura began capturing a candid side of ACT UP. He would photograph the activists with their guard down, in moments when they could just be themselves. Most of his subjects volunteered to spend time with him, in front of his camera.

The first to photograph was Hal Haner, who was also the first to die, only a few short months after the photo shoot. “He was from Kentucky, and

had a very Southern drawl,” Bytsura recalls. “He was very sweet, and very angry. He picked out this image as his favorite,” the photographer mentions, pointing at the image on the AIDS Activist Project Web site, “[because] he liked what was going on with the contrast between Reagan’s face and his own. I last saw him at a demonstration in 1990. He would walk the picket line once or twice then take a break sitting on a newspaper dispenser on the sidewalk to catch his breath. He was weakened by AIDS, but continued to fight, and held on to the hope of a cure as long as he could. He died on July 7, 1990.”

Maybe one of the most haunting images in this body of work is Tigger. Tigger was the only name by which Bytsura knew the subject, the man demonstrating at the VIII International AIDS Conference, in Amsterdam. Tigger chose to pose with Mr. Death, the carnival puppet, because, he said, he was facing death in the face every single day.

Tim Bailey wanted a political funeral, and his casket to be thrown over the White House fence. “When we went to Washington,” Bytsura recalls, “the police were ready for us. So, when we tried to take the casket out [of the van], there were a lot of people holding it, and the cops were pushing back,” he motions, waving his hands in the air, above his head, “to the point that the casket would fall onto the ground. We couldn’t throw it over the fence. So, I think we might have driven to another place, and had a smaller funeral.”

Aldyn McKean was respected, and liked in ACT UP. He lived across the street from the photographer. One day, in 1993, he was on his way to an art opening, when he asked Bytsura to photograph him, saying, “There are no photographs of me in a tuxedo, and this may well be the last chance to do one.” He died in February of 1994.

Photographing Dene Greenough and Floyd Martin was intense. The picture is not pretty, but rather a glimpse at the human body ravaged by the disease. “Floyd wanted to show the mediport that had been surgically implanted in his chest, so that he could be hooked up to IVs with AIDS medication. You can see where he had [the mediport] over here, and then moved over here,” Bytsura explains, pointing at his own chest. “People today are not aware of what it was like back in the day….”

Bytsura also photographed Larry Kramer, the co-founder of ACT UP. “Larry Kramer was—is—very vocal,” Bytsura says, “and speaks his mind. He came [to my studio] and we did some shots of him and his dog. Larry is known for being outspoken, but I think these [pictures] showed another side of him. When I showed him the images, he said, ‘These are some of the best photos anybody ever took of me.’ As this was in the early stages of the project, it meant a lot coming from someone who I admired for both his courage to speak his mind, and call[ing] people to action.”

As Bytsura started to work on the book project, he quickly began to realize that revisiting old photographs was going to be an extremely difficult task. It’s a bittersweet kind of feeling, because, as he goes through the photographs, he also gets to spend time with them. He mentions that looking through the photographs he came across an image of a guy from Amsterdam, a reporter with an old-school microphone. He remembers the guy saying, “I want my mic in the picture, because this is what I use, this is how I fight AIDS.” Bytsura pauses, as if that particular conversation replays in his mind. “These snippets come back,” he finally says. “Some are really tough.”

The AIDS Activist Project offers a unique take on the history of AIDS—raw, unfiltered, visual, and intimate. Today, AIDS is not the killer that it used to be, but AIDS is far from being over. There are still issues, which may require a retooling of the activism of the eighties in order to be solved, in order to deal with the present-day pandemic, a present-day defined by social media, blogs, and living on-line.

But, as the photographer mentions, while in some instances social media can be used as a tool—take Twitter, for example, and its role in the Egypt revolution—“liking” a Facebook post is not the same as showing up in the street, and blocking traffic, and risking being arrested. “I think something will have to happen,” Bytsura says, “before people will rally again like [they did] in the eighties and nineties. I love that intensity.”

The AIDS Activist Project

Some of the Bravest

Text by Alina Oswald
In his new photography book, The AIDS Activist Project, ACT UP activist and photographer Bill Bytsura pays tribute to the spirit of protest while reminding us that AIDS is not over
by Alina Oswald

Throughout the years, many photographers have embraced black-and-white to tell some of the most intense, intriguing, powerful and memorable stories for various reasons. Award-winning photographer and AIDS activist Kurt Weston [A&U, November, 2005] says black-and-white offers his art “a concentration of expression” and likes that intensity, in particular in his portraits. Ted Grant, the father of Canadian photojournalism, believes that “when you photograph people in black-and-white, you photograph their souls,” while Swiss-American photographer and filmmaker Robert Frank calls black and white “the alternatives of hope and despair to which mankind is forever subjected.”

ACT UP activist and veteran photographer Bill Bytsura, whom I interviewed for A&U in January 2015, also chose black-and-white photography to capture the souls, despair, as well as hope of his subjects, AIDS activists during the eighties and a good part of the nineties, in a remarkable body of work, The AIDS Activist Project. Influenced by the likes of Diane Arbus, Dorothea Lange, Roman Vishniac and Richard Avedon, Bytsura often uses black-and-white in his own work. To him, black-and-white photography is “more truthful, and much more powerful” and is meant to capture powerful images. And The AIDS Activism Project is just that, a collection of intense and intriguing portraits, a unique body of work that captures a less known, more candid, intimate side of the AIDS and ACT UP activists.

A Plattsburgh, New York, native, Bill Bytsura moved to Pennsylvania in 1974, where he became interested in photography. A few years later, in 1984, in New York, he started photographing professionally for clients like American Express, Newsweek Magazine, and Jazz Times Magazine, and also documenting a number of AIDS organizations. His photography work has appeared in national and international galleries, from New York and Pennsylvania to the “Don’t Leave Me This Way: Art in the Age of AIDS” exhibition at the National Gallery of Australia.

Bytsura started to work on The AIDS Activist Project about thirty years ago, photographing AIDS activists, in particular ACT UP activists from across the country and around the world. This impressive body of work includes some 225 photographs, as well as personal notes written by the activists themselves. In 2011, The AIDS Activist Project was included in the Fales Library and Special Collections, at New York University.

The AIDS Activist Project book includes only portraits of ACT UP activists. The book is “a memorial tribute to the departed” to those activists who’ve lost their battle with the virus, as well as a “reminder that the epidemic is not over.” In the foreword, David France (How to Survive a Plague) writes, “Photographer Bill Bytsura set out to memorialize those individuals, along with the movement’s rank and file, mid-battle.…What he produced is a study in defiance. But the photos betray a deeper insight. Yes, you see the power and the strength, the awful resolve in their faces. But he has also found fear, and the mountains of unprocessed grief. These beautiful photographs…bring us as close as we may ever get to knowing what the plague years wrought. Just look into the eyes of the frontline warriors.”

This November 5, I had the chance to look into the eyes of these activists when attending The AIDS Activist Project book opening event, at the Housing Works bookstore in New York City. Despite the rain, the bookstore filled with people, all eager to meet Bytsura and learn more about the story behind the book. A slideshow displaying images from the book was running on a big screen, on a wall. Bytsura, himself, made a point to welcome everybody, shake hands and pose for pictures. Among those attending the event, including someone who had come from Atlanta, Georgia, there were some familiar faces, familiar because I had seen them in Bytsura’s book. Ann Northrop was there, and so was Robert Vazquez-Pacheco, a member of the Gran Fury collective. He soon joined the photographer on stage, in a conversation about The AIDS Activism Project book, and a passionate dialogue about a then-and-now of AIDS, and ACT UP, activism. After all, there’s much to be said about activism, in general, and AIDS—ACT UP—activism in particular, when looking at it through the lens of time. Liking or Sharing something online, today, doesn’t quite equate to getting out in the streets and demonstrating for your life, taking the risk of possibly getting arrested.

Bytsura shared his personal experience of losing Randy, his partner of seven years, to AIDS, and the depression and sadness that followed. He reiterated his gratitude towards his friends who, while trying to help, had guided him to ACT UP.

To this day, the photographer still recalls the intensity of those meetings. “I was inching for the door,” he said, with a shy smile, while at the Housing Works bookstore, inching along the wall, as if to demonstrate the movement. And yet, as intimidated as he felt while at ACT UP meetings, he was too afraid of everything that was going on around him at the time, of the idea, back in the eighties, that authorities would tattoo individuals living with HIV, and so, he went back to ACT UP.

“Free condoms, dental dams + gloves all over the (spelled “de”) world!! The multi nationals have the money and the power, let them pay for it. Free excess to all medical help everywhere. Silence = death, Action is (with = over it) live (that’s why I’m an activist)”

-Lizet Vlasveld

At the Housing Works bookstore, during the Q&A session that followed, the audience wanted to know more about the making of The AIDS Activist Project body of work, the people Bytsura photographed, and about his feelings, as a photographer, while revisiting his work, making the final selection for his book.

“I was honored to be able to photograph people who were in ACT UP,” Bytsura said, his voice humbled by the memory of that experience. He wanted to make sure that the names and faces of those individuals—in particular of those who ultimately lost their battle with AIDS—would never be forgotten.

Never forgotten will be activists like Robert Farber, who was an artist and actor, and who noted, “I have AIDS. I take a lot of medicine to buy time. But there is really nothing anyone can do to change my situation. I know how this story will end.”

Never forgotten will be activists like Oscar Bodelier, whose note reminds that:

“Silence = Death
Action = Life
We have to protest
Protest to survive.”

One of my personal favorites is the portrait of Robert Garcia, now also gracing the cover of The AIDS Activist Project book. The attached note remarks: “So I would whisper to myself as I was marching shouting demonstrating, fighting back. Robert, every step is a tear you don’t want to cry, every arrest is an act of hope. I don’t know what ACT UP represents, a little order in this chaos we know as the AIDS crisis.” Signed “Robert Garcia, as a thought not a complete statement.”

There are also portraits of ACT UP activists who’re still with us, still leading the fight. Among them, Larry Kramer, Charles King, and Ann-christine d’Adesky [A&U, August 2017].
Also included is a portrait of Peter Staley. His note states, “[Activism has] gotten my T-4s going. It’s given me a social life. It’s like night and day compared to where I was before I began, before I joined ACT UP.”

The last portrait included in the book is that of Robert Vazquez-Pacheco. His is a hopeful message: “I work in AIDS because …I believe in social change. I believe that a real cure for AIDS involves addressing the problems exacerbated by the pandemic: homophobia, racism, sexism, classism, etc. The cure I want is more than just a vaccine. The cure I want is human liberation.”

Some thirty years later, at the Housing Works event, he called Bytsura’s book “an inspiration” and “a record to show that we were there, we were fighting.”

When I got to talk to Bill Bytsura, before having my own copy of The AIDS Activist Project signed by the author, he explained the reasons behind putting the book together, and offered a message to its readers. “When I was going to ACT UP meetings I would look around the room and think that these are some of the bravest and [most] courageous people I have ever met. My goal was to present them as such, and record the faces and words of people who stood up in the middle of one of the most tragic epidemics and fought for change, acceptance, and treatments. I’d like people to look at the faces and remember this movement and these people, and maybe be inspired that they, too, could help make change.”

Learn more about Bill Bytsura’s work and The AIDS Activist Project photography book by visiting:

To find out more about Housing Works and Housing Works Bookstore, please visit

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