A new book highlights AIDS activists around the world in the 1990s. It also reveals the reasons they chose to become involved in HIV activism.
The AIDS Activist Project comes from photographer Bill Bytsura. Born in Plattsburgh, NY, in 1956, Bytsura moved to Pennsylvania in 1974, where he began to pursue photography. He has been based in Panama since 2010.
Bill and Randy
Bytsura’s involvement in AIDS activism came after he lost his own partner to the disease. The book begins with him documenting this devastating event. Randy Northup was just 36 when he died in 1988. He and Bytsura had been together seven years.
Bystura vividly remembers going to his partner’s doctor’s office with him.
‘He called us in, then asked Randy to wait while he took me into a separate room,’ he says in the introduction to the book.
‘He asked, “How much do you know about what’s going on?” I told him “Well he told me he tested HIV+ last week.”
‘The doctor responded, “Randy is very sick. If he doesn’t get into a hospital today, he could get pneumonia and be dead in three days.” I lost it and broke down. He handed me a box of tissues and told me to get myself together… that Randy didn’t need to see me this way, so I did.’
Randy died just weeks later.
The death of his partner, and of others he knew, led Bystura to become involved with ACT UP (The AIDS Coalition to Unleash Power). The group believed in direct action to lobby for change Bystura went on to photograph many of those involved with ACT UP in the 90s, both in the US and Europe.
‘I saw ACT UP members as brave people taking a stand,’ Bytsura says in a press statement. ‘But the public and media saw them only as sinners, lawbreakers and disease carriers. My goal was to photograph a series of studio portraits of these warriors, to show the world their heroic and mournful sides.’
‘It hurts as much today as it did way back in the day’
He tells GSN that going through his archives to put the book together was akin to ‘going through my high school yearbook.
‘Though I don’t see much of my fellow activists these days, I still feel a camaraderie with them. It’s similar to people who fight in a war. We’ll always be AIDS activists, and we will always have a connection.
‘As work progressed on the AIDS activist project, I did a lot of research to follow up on the activists depicted to see where they are today. One of the hardest things was finding out that someone had passed away. That stopped me in my tracks several times. It hurts as much today as it did way back in the day.’
‘This book is also a renewed call to action’
Besides being a memorial to those who struggled, protested and died, Bytsura says the book has relevance today.
‘This book is also a renewed call to action, because the AIDS epidemic is not over. Infection rates are rising again, and the Trump Administration, like Reagan and Bush, is ignoring the dangers.’
What does he feel was ACT UP’s biggest achievement?
‘Raising visibility of the epidemic and achieving advances in treatment,’ he replies. ‘If you look at the populations most affected by AIDS in the 80’s, it was the gay community at first. There wasn’t a lot of action to investigate this strange disease, or to stop the spread. These were scary times.
‘ACT UP formed because of this. We rose up and demanded action. ACT UP was instrumental in getting AIDS in the news, forcing the government to act, and speeding up the discovery and testing of new treatments for AIDS.
‘People with AIDS (PWAs) went on TV talk shows, spoke publicly and changed the perception of AIDS. That was an incredibly brave thing to do.
‘We are still experiencing the benefits of ACT UP’s achievements even today. It sparked some of the political advancements of the LGBTIA community, including marriage equality. And we inspired other organizations to challenge the medical community and demand a say in their own care and treatment.’
Below are just a handful of the dozens of images and stories that feature in the book. Alongside the photos, there are also model release forms and letters in which many of those pictured explain their reasons for protesting.
Many of those pictured went on to die from the disease they so passionately fought against.
Aldyn McKean, ACT UP New York, NYC 1992
‘Aldyn was a frequent spokesman for ACT UP, often representing the organization at International AIDS Conferences and on national television.
‘This image is from the second shoot I did with Aldyn. He called one evening to say he was just leaving his apartment to go to an opening at the Museum of Modern Art. He lived across the street from me on East 14th in Manhattan. He said, “I have 10 minutes before I have to leave, there are no pictures of me in a tuxedo, and this may well be the last chance to get one.” I quickly set up the lights, he came by on his way to the opening, and we did the shoot. This is Aldyn in his tuxedo.
‘Aldyn died on February 28, 1994 due to complications from AIDS.’
Jeff Getty, ACT UP Golden Gate, San Francisco 1997
‘Jeff received a bone marrow transplant from a baboon in 1995. He was the first person to receive a bone marrow transplant from another species. The hope was that the baboon’s natural AIDS resistance would take root in his system. This procedure was an example of the desperation felt by so many people who were seeking for a cure for AIDS. It was highly controversial and, ultimately, failed.
‘Jeff died on October 9, 2006 of heart failure and after long struggle with AIDS.’
Luis López-Detrés and Eric Sawyer, ACT UP New York, NYC 1990
‘Luis López-Detrés was one of the founders of both the Latino Caucus and the Global AIDS Action Committee of ACT UP New York. His work in these two organizations included outreach to Latinos and people of color on HIV issues as well as drawing attention to the needs of people living with AIDS in the developing world.
‘Luis went on to become the editor of SIDAahora, the independent Spanish language magazine of the People With AIDS Coalition of New York (PWACNY). Through SIDAahora, Luis advocated for and educated Hispanics worldwide, from Argentina to Mexico to Australia to Denmark.
‘Eric continues to fight HIV as the VP of Public Affairs and Policy at GMHC, while honoring those we lost as a Founding Board Director of the NYC AIDS Memorial.’
Hal Haner, ACT UP New York, NYC 1990
‘Hal Haner, 1958 – 1990, was the first person I photographed for this project. This image was taken at my studio on East 14th Street in New York City in 1989. A few weeks after the shoot, Hal came to the studio to see the contact sheets. This image was his favorite; he was especially struck by the contrast between Reagan’s face and his own.
‘I last saw Hal at a demonstration in 1990. He would walk the picket line once or twice then take a break, sitting on a sidewalk newspaper box to catch his breath, then returning to the picket line chanting. He was weakened by AIDS, but continued to fight and held on to the hope of a cure for as long as he could.
‘Hal Haner died on July 7, 1990 of complications due to AIDS.’
Dene Greenough and Floyd Martin, ACT UP Atlanta, Atlanta 1992
‘Floyd and Dene had been together for a little over two years when this photo was taken. In the photo, you can see a mediport in Dene’s upper left chest, in addition to a scar from where the mediport had been moved after becoming infected. Dene wanted to show this so people could see the intimate and realistic aspects of living with AIDS. At the time, he was fighting Cytomegalovirus, an infection that can lead to blindness.
‘Floyd recalled to me the pride he felt marching with his partner Dene in ACT UP demonstrations. On September 29, 1992, Dene died due to complications from AIDS. Floyd is living in the Atlanta area.’
Luke Sissyfag, ACT UP Seattle, NYC 1993
Juan Mendez, ACT UP New York, NYC 1991
‘Juan Miguel Mendez was a journalist who worked in both Latino and gay media. He was also involved in a wide array of political and activist pursuits on AIDS, homeless youth, domestic violence, and LGBT equality. Born and raised in San Juan, Puerto Rico, Mendez lived for many years with AIDS, before dying of heart failure at the age of 41.’
Phil Zwickler, ACT UP New York, NYC 1990
‘Phil Zwickler directed documentaries and wrote extensively about the AIDS crisis and gay and lesbian issues. He died of complications from AIDS at age 36.
‘Mr. Zwickler worked with experimental German filmmaker Rosa von Praunheim on Silence Equals Death and Positive, films about the rage and frustration of people with AIDS. Both films were shown at the 1990 Documentary Festival of New York, in addition to Fear of Disclosure, a short film by Mr. Zwickler and David Wojnarowicz about the dating problems facing gay men in the age of AIDS.’
Ellie Cachet and her father Terry Stogdell, ACT UP Golden Gate, San Fransisco 1997
‘Terry contracted HIV in the early 1980s as part of a group of Hemophiliacs who were infected by recalled pharmaceutical products. Terry died on April 14, 2002 due to complications from AIDS.’
The book, the AIDS activist project, by Bill Bytsura, will be launched with an event Housing Works Bookstore Café, New York City on 5 November. More info: billbytsura.com