Surviving the Scare

Portraits of the Original AIDS Activists


After losing his partner to AIDS in the late 1980s, Bill Bytsura went to a meeting of activists working for ACT UP New York, an organization founded in 1987 to fight the rampant stigma and misinformation about the disease. At first intimidated by those with more medical or political experience, Bill decided to contribute to the cause via his photography. He began making portraits of AIDS activists around the world, which he’s now preparing to publish along with notes written by his subjects. For Polarr, Emily von Hoffmann spoke with Bill about his work, and the ways in which conversation about the disease has changed since then.


Emily von Hoffmann: Can you please describe the first ad you put up for the project, and how you came to feel that it was necessary to make these portraits?

Bill Bytsura: I joined ACT UP in late 1988. One night, while at an ACT UP meeting at The Lesbian and Gay Community Center, I looked around at the people in the room, then I thought of all I read in the papers and the slurs on the street: “AIDS-carrying faggots” or “ AIDS kills fags dead.” Around that time, there was talk of tattooing and quarantining people with AIDS.

Mona Bennett. Image courtesy of Bill Bytsura.

I began to think that if people knew Moises, Ann, Robert or any one else in ACT UP on a personal level, they would understand that it was not people who were the problem, it was the disease called AIDS. So the idea of shooting a casual style portrait in a studio setting came to me. I took portraits of activists and asked them to write a story to go along with it. I made up a flyer for the literature table that was located in the back of the room. it said “Donate your face to AIDS activism Her/History” with my contact information. People would contact me either at the meetings or by phone.

Moises Agosto. Image courtesy of Bill Bytsura.

EvH: Were you at all concerned that leaving a public ad could make the wrong people aware of the project? Did you or your subjects ever face harassment because of your work together?

BB: No, that was never a concern for me or people photographed for the project. I feel that doing this project and having people come to see it in the exhibitions helped to lower the rhetoric and let people see the side of AIDS activism that I did — friends, brothers, sisters and yes, even mothers and fathers. They saw the people who knew the problem was the virus, and were fighting for a cure.

Image courtesy of Bill Bytsura.

EvH: You began going to ACT UP New York meetings after the death of your partner. You mentioned that this was very intimidating and you felt that you wouldn’t fit in, and you actually left because people seemed a little too intense. Can you share more about what those first meetings were like, how you became more comfortable (or didn’t), and how that related to your grieving process?

BB: AIDS activism dealt with many different aspects of fighting the AIDS Crisis. There was a lot of talk of treatments, and the efficacy of these treatments — things I knew nothing about. So for a long time, I felt out of the loop. There were strong disagreements on the floor sometimes, but that’s what made the group so effective, people were always allowed to voice their opinions.

Image courtesy of Bill Bytsura.

It became easier as I got to know more people and became a little more aware of all the facets of the AIDS Crisis, and I began to feel more of a part of ACT UP. And in the group it was possible to say “This is what I do, and how I can contribute.” You could work on the “Treatments Committee” or like me, in the Media Committee. So after a while, I found my place in the group as a photographer.

Tim Bailey. Image courtesy of Bill Bytsura.

Being involved in ACT UP, feeling like I was part of something bigger that was making inroads regarding treatment and health education, took my mind off of my personal loss and turned it into a positive thing. I don’t know how to say it, but it was somehow comforting being around people who were going through a similar thing as I was. Also, seeing the range of people in ACT UP, all the groups that were affected by AIDS, knowing that everyone was the same, fighting against a virus, trying to get better treatment and save lives.

Image courtesy of Bill Bytsura.

EvH: Alongside the portraits, you collected notes by the individuals pictured. Can you tell us about a note or two that particularly stand out in your mind?

BB: The two that stay in my mind include the note written by Robert Garcia. This was back in the days of fax machines, and if you recall, sometimes fax machines didn’t like each other. After Robert tried unsuccessfully several times to fax his story to me, I asked him to read it over the phone so I could write it down. He wrote something very personal, and I can remember thinking he was a little shy about reading it to me himself. But as he read it, he became a little emotional, I tried to comfort him and we spoke for a while.

Robert Garcia. Image courtesy of Bill Bytsura.

The other one is from Hal Haner. But it’s more the fact that he didn’t write one. He picked out the image of the shoot that he liked, but he died several months after and never got to add his words to the project. As the saying goes, “Silence speaks volumes.”

EvH: You also traveled to the ACT UP meetings in Miami, Puerto Rico, San Francisco, Los Angeles, and St. Louis. Later, you also photographed people in Berlin, Amsterdam, and Paris. What was it like, to go from feeling intimidated by the activists in your own city, to then traveling to work with all these different communities in very different places?

Hal Haner. Image courtesy of Bill Bytsura.

BB: As time went on and I traveled to photograph activists from the other chapters, I grew more confident about the project. As I met new people I realized what a worldwide network it was and how effective it had become. I began to feel this was an important project, not only because of the movement, but also it’s global scope and the respect it gained in the AIDS and worldwide medical community.

Image courtesy of Bill Bytsura.

My commitment grew as well. Since I worked and traveled solo, I can remember carrying cases of photo equipment through the subways of Paris and Berlin, sometimes leaving half at the bottom of the stairs while I ran up with the other half. One thing that I will always remember: When we went to Amsterdam, it was because of the new U.S. policy that did not allow people with HIV to travel into the U.S. The International AIDS Conference that year was meant to be held in Boston, but was moved in protest to Amsterdam. This was my first trip out of the U.S. and I was excited to go.

Saundra Johnson. Image courtesy of Bill Bytsura.

I managed to get a taxi from the airport to where I was staying. As I was talking to the driver and explaining why I was there, because of the U.S. policy and the Conference being moved, he stopped the taxi, turned around, looked at me and said “No matter, you are always welcome in Amsterdam!”

Image courtesy of Bill Bytsura.

EvH: Can you please tell us about one or two of your favorite images from the project, and the situation surrounding them?

BB: One is an image of Aldyn McKean, he was a real fighter and incredibly smart. We had already done a shoot at my studio on East 14th Street, then he called me and said he was going to an opening at MOMA and he would be in a tuxedo. He said this may be the only shot of him in a tuxedo. This was in the winter of 1993, he died at the age of 45 a few months later.

Aldyn McKean. Image courtesy of Bill Bytsura.

There is also a shot of Alan Contini, I was dog-sitting at the time did the shoot. He was in an advanced stage of AIDS and had lost much weight. The dog I was watching, her name was Phaedra, calmly walked over to him and sat by his side.

EvH: Today, the official knowledge about AIDS is much more complete than it was in the 1980s and 90s, and the mainstream acceptance of LGBTQ people is much more robust, but it’s still a disease that is stigmatized by some. What are some ways that the conversation about AIDS has changed over the course of your photography career?

Mey Hdert. Image courtesy of Bill Bytsura.

BB: The hysteria has died down dramatically, and people understand much better how AIDS is and is not transmitted. It’s not a “gay disease” anymore. It’s hit so many populations in so many countries now. I think that during my career and certainly during my involvement with AIDS activism, I’ve learned that there are effective and productive ways of challenging and changing the “system.” ACT UP is a perfect example of that. ACT UP, with its “in your face” activism, helped change the course of the AIDS Crisis and helped get us to where we are today, as AIDS has become a “chronic manageable” disease.

Alan Contini. Image courtesy of Bill Bytsura.

Because ACT UP ran on “Robert’s Rules of Order,” no one ever gained any type of control. I think that allowed ACT UP to change and reflect the needs the people who were fighting AIDS. I can remember marching in Gay Pride one year, maybe in 1992 or around there. ACT UP had a large contingent in the parade. I remember people clapping and shouting in support of ACT UP. That was an amazing and empowering moment.

In another way, in addition to fighting, educating and raising awareness of AIDS, the visibility of lesbian and gay individuals was raised. I think it also helped to gain more acceptance for the LGBT community. I think they go hand in hand to a point.

Image courtesy of Bill Bytsura.

Interview by Emily von Hoffmann and Polarr — Pro Photo Editor Made for Everyone. Follow Polarr on Twitter and try our products.

You can learn more about Bill’s upcoming book and Kickstarter campaign here.