When I look at this photograph of Randy now, I can’t believe I was in such denial that something was very, very wrong. In the summer of 1988, AIDS was decimating the Gay Community; there was a lot of ignorance, fear, and hatred of AIDS & the Gay Community. In 1988 Randy began to lose weight, he continued work as a restaurant manager. He began to talk about moving back home to his hometown of Seattle, where he grew up. He said he wanted to be closer to his family. We decided we would go to visit and see what would become of it.
Weeks before we were to leave, he came home early and told me he had been fired. I didn’t know he would go to work at 6 a.m., between breakfast and lunch service he would lay down to rest in the basement stock room. I don’t know how long this went on, but the staff told me he had been doing this for some time.
He continued to lose weight, I became concerned. He had been seeing a doctor, I assumed everything was ok. He complained of back problems, I thought he was depressed. He wanted to leave New York to go home to be closer to his family. Looking back, I didn’t want to know the truth and avoided it at any cost.
Friends would ask me if Randy had AIDS, I’d get angry and think they assumed because we were gay, we would get AIDS. I would say no, he was depressed and wanted to move to Seattle, he had enough of New York, besides he was seeing a doctor, so no, he didn’t have AIDS.
One afternoon, he had a doctors appointment, I wanted to go with him, but he insisted on going alone. Afterward, we met at a restaurant, Hisae’s, a Sushi restaurant by Copper Union. We had become very close with the sushi chef and the manager, we always had a good time there.
When he arrived, I was sitting at the sushi bar, talking with the chef. He sat down next to me and had a frightened look on his face. I knew now something was very, very wrong. I asked him what the doctor said. Randy said, “I’m HIV+”
Our world began to crumble. I lost it, I started to cry, everything I tried to avoid and deny hit me like a ton of bricks.
I began calling the AIDS hotline and any other place to get more info. I was told that just because he was HIV+, it didn’t necessarily mean he had AIDS. But as the days went by I could now see how sick he was, it was getting worse. On the day we were supposed to leave for Seattle to visit his family, he was very sick. There was no way we could travel. I called his doctor, he told me to come in right away.It was a rainy day, the doctor’s office was on 6th Avenue and had large windows that looked out onto 6th Ave. When we arrived, the doctor told Randy to wait in the reception area and asked me to follow him to his office. He shut the door and asked me how much I knew, I told him I knew Randy was HIV+. He said, “No, Randy has AIDS, If he doesn’t get into a hospital today, he could get pneumonia and be dead in 3 days.”I hit the floor. I lost it. I didn’t expect this. I was terrified.
The doctor said, “Pull yourself together, Randy doesn’t need to see you like this”. I got myself together and in that instant, became Randy’s caretaker. The doctor said to go home, he would call us in a few hours.
We got home, Randy had to call his family to tell them we weren’t coming.
I will never forget, I can still hear him on the phone saying, “Dad, I have AIDS”.
The doctor called back later that afternoon and said go to the emergency room at St. Lukes-Roosevelt Hospital, on Amsterdam Avenue and 114th Street. He said since it was raining, it wouldn’t be crowded.
We lived on East 14th Street, so we took a cab up to St. Lukes. It’s on the upper west side of Manhattan 114th Street and Morningside Drive. I asked the cab driver to take the long way through Central Park, not knowing it would be the last time we would see Central Park together. It all seemed like a 1950’s movie. A rainy day, NYC in black and white.
We arrived and sat in the waiting area, Randy gave them his info and we sat back down to wait. When they called his name, we got up and I waited with him for someone to come and get him. When the nurse came to meet us, I asked if I should wait.
The next day, I went to see Randy at the hospital, they couldn’t find him. It took a few hours before he was located. He was on a bed in a hallway overnight until a room opened up for him.
I can’t remember the floor the AIDS ward was on. Time has blurred memories. The room they had for Randy had 2 beds. This was so family members could stay overnight and keep the patient company. They encouraged it. It was comforting to the patients. They did all they could to help patients through the ordeal of AIDS.
The memories I have of folks at St. Lukes are good. The nurses were helpful, kind, devoted. Considering the time, they were fearless. They were on the front lines fighting to save lives and comfort people with AIDS, though little was known about it.
Randy was in the hospital for about 2 weeks. I would spend the night, then go home to walk the dogs, shower, and return to the hospital. We had many loving friends who helped with whatever we needed.
On the day he died, I returned to the hospital. I had been gone just a few hours. I came back to find him finally succumbing to AIDS. I knew because of how he was breathing. They call this type of breathing Cheyne-Stokes it begins when one is in the final stages of death.
I started crying, singing a silly song Randy would sing to me sometimes, “A Bushel and a Peck” it went like this:
“I love you a bushel and a peck
A bushel and a peck and a hug around the neck
A hug around the neck and a barrel and a heap
A barrel and a heap and I’m talkin’ in my sleep”
I told him it was ok to go, everything will be ok. My sister Mary was coming from Pennsylvania to see him and say goodbye, and friends from around the city were on their way to the hospital as well. I sat on the side of the bed, crying. A nurse came in, sat next to me, and said “These things happen for a reason”. She put her arm around me and hugged me. I could not for the life of me imagine there was a good reason for Randy to have to die.
I was with Randy when he passed. I am forever grateful I was able to be with him when he died, he was not alone, he was loved.
Hal Haner, the first person I photographed for the project.
It was difficult after Randy’s death. In 1989, I went to see a counselor at The LGBTQ Community Center. I was told; you have to stop drinking; you have to stop doing drugs. You have to go to ACT UP meetings; make new friends. Meet people going through what you are going through.
I had no clue what ACT UP was. I did as I was told; went to a Monday night meeting at the Center. I joined the Media committee and eventually, I found a place in ACT UP.
Around that time, I was accepted into the Community Health Project. When I enrolled, I was told they test t-cell counts every 3 months. If that was good, I was ok. They would test for HIV if asked. If they saw problems with t-cell numbers, they might suggest finding out your status, it was left to the patient.
In the midst of this, work began on the AIDS activist project.
The first person photographed was Hal; we became friends. I saw him at ACT UP demonstrations. During the demo; he marched a bit, then find a place to rest for a few minutes. AIDS was taking its toll; he got back up, he fought on.
Hal came to my studio to look at his contact sheets. He picked out the photo used in the book. He liked the contrast between Reagan’s face and his. One day he came by after his appointment at Beth Israel Hospital. He was going there for radiation to treat Kaposi Sarcoma, a cancer common to People With AIDS. They began to ration the treatments; 3 lesions at a time.
It was then I decided to get tested for HIV. I didn’t want to take up a spot if someone else needed the care. I asked to get tested. They went over everything involved and the possible consequences.
I went in for my results, the doctor came in and said; congratulations, the test came back negative. I was happy; relieved. When I got out to the street, I found the first payphone and called my sister to tell her.
After hanging up, I thought, this really doesn’t change a thing. My friends are still sick, dying. Hal can’t get the treatment he needs.
After Randy’s death, I told myself, “One day it will be a year from now”, then “Someday it will be 2, 3, 10 years from now”. Now it’s 32 years since Randy’s death.
I had a dream soon after Randy’s death. In the dream, Randy said “I have 5 things to tell you. Number one, I am very far away from you and it’s hard for me to get back to talk to you anymore. Number two, your aura is red which is very, very good, and mine is purple now.”
I never followed the “aura” thing, but knew a friend who did. I asked what the colors meant. She inquired as to why I was asking; I told the dream to her.
She explained, “What he is telling you is that he is moving further away in the spiritual plane; represented by purple. He won’t be able to come back anymore.
Your aura being red means that you have work to do here, and you need to keep on doing what you are doing.”
I never knew what the other three things he wanted to tell me might have been.
Maybe dreams mean something. Maybe they don’t. I have a feeling, a hope, that there is something after we die. Is it Reincarnation, or an alternate universe?
Am I avoiding the truth of death? Trying to mask the sorrow of losing someone?
“These things happen for a reason.” I still recall those words from the nurse when Randy died.
AIDS Activism opened my eyes to many things. It introduced me to an amazing bunch of people from around the world who cared about something so strongly. They inspired me and still do.
I am grateful for the things I learned, the people I met, and the honor to join in the fight against AIDS.
Out of all this, the AIDS activist project came to be. Maybe this is the work that Randy said I still had to do I feel I’ve accomplished something meaningful in my life. It somehow justifies my existence here. It made some sense out of Randy’s death.
We’re very excited to announce that The International Center of Photography is now carrying “the AIDS activist project”. ICP is in a new location at 79 Essex Street, New York, NY. Stop in and check out the exhibitions, and of course, pick up a copy of “the AIDS activist project”!
the AIDS activist project is an independent publication born out of a successful campaign on Kickstarter, a grassroots effort to publish this historic project. We want to support and encourage everyone to visit your local bookstore to pick up a copy of the book. If you manage, work at, or have a favorite bookshop in your neighborhood that you think would be interested in carrying the book, please let us know.
If you haven’t picked your copy of “the AIDS activist project” yet, now is a great time to pick a copy and help us get more work from the project out there.
There are many images in the project that we couldn’t include in the book. There are literally thousands of images, over 150 portraits of AIDS activists and many images from ACT UP demonstrations unpublished from the project.
Now we’ve set a goal to digitize more work from the project archives.
It’s been 50 years since the Stonewall Riots, 49 years since the first Pride March, 38 years since the first AIDS cases were reported, and 32 years since ACT UP began.
Thats a lot of history. We’ve had to fight for the progress we’ve made. One theme that runs through all of this is activism. We’ve made tremendous progress in LGBTQ Rights and the fight against AIDS.
I came of Activist Age in 1988 after my partner died of AIDS. I somehow ended up in an ACT UP meeting in NYC.I met some amazing people there, dedicated, smart, angry and effective.
Out of my experience in ACT UP came “the AIDS activist project”, remembering and honoring the people who fought and changed the course of the AIDS crisis. The desperation we felt in the ’80’s created the in-your-face activism and that brought us where we are today. This movement, thankfully, changed things for the generations that have come since, who didn’t have to live through the nightmare of the AIDS Crisis.
I am proud, proud of who we are, proud of my activism, proud of the process we’ve made. I am also proud to have the opportunity to stand shoulder to shoulder with so many great activists.
History needs to remember this activism, and we need to remember the ones we lost to AIDS, especially during Pride. They fought AIDS, but didn’t make it here with us to celebrate.
This project and the book were a long time in the making, over 30 years. This book is a labor of love, sharing my experience, and letting folks get to know the people who were involved in AIDS Activism. The fact that people will get to know about the people, the activists who fought and made a difference in the book, Anne, Moises, Tom, Kate, Floyd, Mona, Tigger and everyone else is all I could have wanted to happen.
I published, and am distributing the book myself. It’s been a trying, overwhelming but worthwhile effort. I am very happy it’s done and out there. I could have hoped for no more.
I’ve been reaching out to Independent and LGBTQ bookstores across the country to distribute the book. If you work at or manage a bookstore, if you have a favorite bookstore in your neighborhood and think they would want to carry the book, please let me know and I can follow up. I wanted to keep this all “in the family”
I hope you’ll consider purchasing your own copy of the book & support the AIDS activist project. For more info, samples from the book and purchase the book, please click here to go to the AIDS activist project page here.
I’m very excited to let you know that the Guggenheim Museum is now carrying the AIDS activist project book. The book is available in conjunction with the Robert Mapplethorpe Exhibition which opened yesterday. It’s really amazing to see the AIDS activist project joining ranks with the objects and books being offered to support the Mapplethorpe Exhibition.
The Mapplethorpe Exhibition is entitled “Implicit Tensions: Mapplethorpe Now”, and will run in two parts. The first, January 25 – July 10, 2019, the second part opening on July 24th and running through January 5, 2020. More about the exhibition here.
I attended the Opening Exhibit of “positive/negative: HIV/AIDS” last night at New York University.Seeing work from “the AIDS activist project” included with other artists, such as David Wojnarowicz and Hunter Reynolds, whose work influenced me so much, and who I respect as artists was humbling.
Among the works were video clips showing the “Day of Desperation”, when ACT UP took over Grand Central Terminal in NYC. This was the ultimate flash mob. The entire terminal was turned into an ACT UP action. Seeing that power again; going back to the days when people were literally fighting for their lives is incredible.
The exhibit will be on display and open to the public from October 12, 2015 through January 15, 2016. Gallery hours are Monday – Friday 10 a.m. to 6 p.m.
Work from “the AIDS activist project” will be included in the new exhibition at Fales Library. The opening will be this Friday, October 9th at NYU’s Fales Library, 70 Washington Square South, 3rd floor.
Following is the exhibition descrition:
Culled from the archives of the Fales Library, positive/negative: HIV/AIDS examines both the compassionate and the callous responses to the AIDS epidemic (Acquired Immune Deficiency Syndrome) in America during the 1980s and 1990s, with specific relation to politics, education, faith, and the arts.
“Quite correctly, much historic record has emphasized the negative reactions that permeated the early years of AIDS,” said curator Brent Phillips, Fales media archivist. “However, through all the malice and death, scores of citizens banded together in a profound, positive manner.”
positive/negative: HIV/AIDS primarily features items from the Fales Downtown Collection, including archival documents, correspondence, photographs, posters, clothing, art works, literature, and rare audiovisual material that cover both the emergence of and reception to AIDS. Also on view: Patina Du Prey’s Memorial Dress by Hunter Reynolds, unrealized art conceptions by artist David Wojnarowicz, and selections from Bill Bytsura’s ACT-UP photograph collection.
“Fales did not intentionally set out to document this epidemic,” said Phillips. “But unquestionably the impact of AIDS proved devastating for the New York downtown arts scene in the 1980s and 1990s. The numerous archives that make up the Fales Downtown Collection reflect this violent disruption of imagination, the overwhelming loss, and also the nearly unprecedented humanitarian achievement AIDS motivated in New York – and throughout the country.“