Stories of Family
Carlota Vazquez de Gonzalez, 1890-1984
Story & Recording by Miguel Gonzalez
My grandmother, Carlota Vazquez de Gonzalez was born June 12, 1890. She was the youngest female of 12 siblings and was named after Queen Carlota of Mexico during the reign of Maximilian I.
She was a strong woman who faced adversity all her life. She was small in stature but commanded a room. She gave birth to her six children in her home with the help from my grandfather. She lost all of her children through illness and violence, including my grandfather. Only my father survived.
My grandmother was a woman beyond her years. She loved a cigarette and her daily ‘vitamin shot’ (whiskey) in the morning. She would tell me stories about the family, who we were and where we came from. She was very proud of her roots as I am but she was a realist and she knew that life was never easy. She was a woman of strong convictions and believed that faith/religion was personal and not to be shared with others.
My grandmother contracted AIDS through a blood transfusion during hip surgery. After her surgery, she became ill and we could never figure out why. Her doctors at the time would dismiss her illnesses due to her age. It was not until one visit that the nurse turned back her blanket that I noticed the Kaposi’s sarcoma lesions on her legs. I recognized them, because I had seen the exact same lesions on my friends fighting this horrible disease. My grandmother died on Thursday, July 5, 1984. I was 20 years old.
My grandmother was my strength and my protector. She knew about me before I knew what gay was. She told me that she knew I was never going to marry a woman. All she wanted was a child so that the family line would continue. I miss her more than life itself. The wound is still fresh for me. Maybe one day, I can stop crying for her.
Ryan White, 1971-1990
Recording by Jim Parsons
Story by The AIDS Memorial
Ryan White (December 6, 1971 – April 8, 1990) was a teenager from Kokomo, Indiana, who was expelled from his school due to his HIV status. He died when he was 18 years old.
White is buried in Cicero, close to the former home of his mother. In 1991, his grave was vandalized on four occasions.
White, a hemophiliac, contracted HIV through a blood transfusion. He was diagnosed in December 1984 and told that he had only 6 months left to live.
Doctors said that White posed no risk to other pupils. However, when he attempted to return to school, parents and teachers protested against his attendance, scared that he could transmit HIV through casual contact.
The dispute made news headlines around the world and turned White into an advocate for AIDS research and education. Although he lived 5 years longer than predicted, he sadly died just one month before his high school graduation.
Over 1,500 people attended White’s funeral on April 11, 1990 at the Second Presbyterian Church on Meridian Street, Indianapolis. His pallbearers included Sir Elton John AIDS Fundation and Phil Donahue. His funeral was also attended by @MichaelJackson.
Sir @EltonJohn performed a song he wrote in 1969, Skyline Pigeon, at the funeral. White also inspired him to create @ejaf.
On the day of the funeral, former President Ronald Reagan wrote a tribute to White that appeared in The Washington Post. This was seen as an indication of how White had helped change the public’s view of HIV AIDS, especially when considering Reagan’s indifference to the virus. By the time he finally addressed the epidemic in 1987, nearly 23,000 Americans had already perished.
A Mother’s Unconditional Love
Story & Recording by Aaron Holloway
I never even told my mother I was gay and she didn’t know. While lying there in what I perceived to be my deathbed, I thought that my mother would abandon me. She never did.
I was a graduating senior at Prairie View A&M University in Texas and on my spring break visiting my mother when I was diagnosed with AIDS and end-stage renal failure. When I arrived home, I was greeted very warmly by my mom. Her retirement party was that night. Over the weekend, my health continued to deteriorate. On March 10, 2008, the anniversary of my father’s passing four years prior, my mom insisted on taking me to the emergency room. She drove us to the hospital, where I was born and where my father passed away. I was beyond terrified.
After check-in and having my vitals taken, the nurses began taking several laboratory tests. Within 24 hours, I was checked into the hospital and had an AV fistula implanted into my heart. I was diagnosed with end-stage renal failure. The nephrologist assigned to me was shrewd and proclaimed that my kidneys were “gone” and I would never urinate again.
The same general physician I saw previously in the presence of my mother informed me about my AIDS diagnosis, and thereby outed me — twice. I will never forget what that physician said to me.
“Wake up! It’s AIDS. Are you surprised?”
Miraculously, during one of my dialysis treatments over that summer, my kidneys regained their proper function. I was able to return to my undergraduate studies.
In May 2009, I graduated cum laude from Prairie View A&M University with Bachelor of Business Administration in Management degree. I also graduated cum laude from Texas A&M University – Commerce with a Master of Science in Technology Management degree.
Brad Davis, 1949–1991
Story & Recording by Susan Bluestein
Brad Davis shot to instant stardom one night in 1979 in the south of France at the Palais theater. It was the night the movie Midnight Express premiered at Cannes International Film Festival. Before that, Brad had worked as an actor in some prestigious TV shows like Sybill with Sally Field and the mini-series Roots. But, that night before the premiere, no one knew who Brad Davis was.
I’m Susan Bluestein; I was Brad’s wife. I realized then that the experience of a five-minute standing ovation and the commotion that followed would be forever etched in my memory. It was shocking and thrilling to see this short, skinny kid from Tallahassee, Florida and this middle-class Jewish girl from New York frozen in time amongst the movie elite. It was like a dream, not real or tangible, but wonderful. Brad won a Golden Globe award for that performance.
However, around the same time, Brad’s life changed in a very different way, and it wasn’t like a wonderful dream. Brad had just finished a movie, A Small Circle of Friends. His IV drug use and alcohol addiction were at their height. After that movie, he went to visit a friend on the set of the film Heaven’s Gate. He came down with the worst case of shingles and swollen lymph nodes the doctor had ever seen.
Today, they probably would have tested him for HIV immediately, but no one knew this in 1979-1980. Through a miracle and much hard work, Brad got sober in 1981 and tried very hard to repair his reputation in the industry. We were overjoyed to have our baby, Alex, in 1983.
In 1985, Brad went to Cedars Sinai hospital to donate blood, as he always did after Alex was born. He had gotten an acting job in Italy for a few months. Cedars Sinai sent a letter to the house informing him that he was HIV positive. Brad had just finished starring in Larry Kramer’s play The Normal Heart at the Public Theater in New York. This, of course, turned out to be very prophetic.
At first we didn’t really believe it or know what to think. We had so many questions. Was I infected? Was Alex? What should we do and how should we live going forward?
Fortunately, Alex and I tested negative. We decided to keep Brad’s diagnosis secret so Brad could work as long as possible. It had been hard enough for him to resurrect his career. We didn’t think much about it at the time. Brad looked and felt good, but a light had gone out of him, carrying this burden of his past. By then, he had been infected at least five years, maybe more.
He refused to get any medical care for fear of discovery. But in 1989, he wasn’t feeling well and knew he needed help from a doctor. Luckily, he was able to reach out to his friends Larry Kramer and Rodger McFarlane. By then they were major AIDS activists in New York. They sent him to a wonderful doctor, who agreed to see him in secret along with many other actors we found out later.
After his last job, A Habitation of Dragons, he picked up a parasite and couldn’t recover. It was 1991. He didn’t want Alex, who was 8 years old, to see him die a horrible death. He took his own life while he was still able, on September 8, 1991.
Brad’s death shocked Hollywood. Brad had wanted to tell the truth of how he died and what he had been through hiding the truth that he had AIDS. There were many differing opinions as to whether he would have been hired if producers and directors had known.
The truth is he did some of his best work during that time, a mini-series, Robert Kennedy and His Times, being his favorite. He loved that show and felt it was his first really adult role. Brad wrote a proposal exposing the fear and discrimination at the time in the Hollywood Industry about anything related to AIDS. It later became a book.
We made the most of the years we had together with Brad. There was always music, lots of laughter and wonderful friends.
Brad’s motto was always “Don’t postpone joy.” He never did!
Bearing Witness to Transformation
Story & Recording by Ed Wolf
I met a young gay man on the AIDS Unit at San Francisco General Hospital when I worked there in the ’80s.
He had just been diagnosed with Kaposi’s sarcoma lesions in his lungs and was told he had a short time to live. The medical team contacted his parents, who lived far away, and they came immediately.
During a five-minute meeting with the doctor, they found out their son was dying and also that he was gay. When I met the father, he told me it was harder for him to find out his son was a “fag” than to hear that he would be dead soon.
It took almost three weeks for their son to die. Every day, his parents watched as the nurses — primarily lesbians and gay men, some with AIDS themselves — continued to care for him, clean him and lessen his pain as much as possible.
I was there the morning he died.
When the father stepped out of the room and saw me, he hugged me and cried and cried and cried. He was as tall as me, and his grief was so vast. I remember thinking we were both going to fall down.
He kept saying his boy was gone.
The next day, the parents returned to say good-bye. They thanked everyone for their love and care of their son. The mom took me aside and said she was going to miss me. She said, smiling, that she and her husband had talked and wished they could adopt me and bring me home with them.
I kept in touch with them for a while. They started a support group for Parents of Children with AIDS in their community.
Steven Arnold, May 18, 1943 – August 6, 1994
Recording by Ellen Burstyn
Story by Irwin M. Rappaport and Ellen Burstyn
Photo courtesy of The Steven Arnold Museum and Archives
My late friend Steven Arnold was a visionary surrealist filmmaker, artist, set and costume designer, jewelry designer and overall counter-culturist whose works can be seen in the collections of the Whitney Museum of Art, the Museum of Modern Art, the Cinematheque Française in Paris, and the San Francisco Museum of Modern Art, among others.
I’m Ellen Burstyn, and I met Steven, oh, somewhere in the late ‘70s, yeah I would say ‘78. He was brought to my home where I was doing a production of Midsummer Night’s Dream outside in my garden. He was brought to my home by a close friend of both of ours, and he videotaped the production.
And we became friends immediately. Vast, deep friends. He really felt more like a brother than a friend.
Steven’s film Messages, Messages premiered in San Francisco in 1969 at the Palace Theater in North Beach, where he later was hired to program called Nocturnal Dream Shows, a first-in-the-nation series of midnight movies.
The avant-garde drag troupe “The Cockettes” got their big break there and later launched legendary gay artists Divine and Sylvester. Messages Messages was presented at the Cannes Film Festival’s prestigious Director’s Fortnight in 1970.
At the Whitney Museum screening of his second film Luminous Procuress, Steven met iconic surrealist artist Salvador Dali and he soon became his friend and protégé. According to Vishnu Dass, director of the Steven Arnold Museum and Archive, Dali inspired Steven to “translate his dreams, visions and fantasies into art.”
The result was Steven’s trademark series of tableaux-vivant, which were produced in his Los Angeles studio called Zanzibar which became a hangout for visual artists, musicians, designers, drag queens, hustlers and others outside the cultural mainstream. And me, by the way.
These theatrically staged black-and-white photographs seemingly sprung from his sub-conscious mind. They are elaborately constructed — often campy — homages to imagined queer gods and goddesses. Spectacular, playful dreamworlds filled with imagery of non-binary sexuality, mythology, inter-connected spirituality, and divinity.
Perhaps not surprising for a man whose childhood bedroom was decorated in the style of Louis XIV, who as a teenager smoked opium and marijuana and drank champagne and cough syrup, and who lived for months on the Spanish island of Formentera, where he and friends took LSD daily, lived in caves and experimented with painting and costumes.
A documentary film about Steven and his art, Steven Arnold: Heavenly Bodies, was released in 2019, narrated by Angelica Huston.
Steven was diagnosed with AIDS in 1988, and passed away in 1994.
When he died, he was laid out in a friend’s home and decorated with flowers. He had a gardenia between his big toe and his next toe. He had beautiful artifacts around him.
He was like that for three days, as so many of his friends came and sat with him. When the men came to take him away for burial and introduced themselves, one of them was named Angel.
Jim Brumbaugh, 1948-1991
Story & Recording by Ellen Matzer
One of the bravest men and patients I remember. They were all brave, but Jim Brumbaugh (1948-1991) faced this illness with a calm and realism we didn’t see often.
He was in and out of the Hospital many times. He had a multitude of opportunistic infections throughout the year he was ill. He had a wonderfully supportive partner and family that was also rare back then.
I remember one of the times, Jim knew he was close to the end. I went into see him. He was sorting out imperial topaz gem stones. I had never heard of that stone before and he explained to me that it was one of the most beautiful topaz stones there was. He was sorting out the stones to give them to all his nieces after he passed.
I remember sitting with this wasted yet still handsome man, looking at each stone and talking to his partner about which family member should get which stone. It was as if Jim was having a normal conversation about anything. I remember thinking, how can he do this so matter of factly? His partner had also known that my 2-year-old son liked elephants. The next day, he came in with a bandana that had elephants on it. I still have it.
Jim, I miss our talks. I miss you, how brave you faced every speed bump, every obstacle. There were so many we lost back then. I try to remember everyone’s face, something special about them. Most of them, I do.
Valery Hughes and I wrote the book Nurses on the Inside, Stories of the HIV/AIDS epidemic in NYC to remember this generation lost. To warn against it happening again.
We must know the history of the awful epidemic. There are too many people that don’t remember, were too young or not even born yet. It was a holocaust. We must honor all these brave men and women. We must never forget they were here.
Richard Dominguez, 1954-2008
Story & Recording by Patrick Johnson
My uncle Richard Dominguez was born in Los Angeles, California and resided in Las Vegas, Nevada with his partner Herbert (Burt) Earl Synder for eight years prior to his passing.
Uncle Richard was a graduate of the University of Southern California. He was in management at AT&T and retired after becoming disabled due to AIDS. He was an animal lover and was dad to his beloved terriers, Cagney and Lacey.
I never really knew my Uncle Richard personally. He was sort of the distant relative that I knew existed and seen a few times here and there but never really knew untill I turned 16 in 2003. I came out to my Mom and Dad, and I was very fortunate because I was given love and acceptance. My Dad (Uncle Richard’s brother) told me that he loved me for who I am.
I don’t remember how long after I told them that my Dad woke me up one weekend and said to get ready. He didn’t tell me where we were going. We drove for hours. My Dad, who is a man of few words, still wouldn’t tell me where we were going after I inquired. After hours of driving, we finally pulled up to a random house, and that’s when he told me we were visiting my Uncle Richard and Burt.
We sat around, talked, had dinner. Then my Uncle Richard said he wanted to talk with me privately. We went to his office and the first thing he said to me was: “Your Dad brought you here, because he loves you.”
I instantly broke down crying. My Uncle told me that there was no shame in who I was, that yes, life will be hard but that it’s okay to be who I am. To stand tall as a gay man. He told me his life, much of which I have forgot after all these years. He taught me the importance of safe sex. He said when I get married, he wanted to be there.
Sadly, I never saw my Uncle Richard again after that day. But we spoke on the phone a few times through the years.
When he died, I felt a certain heartbreak that I hadn’t felt before, or since. How I wish he was here today; there’s so much I would love to talk with him about. Funny though, to this day, he’s one of the greatest influences of my life.
Legacy of Survival
Story & Recording by Brenda Goodrow
When I was 6 years old, my adoptive mother told me I was born HIV-positive. That same year, in 2003, my biological father passed away from AIDS-related complications. His family still believes that it was non-AIDS related cancer, but my childhood nurse, who also took care of him at the adult clinic, told me that he refused his antiretroviral treatment until he died. Suicide by AIDS. I grew up telling people it was a drug overdose.
When my birth mom, who everyone expected to pass away from AIDS sooner than later, died when I was in high school in 2009, I was finally able to tell people one truth about my parents: My mom was a homeless drug addict who died of hypothermia outside of a hospital in the dead of winter. I always left out the part about her being HIV positive, though. It was easier to keep my secret that way.
It’s taken me a long time to find forgiveness for them; to not view their deaths as them abandoning me to live with HIV on my own. But in my darkest moments of living with HIV, I found compassion for them in ways I never thought I would. I realized they were just humans who were hurting, too, and if they felt anything close to what I have then I understand why my mom kept choosing drugs and my dad chose to not fight for his life.
Ever since going public with my status and sharing my story, I’ve found so much healing in the amount of love, compassion, and understanding people have extended to me.
In my short-term experience with activism, I’ve heard a lot of talk about the term “Long-Term Survivors,” and how that encompasses way more than just our HIV statuses. People living with HIV are also often survivors of abuse, domestic violence, homelessness, drug addiction, mental illness, and so many other things.
Despite everything, both of my parents were fighters until they died, in more ways than one. I am their surviving story and I’m proud of that. I like to think they are, too.
Robert Wagenhoffer, July 5, 1960 – December 13, 1999
John Curry, September 9, 1949 – April 15, 1994
Recording by Tai Babilonia
Photo courtesy of CBS (from left): Tai Babilonia & Randy Gardner, John Curry, and Robin Cousins & Elizabeth Manley
I’m Tai Babilonia. When my ice skating partner Randy Gardner and I turned professional after the Lake Placid Olympics in 1980, we had a new family called the Ice Capades — which at that time was the number one touring ice show in the country.
In 1983, after we completed our three-year contract with the Ice Capades and started touring with other shows, I started hearing that some of the guys that Randy and I toured with from the Ice Capades chorus, a.k.a. “Ice Cadets,” were suddenly dying from this mysterious disease called GRID (gay-related immune disease), which would later be named AIDS.
It seemed like we were losing someone every month. I started keeping a list of our friends from our beloved skating family, and also started including friends from the dance and entertainment world.
My list was getting long. It was at least 62 friends that had died by the early ’90s.
Because it was getting too emotional and heartbreaking for me, I stopped adding names of loved ones that we had lost. I was numb. That list is now tucked away in a very special place, and I honor the beautiful friends that we have lost by sharing my story and bringing awareness to this horrific disease.
Talking through all of this, it reminded me of a very special show we were in. Randy and I performed in the first AIDS-related skating benefit in 1989 called “Skating for Life” at the New York State Armory. The show benefitted the Design Industries Foundation for AIDS (or DIFFA) and the St. Vincent’s Hospital Care Program, as well as a fund for skaters and other athletes with AIDS.
There are two notable skaters, and the dearest of friends, that I’d like to remember now.
Robert Wagenhoffer was a national-level medalist in the late ’70s who competed in both singles and pairs. In 1979, he won the silver medal at the U.S. Nationals and was on two World Teams. He retired from amateur competition in 1982. He then joined Ice Capades, participated in many professional events, and became a two-time World Professional Champion in Jaca, Spain.
Robert was known for his innovated skating, the height of his jumps, and entertained thousands. Randy and I knew Robert since we were all kids, as we took from the same coaches. He was like family to us. Robert died from complications of AIDS in December 1999.
And of course, there’s the legendary John Curry, of Great Britain. John was a five-time British Champion, and the 1976 European and World Champion. In one of the most memorable free skates in history, he won the 1976 Olympic Gold Medal. He is remembered as one of the greatest stylists and artists in figure-skating history.
Following the 1976 World Championships, John turned pro and founded a touring skating company that mirrored the same lines as a traditional dance company. He even expanded his repertoire to choreography in both skating and dance, and appeared in two shows on Broadway as an actor.
In John’s last professional appearance in 1989, we worked together on a CBS televised special called the “Ice Stars’ Hollywood Revue.” It was the last time we saw John.
John’s legacy remains strong even today, as the Ice Theatre of New York and the next Ice Age have both been greatly inspired by John’s Olympic status to elevate figure skating as a legitimate performance art.
John Curry died from complications of AIDS in April 1994.
Michael Norman
Story & Recording by Elsa Sjunneson
I don’t remember being told my father was dying. I must have been too young when I internalized this information. I always knew he was sick and since my dad was an AIDS educator, it wasn’t like I didn’t know what the disease did.
It was the ‘90s. We were only beginning to know what AIDS was and, at 8 years old, I only understood what it had done to my father. My memories of these days are so scattered. I try to pick up the pieces. I’m still missing some of the pieces. I have letters written to him and written from him to others. I have his artwork. I have his writing. I have the play he wrote about his disease. People tell me I look like him. I have been told that I dance like him. But I cannot draw like my father and our writing styles are vastly different.
As a child, I remember that I clung to the idea of his physical remains – his ashes, because they were the only reminder I had that he had been there at all. I don’t have a gravesite but I do have physical touchstones. I didn’t know that my father could read German or that his artwork wasn’t always abstract and that the things I love in art are influenced by the work he did when I was around him.
I remember going with him to teach AIDS education classes to adults. I have letters thanking him for his teaching and these are the things I choose to carry with me.
It happened to me, it has happened to others: their parents die from AIDS but instead of everyone understanding it like they would cancer or another terminal illness, the sideways glances of misunderstanding cloud their faces. The politics of sex education and gay rights muddle the story of my past and I am forced to politicize the very nature of my identity.
The teddy bear gay pin sits in my jewelry box. The ACT UP pin sits next to it. The photos of drag queens and letters from family sit in my office, and I need to find a way to synthesize the historical image of my father with the reality.
He was Tanya Ransom, a drag queen. He was Michael Norman, an artist, educator and playwright. And he was a patient. And he was my father.
Alexis Arquette, 1969-2016
Story & Recording by Patricia, Richmond, David, and Rosanna Arquette
Photo by John Roecker
Patricia Arquette:
We are honored to be asked to memorialize our sister Alexis Arquette. You’ll first be hearing me, Patricia, then our brother Richmond, then David, then our sister Rosanna.
I would like to highlight what an incredible artist Alexis Arquette was. As an award-winning actor, her works spanned the screen, theater and cabaret. As a cabaret singer and M.C. performing at top-level nightclubs, Alexis was a powerhouse, often performing as her self-invented alter ego “Eva Destruction.”
On stage, she starred in Libra with the Steppenwolf Theatre Company for director John Malkovich. Alexis received praise in VH1’s reality show The Surreal Life in 2005, embodying a strong trans role model at a time when transgender representation was literally non-existent.
Her long career in film began with her widely heralded performance as Georgette in Hubert Selby’s Last Exit to Brooklyn. She continued with notable performances in Terminal Bliss, American Playhouse, Hollow Boy, Of Mice and Men, Threesome, Jumpin’ at the Boneyard, Grief, Jack Be Nimble, Pulp Fiction, The Wedding Singer, Bride of Chucky, Killer Drag Queens on Dope, and Wigstock, among many others.
Alexis studied Fine Arts at Otis Parsons. Like her, her paintings are beautiful, evocative, strong, uninhibited, and spirited, encompassing diverse themes such as fantasy, other-worldliness, religious struggle, and erotic art.
Her series of video compilations from local television documented societal norms of the time, capturing blatant anti-LGBT bias. These works also examine human sexuality, desire and desirability through her observing gaze.
When Alexis was dying, she said about her nephew’s work as an artist, “You signed your name on the tree of life.” But I want to say, “Alexis, that you are Darling, you are Brave One, you signed your name on the tree of life, and you will never be forgotten.”
Richmond Arquette:
Alexis was an original, wildly creative, fun and funny, every bit her own person. Her absence continues to be deeply felt. The world is missing out and I wish she were still alive.
Alexis grew up with a president who refused to even mention AIDS by name, let alone take any measures to prevent its spread. She heard the blowhards who judged, criticized and condemned her entire life. I believe the insensitivity in our culture is part of what wore her down.
Death is often reduced to statistics, as if each number isn’t a complete life, intricately interwoven with the lives of those who love them. The recent worldwide effort to address COVID begs the question, why is it not always this way? Why are we not as a species more reverent of life?
I promise you that humanity would be richer if Alexis were still around, and I’m sorry for those of you who never got to be around her.
David Arquette:
Alexis was always ahead of her time. I shared a room growing up with Alexis. He taught me everything I knew about art, Hollywood, fashion, music. She would turn me on to bands years before they became popular.
I’m going to bounce back and forth between pronouns, because that’s what Alexis did.
She was a fighter, always standing up for herself and others. Anyone who knew Alexis loved her. The gangsters, the skaters, the club kids, the runaways. She was a Pied Piper wherever she or he went.
When Alexis decided to live fully as a woman, she also decided to only play female or trans roles as an actress. Again, she was ahead of her time. Despite her career suffering because of that decision, she taught us to stay true to ourselves and fought for us to see a world that we had just not caught up to yet.
Rosanna Arquette:
Alexis passed away before we had today’s language around respectful gender identity. There was no “They/Them” yet.
In this moment of reflection on who our sister was, I’m reminded of just one of the many moments with her where her individuality was crystalized for me. It was a conversation we had in the hours before she left this life. I asked Alexis what clothes she wanted to be dressed in before her cremation. Alexis had every kind of outfit, every type of fluid expression. Fashion was one of the many ways that she shared her creative voice. And Alexis answered, “It doesn’t matter! Me! I’m just me!” We didn’t have the pronouns “They/Them” yet, but that was her message in her final moment with me.
It’s important to recognize and memorialize when any artist breaks new ground. Our sister Alexis Arquette was a pioneer. She was compelling, hypnotic, she drew you in. And she knew she had this power, whether with an individual friend or an endless audience of strangers. She could instantly hold you in the palm of her hand. And when she did, she showed you, me, us, all how to live a life fully self-expressed. She showed us where our own power resides.
Alexis challenged me to be who I am in every moment that I live with fearlessness and pride. In this moment of reflection on who was Alexis Arquette, they were a bad-ass!
Robert Michael Painter, 1949-1983
Story & Recording by Ryan Michael Painter
I never knew my father in a way that makes writing about him easy. He is enigmatic, a man of masks. An ever changing follower of fashion. Mythical, Mormon, gay, incongruent. Contradictory. A gentle someone who cried the only time he spanked me.
Robert Michael Painter — Mike to his friends and Dad to me — was the first person in Utah to be diagnosed with AIDS. It was the summer of ‘83. I had just turned seven years old.
My parents divorced before I knew they were together. Mom didn’t know he was gay; he didn’t say. Still, she kept him close to us. She was afraid that someday all the world’s cruel nouns and adjectives would convince me to push him away.
Dad and I watched Dallas in the warm glow of his den. He set an alarm so I would never miss The Smurfs on Saturday mornings. He drank Diet Dr. Pepper in glass bottles. Used plastic milk containers filled with water as weights. He tanned in the bathroom. Listened to the Village People’s “In the Navy” as he combed my hair.
He knew people with personality. He went to a party dressed in a diaper; his boyfriend Bryan was dressed as a nurse. I smelled coffee for the first time in the basement apartment of one of his friends. Watched, but didn’t understand, Star Trek: The Motion Picture with him and someone forgotten on a date.
We appeared in a print and television Father’s Day ad campaign for a local mall. I saw the commercial once. He talked about land he had purchased in Montana. Said we’d go there someday. He left out that it was part of a polygamy compound.
I loved riding in his Mercades convertible with the top down and the sun on my face.
I’ve completely forgotten the sound of his voice.
He died on September 19, 1983, but his grass marker only reads “Robert Michael Painter 1949-1983.” His parents feared that if they included exact dates, someone would know that it wasn’t just pneumonia that killed him. I was still seven years old.
I remember missing him more than I remember him. So I wrote a book for him, Mom, and me called @theunexpectedson. It’s unbelievable and completely true. There’s just not enough of him in it.
Dad, I love you.
Elizabeth Glaser, 1947–1994
Ariel Glaser, 1981-1988
Story & Recording by Jake Glaser
“My life had certainly not turned out the way that I expected, but while tomorrow would bring what it would, today was glorious.”
– Elizabeth Glaser, wife, sister, mom and angel
On a Los Angeles summer night, in a chance meeting at a stop light on Sunset Boulevard, Elizabeth Glaser, a second grade school teacher, and Paul Michael Glaser, a television star from Starsky & Hutch, rolled down their car windows and found one another on this spinning rock in the cosmos to create a family whose creation, passion, love, fear, tragedy and sacrifice would change the world.
It was in 1981 when my mother, Elizabeth Glaser, gave birth to our guardian angel, our guide in life, Ariel. While in labor at Cedars Sinai in Los Angeles, my mother hemorrhaged and lost seven pints of blood. In order to save her and her baby, a blood transfusion was necessary, one that would forever change the path of their lives. What began as new virus predominantly showing up in gay men, the Human Immunodeficiency Virus was spreading fast and amongst many communities, not just the homosexual community.
My sister Ariel became sick. She would sink into sickness one week and bounce back the next, signs of what most called an extreme flu, but became known soon after as the global health crisis we now know as AIDS.
It was soon after this that I was born, HIV positive and with an unknown future. After years of antibiotics, and medications never designed for the fragility of a child’s immune system, my sister’s HIV turned into AIDS and took my sister’s life at age 7.
A mother’s response to losing her child is like a crack of thunder across the world. My mother knew she lived with this same virus, and so did I. Her only choice was to do something about it. So she asked for help, used her skills of getting people to come together and work together, and applied it to the start of the Pediatric AIDS Foundation, in an effort to raise essential funds for medical research into pediatric treatments for HIV.
She smashed down politicians’ doors, called Hollywood to action with my father, raised the funds, and built a team of interdisciplinary medical researchers to start asking questions to which we did not have the answers. She used every last bit of her energy to humanize this issue, speaking at the 1992 Democratic National Convention, advocating in Washington, and telling her story to the world in hopes of bringing enough light to this dark place so our future could be bright.
In 1994 after witnessing the creation of the first antiretroviral medications and seeing a step in the right direction, her health declined and my mother passed away at the age of 46, when I was only 10 years old.
The spark that she ignited, lit up the world. Elizabeth Glaser and so many others sacrificed their lives to provide us the opportunity we have now, to create a world free of HIV, to make sure no one dies from this disease and to make sure no child is ever born HIV positive again.
Through the collaborative efforts of The Pediatric AIDS Foundation, a medication that was designed for a different use was applied to stop in-utero transmission of the virus from mother to child. The Pediatric AIDS Foundation has grown into a community health organization in 19 countries, with over 5,500 sites across the globe and over 30 million women reached to prevent the transmission of HIV to their babies.
Today we are not only an HIV-focused family, our programs support a variety of health issues, most recently being COVID-19.
The ripple that Elizabeth Glaser and Ariel Glaser left in this world will forever be reinforced by each and every one of us who choose to do something when we feel we can’t, who choose to run into our fears when we feel helpless and show each other that even when we feel all hope is lost, in the darkest moments in the darkest places in our lives, light will always prevail if we choose to turn the light on.
Robert Reed, 1932-1992
Recording by Eric McCormack
Story by Irwin M. Rappaport and The AIDS Memorial
Robert Reed, the actor best known for his role as Mr. Brady on the long-running TV series The Brady Bunch, kept his homosexuality a secret from the public. According to his fellow cast members, leading a double life wasn’t easy for him.
Florence Henderson, who played his on-screen wife Carol Brady, recalled in an interview with ABC News: “He was an unhappy person … I think had Bob not been forced to live this double life, I think it would have dissipated a lot of that anger and frustration.”
I’m Eric McCormack. Things were different when Will & Grace entered America’s living rooms. The culture in the U.S. was more accepting of gay actors and gay roles.
But when The Brady Bunch first aired in 1969, hiring an openly gay actor as the perfect father of the perfect TV family would not have been possible. Even Carol Brady’s backstory had to be changed from a divorcée to a widow in order to placate nervous TV executives.
The series, which lasted five seasons, led to TV specials, a spin-off series and feature film adaptations, and is still in re-runs today, which is great, but Reed had been trained as a Shakespearean actor. He had moved to LA to do a TV adaptation of Neil Simon’s Broadway hit, Barefoot in the Park, in which Reed had succeeded Robert Redford as the star. So a TV sitcom wasn’t what he’d envisioned for his career. Rather than revel in the success of the show, he was unhappy and felt stuck in a long-running show he didn’t like.
Nonetheless, the cast became close, according to show creator Sherwood Schwartz who told ABC News: “They were a family. They became a family. They became very attached to each other … Even Bob Reed, who was a personal pain to me, loved the kids and they loved him.”
Reed is reported to have personally paid for a trip for his television kids to New York and London.
After The Brady Bunch, Reed was able to get some of the more serious roles he coveted, and was recognized for that work. He was nominated for Emmy awards for his roles in the mini-series Roots and Rich Man, Poor Man and for the TV series Medical Center. At the end of his life, he finally found the work that he felt was most fulfilling: teaching Shakespeare at UCLA.
Said a friend, “It was the happiest he ever was. He just loved it.”
Robert Reed died in 1992 at age 59. His death certificate listed as cancer as the cause of death, but also showed that he was HIV positive.
An Entire Family, Gone
Story & Recording by Cynthia Piña
My mother, father, sister, brother and uncle all succumbed to complications from HIV/AIDS. My entire immediate family, gone! By the age of eight, I said goodbye to my mother and then my father and so on. But I’m here! I’m here to say they matter, they were wonderful beings. They will ALWAYS be remembered for who they were, NOT by what they died from.
They had names: my gorgeous music aficionado mother, Innocencia Caban, “Tita”; my artistic and strikingly handsome father, Amilcar Piña, “Al”; my beam of light baby sister, Cristina Marie Piña; my nautical ultra charismatic brother, Juan Pablo Barroso, “Pipo”; and my fun loving uncle, Angel Piña.
We all have a unique story and they do as well, and I wish I could share them with you – but for now just know this … they all left this earth way too soon and left a hole forever in my heart.
Does it really matter what disease you contracted or what you died of? Or does it matter how pure your heart is and how deep you loved? They deserve respect and honor and I give them that ’til we meet again, my angels. Love Big and Love Deep.
By Cynthia Piña
Anthony Kabungo, 1948-1992
Story & Recording by Joan Dellavalle
Dear Dad,
This day, the 21st of August 1992, we received the sad news of your passing. We all knew the day will come as each passing day you become more and more frail. You would be in and out of hospital sharing a room with other sick patients, everyone fighting for their life as doctors tried to find out what AIDS was.
When we came to visit you, we observed some patients sleeping on the floor because families could not afford beds for them or the hospital didn’t have enough beds. Those days were hard to witness. I still have visions of grown men crying in pain. I still have visions of you crying in pain in silence and singing “All to Jesus, I surrender.”
In the early 1990s. AIDS was not mentioned — they would call it TB. Watching you go through pain
everyday was heartbreaking. Most third-world countries had no access to medicine, then the only
thing they had was prayer and hope.
You lost your job as soon as they found out you had “that disease” as they called it. Oh, I remember how everything changed for us in a second. I remember how quickly gravity pulled us down. I also remember how you found strength to instill wisdom in me.
I am so grateful to have had you as a father.
1992 feels like only yesterday when you took you last breath to another journey. AIDS took you so quick, like the speed of light. I know you are not in pain and this gives me hope that all those amazing
people out there trying to find a cure of what took you so fast that one day will find a cure.
I advocate for you, my sister and many loved ones we have lost from this cruel disease. I continue to advocate for loved ones living with HIV/AIDS. I advocate to give strength to families and friends watching loved ones fight this battle. I am grateful to have found new friends at The AIDS Memorial that can feel this pain like I do.
Today, I sing our favourite songs. “All to Jesus, I surrender. Take my hand, Precious Lord, lead me
Home.”
It doesn’t matter whether it has been weeks, months or years, the pain of losing you always pinches
me like lightning for a lifetime.
Dad, you fought a good battle.
Christine Bessey, 1927-1994
Story & Recording by Diana Keough
It wasn’t your usual family gathering. My mom had summoned all six of her children home, so she could go from room to room, assigning us her possessions. She was dying of a terminal illness, already a year into her death march. One down, three to go, it turned out.
She told one of my brothers, “I think this will look nice in your front hall,” her hand resting on a chest of drawers.
And so it went, on and on. A macabre ritual demanded by our well-organized matriarch, able to square off against Death in the realm of the mundane, but unable to face the broken and stressed out relationships looking right back at her.
“And I don’t want any fighting about any of this after I’m gone,” she said. This was my mom at her finest: in control of both her possessions and our fragile feelings. We were her obedient children once more, as well as contestants in her game show of random kindness.
I didn’t want her stuff, but then again, I did. For that was the yardstick of her love. She gave to her favorites, her favorite things, with no extra charge for her tangled web of strings attached. I was a little girl, again, and I hated it. I just wanted to hear her say how she loved me. But a family heirloom would have to suffice because it was the only love she knew how to give. When all of her earthly possessions were dispensed, she told us there was one more thing.
“I want you all to know,” she began slowly. “That when I feel the end of my life is near, and while I’m still able, I’m going to take my own life.”
She sat looking at us, with her hands folded tightly and placed demurely off to the side of her lap. Her spine was rigid and straight against the back of the chair. Her chin was raised high, her legs crossed at the ankles.
“My mother knew about two affairs but thought they were with women. In spite of that, she stayed with him as long as she did because she was a “good Christian woman,” and was afraid of what other people would think. “It takes a lifetime to build a reputation and a second to destroy,” she often told us. Fear killed them both.
One of my favorite memories of my dad — and I have many — is making Christmas cookies. I have so many great memories of my mom but we had a difficult relationship. Before she died, we healed a lot of our relationship and I was able to forgive her.
My dad always said he thought my mom looked like Grace Kelly and, I have to admit, I sort of agree with him. She was beautiful, stylish and really smart. In a different time, I think she would’ve been a successful entrepreneur.
My dad passed away in July, 1990, in an AIDS hospice in Cincinnati with me and three of my siblings by his side.
My mom passed away in a Catholic hospice in Milwaukee, her door plastered with bright red warning signs about her disease, with me and my oldest sister holding her hands.
They were both only 67 with a lot more life to live. They never had a chance to watch me grow into the woman I’ve become. My four sons never had a chance to get to know them or spend time with them, which is a damn shame. Their deaths — the deaths of anyone from AIDS is such a waster and so damn senseless.”
The physical pain she had feared so much, was controlled with medication and never came close to the emotional agony she twisted in prior to her terminal diagnosis.
“Life is such a precious gift from God,” she told me. “Don’t waste your life or any of the time that God gives to you. Promise me that, okay?”
We battled for so long, both of us feeling completely justified, and so full of pride and self-righteousness. The deadline of her death launched her on a soul trip and in taking me along, we were able to call a truce, leaving me to mourn what could have been, not the torment of what was.
I wonder if we would have been able to let go of our anger without the crescendo of her ticking body clock. All I know is what I saw: In the hospice, as she lay gasping for breath, holding my hand, looking right into my eyes, she asked, “This is the sickest I’ve been isn’t it?” I held her hand and thanked her for being the best mom she knew how to be. I thanked her for so many long talks and hugs and for not killing herself. She smiled and squeezed my hand back with all her might as she struggled to say, “I would’ve missed out on so much.”
Me too, mom. Me too.
Tony Richardson, 1928-1991
Recording by Jessica Lange
Story by Jessica Lange and Irwin M. Rappaport
“I hated all authority,” said Tony Richardson to a magazine interviewer in 1963. So, he was a perfect fit to be a director. I’m Jessica Lange.
In 1991, Tony directed me in Blue Sky. Blue Sky was his final film. Tony died of AIDS on November 15 of that same year at the age of 60, never publicly revealing his bisexuality until he was diagnosed with HIV in 1990.
Although he may have hated authority, you wouldn’t know it from the way he talked with his actors as we collaborated in the art of movie-making. Tony was and will always be one of my very favorite directors. He taught me so much about filmmaking and acting.
Tony, an Englishman born in Yorkshire, directed 23 films. The first, written by John Osborne and starring Richard Burton and Claire Bloom, was Look Back in Anger, which Tony also directed as a stage play in London before it moved to Broadway and won the Drama Circle Critics Award. Other plays he directed and adapted into film were The Entertainers starring Sir Laurence Olivier and written by John Osborne, and A Taste of Honey about an inter-racial love affair.
His film adaptation of Tom Jones, starring Albert Finney, was nominated for 10 Academy Awards and won for Best Picture, Best Screenplay, Best Score and Best Director. Tony is credited with launching the careers of Finney as well as Alan Bates and Tom Courtenay.
Tony was among the directors associated with the British “New Wave” of filmmakers whose films in the late 1950s and early 1960s had a documentary style and often used real locations and untrained real people as background actors. Their social realism approach tended to focus on the lives of working-class people or challenged the dominance of the upper classes. They wanted to make films of substance, as a reaction against the lightweight comedies and horror films that characterized popular mainstream movies at the time.
In 1960, Richardson explained:
“It’s impossible to make films that appeal to everyone, and the only solution is to make them at a non-prohibitive cost, and to try to adhere to a strong, independent point of view that will appeal to at least one body of customers: the ones who want to be stimulated by provocative ideas.”
It was a great tragedy to lose Tony so early in his life. He was only 60 years old. We can only imagine the amount of work that he would have still done had he still survived, and the art he would have brought to all of us.
Tony was survived by daughters Natasha Richardson and Joely Richardson, from his marriage to actress Vanessa Redgrave, and his third daughter, Katherine Grimond. After her father’s death, Natasha joined the boards of the American Foundation for AIDS Research, known as amFAR, and God’s Love We Deliver, which provided meals for people with HIV and AIDS. She supported the organizations until she passed away in 2009.
Lance Loud (1951-2001)
Recorded by Rufus Wainwright
Story by Karen Eyres, Irwin Rappaport, and Rufus Wainwright
Photo by Pat Loud
On May 30, 1971, the TV documentary An American Family began filming in Santa Barbara, where the Loud family — including then-20-year-old Lance — opened their lives to the world. Considered the first reality TV show, the ground-breaking 12-episode documentary first aired on PBS in January 1973 on Thursday nights at 9:00 p.m. Lance Loud became the first reality TV star.
By coming out to an audience of 10 million TV viewers, Lance was the first openly gay person on American television and became an icon to the LGBTQ community. Although he was initially scorned by the media, the American public loved him and were inspired by his courage to be openly gay.
I’m Rufus Wainwright. I met Lance about 30 years ago in Los Angeles when I first arrived here and was signed to a big record label, and he interviewed me for — I think it was — Out Magazine. We then became great friends and had many a wacky night together doing all sorts of crazy things. And I miss him terribly.
In 1973, he moved to New York City, where he met Andy Warhol (whom Lance had long idolized). Lance and his high school friend Kristian Hoffman reunited and brought back their band The Mumps. His music career flourished for five years in the club scene, regularly selling out venues like CBGB and Max’s Kansas City, but the band failed to secure a deal with a major record label.
After the Mumps disbanded in 1980, Lance relocated to Los Angeles and became a writer. For 20 years, he wrote articles
for magazines, including Details, Interview, American Film and Vanity Fair. Lance also had a regular column in The Advocate, “Out Loud,” in which he mused on the ups and downs of living as a gay icon. He struggled with life in the public eye and became addicted to crystal meth.
Lance had long been dissatisfied with how An American Family ended, and wanted the public to see the Loud family as he knew it to be. With his health failing from Hepatitis C, liver failure and HIV, and realizing that he didn’t have much longer to live, Lance asked the original documentarians from An American Family, Alan and Susan Raymond, to film a final episode in the Loud story.
The Raymonds filmed Lance, along with his family, as he lived out his final days at the Carl Bean Hospice in Los Angeles,
and this would become the 2003 PBS special Lance Loud! A Death in An American Family.
In an article he wrote for The Advocate shortly before his death, Lance said, “Though for years I had told myself that all my unbridled drinking, drugging, and unsafe sex were going to lead exactly here, I’d never really believed it.”
On December 22, 2001, Lance Loud, the eldest son of a family made famous on TV in the 1970s, died of HIV-related illness at the age of 50. A memorial was held at The Chateau Marmont hotel in West Hollywood, where I sang a rendition of “Over the Rainbow” in tribute to Lance.
Richard Lawrence Reed, 1956-1995
Story by Michael Martin
Richard Lawrence Reed (February 28, 1956 – November 11, 1995) was a beautiful soul, a kind man and my first partner. We met serendipitously. It was August 1984 and I was supposed to be meeting a co-worker, but the plans fell through and I decided to go to another local bar.
As my favorite song of the moment — “My Heartʼs Divided” by Shannon — started playing, I boldly walked up to a man near the dance floor and asked him if he would dance. He agreed, and we became inseparable from that moment on for over 11 years.
I had just turned 19 and was smitten with this lovely man 9 years my senior. Iʼd never had anyone look at me the way Rick did. His blue eyes pierced my very soul. He was gentle, caring, selfless, humorous and had a way of making me feel as if I were floating on a cloud. He loved life, friends, family, the beach, plants, animals and the experiences that went with them all.
Like most relationships ours evolved and deepened after the initial stages of attraction, sex and lust. We become true lovers and friends and began to build a life for ourselves. Neither of us were rich or highly educated, but we were employed and did alright.
Rick always made me feel adored, loved and supported. He never let me down. We had fun learning each others’ idiosyncrasies, going out dancing, and nesting together.
Within a short period of time, Rick started saying he didnʼt feel quite right. It was never anything serious, a cold or a flu, and he would recuperate quickly. At the same time, we were just beginning to hear about the new mysterious “gay illness,” and he decided he wanted to get tested. We tested together sometime in mid-1985. Rick tested positive and I tested negative.
Our relationship was still in its infancy and there seemed no way it could be true, but it was. Rick learned what information was available and soon had a specialist doctor, the only one in the area.
There was never any question in my mind about leaving the man I loved because of a test result or its ramifications. At that moment, Rick was healthy and we were happy. Love doesnʼt end based on a test result.
For a while Rick’s health was fine and he was simply monitored. We proceeded with life as normal, with the exception of keeping his status a secret. Times were different then; there was so much misunderstanding, stigma and ignorance.
Slowly, Rick’s health deteriorated but not in the usual manner associated with AIDS. He never contracted pneumonia or sarcoma. It began with thrush and a gradual decline in his T-cell counts.
There was only one medication available — AZT — and Rick was put on it. Its side effects only made him feel worse. He began to have back problems, neuropathy and a general weakness. As his health got progressively worse, he was forced to stop working and go on disability.
Rick also decided to tell his parents about his status and illness. He was close to them and things were becoming more evident. I told no one, not my family, co-workers, supervisors or friends.
Gradually, due to the stigma surrounding the disease and our own fear, we withdrew from friends we knew would never understand or accept it. Outside of a few close friends, we were isolated but we made our life as pleasant and normal as we could.
Any benefits from AZT quickly stopped and Rick’s viral load kept increasing. We lived in a populated area of South Florida, and as the crisis was finally being acknowledged and funded, opportunities were presented for him to be a test subject for trial medications. I donʼt remember any of their names, but there were many. Rick tried whatever was available over the years, suffering their side effects and reaping little benefit.
Rick deteriorated both physically and mentally. It was gradual, painful and unstoppable. We did as much as we could together, whether it was household things or taking short trips to Disney, historical places, the mountains or visiting family.
In early 1995 on what was to be our last trip together, Rick became rapidly disoriented and argumentative. There had been signs of dementia prior to this, but this was a sudden onslaught. I cut the vacation short and headed home.
Rick was hospitalized upon our return and given what treatments were available. They helped very little. He had exhausted every available HIV medication and nothing could stop the degeneration of his body and mind. His spirit was depleted and he was tired of fighting. We returned home and hospice took over.
It was time to tell my employer about our situation, as I would be requesting time off and juggling caregiving with work. They were very supportive, and between that support and the help of hospice, our last month or so together was a little easier.
We remained deeply in love over the years through this ordeal and that love never wavered, not once — not even as Rick lay dying in a hospital bed in our guest room. He gave up on living, but never on us.
In fact, I think his love for me somehow gave him the courage to face death.
I had no encouraging words and no way to save Rick. All I could do was love him, touch him, and make him comfortable. At this stage, when someone you love is dying before your eyes, there are no words that can properly convey the experience.
Rick died in my arms around 5:00 a.m. on November 11, 1995.
Later, I would find notes Rick wrote to me when he knew the dementia was taking hold and he might not be able to say what he wanted to say. He made a scrapbook of memories of us filled with love notes, cards, an odd memento or just a written account of special moments of our life and love. He left me a book of writings, drawings, stories and poems he had worked on over the years.
Rick was not a famous actor or designer, but he was a loving example of all those whose lives were taken too soon. He made an impact and touched many lives, none more so than mine. He was my world. Although my world was forever changed and my heart ripped apart, the most important thing he left me was a feeling of love, never-ending love.
Rick was special and one of the most giving and loving men I have ever known. All these years later, I still I keep that love safe in a place in my heart for when we someday meet again.
Growing Up HIV+
Story & Recording by Noelle Simeon
Photo by Julie Ann Shaw
Hello, everyone. My name is Noelle Simeon. I have been living with HIV since I was two weeks old.
Back in November 1982, my mom was attending a routine ultrasound close to her due date. Her excitement of soon meeting her first child quickly turned to dread when it was discovered some of my intestines and other organs were on the outside of my belly, a condition called gastroschisis. An emergency c-section was ordered for a few days later. My birth was complicated, to say the least.
The first year of my life was spent in and out of the hospital with six surgeries and a blood transfusion. The main surgeon didn’t want to go through a possibly lengthy process of getting blood from my immediate family, so he recommended using the hospital’s blood bank. Now, this is a world-renowned hospital with some of the best surgeons, so my parents listened.
A few years later, my parents received a letter stating that because I received a blood transfusion, I should get tested for HIV. When the test result came back positive, the hospital suggested my parents keep my HIV+ status a secret to protect me from being alienated from our family or friends.
Ryan White, the middle school student who was banned from attending his school because he was HIV+, was freshly in the news, so my parents listened … at least for a little while. My mom told a few of her close friends whose girls were in my Girl Scouts troop, which quickly led to the entire troop finding out.
An emergency meeting was called. My parents organized for my doctor and another infectious disease doctor to come and educate the parents and Girl Scout leaders. Although only a few felt uncomfortable with me staying, as they didn’t want their daughters to get attached to someone who was just going to die, my parents chose to take me out of the troop. They didn’t want to stir any trouble.
Eventually, the rest of my family found out about my HIV status. I was loved and cared for, never feeling ostracized or unloved by anyone in my family. They are my biggest supporters to this day, and for that, I am forever grateful.
Growing up HIV+ was very alienating in other ways, however. Due to my health, I didn’t go to regular school and was home-schooled for a large chunk of my childhood. I didn’t attend school until about the third grade, and went to my first public school in seventh grade. Until then, my days were mostly spent by myself unless my cousins or family friends with kids were getting together with my parents.
But my lack of social interaction was changed when my parents found Paul Newman’s Hole in the Wall Gang Camp and Camp Laurel. Hole in the Wall Gang Camp is a camp for children with any kind of disease. It was in beautiful Connecticut, its sole location at the time, and I got to fly by myself for the first time in my life.
I remember thinking how green the ground looked as we landed. Camp Laurel is a camp specifically for kids infected with or affected by HIV/AIDS, so direct family members like my younger sister could also attend.
We didn’t need to worry about remembering to take our medications because the staff and counselors kept track. We could just be kids, and run and play and sing camp songs and ride horses and learn to fish and have our first crush and first kisses and tell campfire stories. They were the best summers of my entire childhood.
At one of these camps, I met a girl who was also blood-transfused with HIV at the same hospital as me. Her name was Anique, and she had been going to Hole in the Wall Gang Camp for a few years. Her last wish was to go for one last summer, and so her parents made it happen.
We had never met before, but there was an instant kinship felt between us. Anique even gave me a present: a cute, stuffed bunny that I named Benjamin. Unfortunately, she didn’t survive the drive back home and passed away.
Hers was the first death I experienced. I remember her coffin was so small, and it scared me without me really understanding why. I was nine. I still have Benjamin.
It was not my last death of kids from camp. I still remember and think of them often. Some of their names are Nathan, Billy, Dawn and Raytasha.
Living with HIV when you’re young is interesting. There is no specific time or incident I really remember, but my mom would explain that I had “special blood,” so if I were to ever fall or get cut, I should not let anyone touch it.
I could never be blood brothers or sisters with anyone. When I was a teenager, my doctors told me not to kiss anyone, as my braces could cause me to bleed.
A very small circle of my friends knew about my HIV status when I was in middle and high school, and a few teachers who I deemed to be “cool.” The stigma surrounding HIV made me reluctant to tell many people.
As I got older, I told more and more friends, growing more and more tired of curbing my conversations and hiding my medications. In 2020, I flat-out went public with my HIV status, posting a lengthy letter on my personal blog and social media. The pandemic made me realize that if I wanted to be protected, then I would have to be honest with everyone I have in my life.
HIV/AIDS affects everyone who has it differently, but there’s this underbelly of shame that is carried with each person. My current therapist has experience with the HIV/AIDS community, and with her help, I’ve been able to let go of some of that shame.
I believe living with any disease creates a kind of continuous trauma of explaining yourself, fighting for your medical rights, and feeling side-effects from treatments and medications.
Therapy has made me see how hard it is even to speak about my feelings about having HIV, as I am never asked how it makes me feel. I’m used to telling my story, but those are all the facts and bullet points, not the emotional tolls or daily consequences that are paid. Even writing this has stirred a lot of uncomfortable feelings.
But, I believe having HIV has given me a strength and fortitude that I wouldn’t have otherwise. The people and experiences and hope I have felt is unbelievable.
Being told for most of your life that it’s a miracle you are even here is very humbling. It makes you want to treasure the blessings and the failures in life, because at least you’re here to fail or succeed, because there are so many who aren’t here any longer.
Life & Death in the AIDS Ward
Story & Recording by Ed Wolf
I remember a patient on the AIDS unit whose mother arrived too late. She was traveling by bus, because she was afraid of planes. But he died before she could get to San Francisco.
We put a sign on his door, “See Nurse Before Entering!” When she arrived, a doctor took her into the room and sat with her and the body. We could hear her crying.
Afterwards, she walked down to the visitor’s lounge. Ricky, homeless and only 18, was on the couch watching television. He was the youngest patient with AIDS I’d ever met.
The mom sat down next to him and they began to talk. After a few hours, she left — but she returned the next day, and the day after that.
By the end of the week, funds had been raised for two airline tickets. Ricky had assured her that flying was safe, and she was taking him home.
Pedro Zamora, 1972-1994
Recording by Wilson Cruz
Story by The AIDS Memorial and Irwin M. Rappaport
Photo © MTV
Pedro Zamora’s bravery and commitment to AIDS advocacy engaged and educated TV audiences around the world. Pedro was a cast member on Real World: San Francisco from 1993 to 1994. I’m Wilson Cruz, and hardly a day goes by that I don’t remember Pedro’s courage and dedication.
On Real World: San Francisco, Pedro was one of the first openly gay people with AIDS that many people ever saw on TV. Simultaneously, on My So Called Life, I was the first openly gay actor playing an openly gay character in a series regular role on American TV. And to this day, Pedro still inspires me as an actor, as a man, and as an activist.
Pedro Zamora was the youngest of eight children living in Havana, Cuba when his parents decided to emigrate to Florida as part of the highly-publicized Mariel Boat Lift in 1980. Pedro was an honor student, captain of the cross-country team and President of the Science Club at his high school where he was voted Best All Around and Most Intellectual. But at 17 years old, Pedro learned he was HIV positive after donating blood at a blood drive.
His HIV-positive diagnosis propelled him to become a full-time AIDS educator, so that other young people could learn what he was never taught. This led to hundreds of speaking engagements; a front page article about him in the Wall Street Journal; appearances on major talk shows hosted by Oprah Winfrey, Geraldo Rivera and Phil Donahue; and testimony before the U.S. Congress on AIDS education.
Producers of the Real World wanted to cast an HIV-positive person. Being cast on the series gave Pedro his biggest platform for AIDS education and won him fans all over the world. Audiences watched how his HIV status affected his relationships with housemates and his health. They celebrated his commitment ceremony with partner Sean Sasser, which was the first such ceremony in the history of television.
But about midway through the taping of the series, Pedro’s health began to decline, but he told producers that he wanted them to tell his story until the end. When the stress from his conflict with a homophobic housemate, Puck Rainey, led Pedro to want to move out of the Real World house, his other housemates instead voted to evict Rainey. Time magazine ranked that episode #7 of the top 32 most epic episodes in reality TV history.
In late June 1994, the Real World: San Francisco began to air on MTV. At a cast reunion party only two months later in August, Pedro’s progressing illness was evident. He was diagnosed with toxoplasmosis, a disease that causes brain lesions, and also a rare and often fatal virus that causes inflammation of the brain. Doctors estimated that he had 3-4 months to live.
In September 1994, he was transferred to a hospital in Miami near his family. With the help of the U.S. government, the remainder of his family was allowed to move to the U.S., so that they could be with Pedro before he died. MTV paid for his medical costs, because Pedro was unable to get health insurance due to having a pre-existing condition.
Pedro Zamora died of AIDS at age 22, the morning after the final episode of the show was broadcast.
A memorial fund, youth clinic, a public policy fellowship, a youth scholarship fund and a street in Miami are named in Pedro’s honor. He was one of the 50 people first included on the National LGBTQ Wall of Honor as part of the Stonewall National Monument, the first national monument in the U.S. dedicated to LGBTQ history.
Reflecting on Pedro’s death, President Clinton reminded us, “We must remember what Pedro taught us: One person can change the world — and whether or not we are living with HIV or know someone who is, we all have a responsibility as global citizens to do whatever we can. Life is short enough as it is. No one should die from a disease that is both preventable and treatable.”
Roger Bessey
Story & Recording by Diana Keough
My father, Roger Bessey and my mother, Christine, lived in Milwaukee, Wisconsin. My dad was in the hospital on the brink of death when, on January 7, 1988, we discovered he’d been living a double life for 27 of the 37 years he’d been married to my mom and that he was infected with AIDS.
Three weeks later, we found out he’d infected my mother. He told me later, he had a strong suspicion he was infected with AIDS and was hoping he’d die without anyone finding out.
My world came crashing down. Not only did my five other siblings and I have to deal with my father’s double life, but we also had to get our minds around the fact that both of my parents were dying of AIDS during a time period where there was so much fear and misinformation about how it was spread and how you got it.
The rumors, the threats of blackmailing were so overwhelming, we had to move my dad out of town and change his name. We quickly sold the home they had lived in for 25 years and moved my mother to other side of town. My parents never spoke again.
Friends would come into my home and not eat or drink anything; many were afraid to touch me, afraid that they could get it from me. One friend even told me she couldn’t be my friend anymore because I “didn’t come from a nice family.”
My parents’ lives and deaths still make me so sad sometimes. My dad could never be who he truly was, afraid of what others would think.
Angie Xtravaganza, 1964-1993
Recording by Dominique Jackson
Story by The AIDS Memorial and Irwin M. Rappaport
Angie Xtravaganza was a Puerto Rican trans performer and the Mother of the House of Xtravaganza.
Her birth family was Catholic, had 13 children, and lived in the South Bronx. Beginning when she was 13 years old, Angie started taking care of other kids who had been rejected by their birth families. Those kids lived and gathered in Times Square and on the Christopher Street Piers where Angie met Hector “Xtravaganza” Valle.
She started doing drag and performing at Harlem drag balls in 1980 when she was 16. She and Hector Valle founded the House of Xtravaganza in 1982 when she was 18 years old. It was the first house in the New York ball scene that was primarily Latino and was formed in part because of discrimination against Latino performers in that era.
I am Dominique Jackson, and I played the role of Elektra Abundance in the award-winning television series “Pose” which chronicled the New York drag ball scene.
Timmy Dean Lee recalled, “I miss seeing Angie at the Garage. We took a liking to each other right away when we first met. My friend Big Lou would introduce us because Angie had admired some of my hand-painted clothing. It was because of that introduction that I was soon painting clothes for many of the Xtravaganzas, attending the Balls and, on occasion, honored to be asked to be a judge. The kind, loving but tough Mother Angie.”
Angie, who was known for her keen sense of fashion, was featured in Jennie Livingston’s 1990 documentary Paris is Burning about the drag balls and the houses that fiercely competed to win the trophies. The film won its own trophies: the Sundance Film Festival Grand Jury Prize, and awards at international film festivals in Berlin, Toronto, San Francisco and Seattle, along with Best Documentary Awards from film critics in New York, Los Angeles and from the National Film Critics Circle.
Angie was diagnosed with AIDS in 1991. Despite her illness, she took care of her kids.
Frank Xtravaganza told Pulitzer Prize-winning author Michael Cunningham: “The last time she went out, it was St. Valentine’s Day. I’d had a date, but he stood me up, and I was bummed out about it. Angie was really sick by then, but she said, ‘Miss Thing, we’re going out.’ She put on make-up and her wig. She wore jeans and a top that showed her belly button, which was about the only place by then that didn’t have KS lesions. She teased up her wig, sprayed it, and we went to the Sound Factory Bar.”
After she died alone in the hospital in 1993, her ashes were sent back to her family in the South Bronx who buried her with her birth name, Angel Segarra, on the plaque.
In April 1993, Angie’s death and the deaths of others featured in the Paris is Burning documentary were written about in a New York Times article titled “Paris Has Burned” featuring Mother Angie on the front page of the Sunday Style section.
In 1995, Michael Cunningham published an article “The Slap of Love” about Angie and about drag performer and house mother Dorian Corey.
As Hector Xtravaganza said to Cunningham: “She believed in me when I didn’t believe in me. We all felt that way. She believed in us. She was my gay mother, my friend. She put so much shit in my head, just the slap of love. And it woke me up.”
Lulu & Her Fairy Godfathers
Story & Recording by Lulu from San Francisco
When I was a little girl, we rented out a room in our large Haight-Ashbury flat to generate extra income. It was always rented to a young gay man, probably because my mum, a single parent, felt it was the safest and most sensible option.
Their room was right next to mine in the front of the house and included a sitting room that we called the “library,” because it had floor to ceiling bookcases, big puffy pillows on the floor and comfy nooks to settle in for reading or taking a nap. It was a common area in the house, but was mainly for our renter’s use, though I could often be found perched on the big overstuffed chair, peering out the window to observe the view of the always entertaining corner of Haight and Ashbury Streets.
If I wasn’t daydreaming, I had my nose buried in a book; such is the life of an only child in a household with no TV. Inevitably, our housemate would slide open the French doors that divided their room to the library and slowly, gently, tenderly, carefully, our friendship would unfold.
The men who lived with us all referred to themselves as my “fairy godfathers” – their term, not mine. As a child, I didn’t understand the tongue in cheek we’re-taking-our-power-back meaning. Once I did, I both grimaced and grinned.
We had about five young men live with us over the years. This was in the late ’70s – early ’80s, before gay people could easily adopt kids or were even really allowed to think, dream about becoming parents in some cases. I was the only child in their circle of friends and was often invited to tag along to their ever so glamorous soirées, Oscar parties, holiday fêtes, and any other over-the-top event that might just really be a Tuesday night but always seemed like so much more. These outings gave my mum nights off from mum-ing and me, adventures to be fondly remembered decades later.
I often found myself sitting crossed-leg in the middle of one of their friend’s exquisitely decorated antique-filled living rooms in the Castro district on a priceless oriental rug, beading necklaces or playing with antique paper dolls (theirs, not mine), Judy blasting in the background, watching a group of lively young men gossip and flirt and dance and share stories about their hopes, dreams, and fears.
I heard them talk about how they had escaped to San Francisco from places like Iowa, Kentucky, Texas, so that they could live and love freely. They had all been disowned by their families for being gay. They had to create their own families, and I was privileged to play the role of the little sister, niece, cousin they had to leave behind or, on an even deeper level, the child they never believed they would ever be able to have. It was from them that I learned my lifelong mantra: Friends are the family we choose for ourselves. And love is love.
Sorry, Lin, but they said it first.
Of course, I was much too young to really understand the implications of all of this, but what I did know was that I felt so grown up and cherished in their presence.
I knew there was something special about these men. To me they were worldly and fancy and sparkly and they knew a little something about everything. And most importantly, they taught me what they knew.
From them, I learned about music and fashion and art and literature and Broadway and why black and white movies of the ’40s were the best movies and that you must always bake with butter, never margarine and that cookie dough is calorie-free and the power of the LBD and that one must always dress up when going downtown and the difference between Barbra Streisand and Barbara Stanwick, Bette Davis and Bette Midler, Oscar the Grouch and THE Oscars, and the importance of wearing sunglasses, even in the fog, to prevent wrinkles, darling.
They were men of great style, class, elegance, intellect, wit, charm, creativity, beauty and fun. They were incredibly cultured and had exquisite taste. My memories of my time with them run deep:
– Going to the “Nutcracker” every Christmas Eve
– Having high tea at Liberty House
– Lip syncing and dancing to the Andrew Sisters “Boogie Woogie Bugle Boy” (I know all the words still, to this day)
– Taking in the Christmas decorations downtown at Macy’s and I.Magnin’s, and ending the day with a cable car ride to Ghirardelli Square for hot chocolate with extra cherries and whipped cream
– Lengthy sermons on the essential need for dust ruffles and monogrammed stationery and silk dressing gowns
To a young child, these experiences leave a mark, a permanent flourish of rainbow-colored glitter sprinkled on her soul.
To my child’s eye, mind and heart, these men were magical. They were my playmates, the most delightful big brothers to a shy, often sad and lonely little girl. They were fun and silly and played dress up and always let me be Cher to their Sonny – a major sacrifice on their part, to be sure!
They told me I was a glittering gem and that I was “fabulous” and they meant it in a REAL way, not a “hey girl hey” way, though we had those moments, too.
They treated me with respect. They didn’t patronize or pander to me. They expected me to keep up my end of the conversation, regardless of the topic or my lack of knowledge about it. Local politics or Best Dressed at the Oscars, my opinion mattered to them.
They didn’t baby me. They treated me like an equal. But that didn’t mean that they didn’t spoil and coddle me. They made me feel special and valued and respected. Perhaps because society didn’t offer them the same respect as gay men, they felt compelled to make sure I was always treated as a whole person.
For a young girl of color, this went far in developing my sense of self and worth and pride in being who I was.
They also showered me with gifts, some that I still have to this day:
– A beautiful hand-woven throw made on an old-fashioned loom
– A hand-beaded necklace with an antique tiny bell at its center (too tiny now for my adult neck but still cherished)
– A beautiful white cake stand from Tiffany’s, an odd gift for a 10-year-old girl, you might think, but as the gift giver said when he handed me the HUGE blue box, “Sweetie, if I’ve taught you nothing else, please remember this: The light blue box is always the BEST box!”
I still have those treasures, but I no longer have my fairy godfathers.
They all eventually succumbed to AIDS. They were all in long-term relationships. Their partners died, too. By the early ’90s, they were all gone.
These men were the first and most prominent adult male figures in my young life; in truth, the only father figures I had growing up. I know for a fact that it is because of my time with them that I am the person, the woman, the friend, the activist, I am today.
They didn’t live to see the many strides and advances that the LGBTQ community has made. If they were still alive today, they would be at the front of the line continuing to fight the good fight for the strides still to be made.
But they aren’t, so I do it for them. It is the least I can do to honor their legacy and repay them for all they have given me.
My description of these men might seem almost disrespectful in its seemingly stereotypical depiction of gay men, but these were the men I knew, as I knew them, when I knew them. This was who they were, at a time when the gay community in San Francisco was thriving and carefree, when the pulse of the disco beat of the day seemed to ring in sync with the beat of the cultural awakening that was taking the world by gloriously gay rainbow storm on the streets of San Francisco.
I am so lucky that I spent my formative years as their fairy goddaughter, wrapped up in the glow of this historical time. But my golden carriage turned into a pumpkin well before midnight of my young adulthood dawned and my fairy god-fathers vanished with it.
I am a better human being because I knew them. THIS, I know for sure.
My fairy godfathers may be gone, but their rainbow-colored fairy dust flows in my veins forever.
They had their Pride. And they gave me mine, too.
Love,
Lulu