Stories of Community
Ed Junior, 1982-2015
Story & Recording by Dave Coleman
Ed Junior had the voice of an angel, but only those of us involved in the karaoke scene of southern California got to hear it. Affectionately known by his friends as Rihanna, he could match the best singers of our time like @WhitneyHouston, @CelineDion, @Siamusic and Freddie Mercury.
But Ed had a secret that he kept from his friends: He was in the United States illegally. This explained why he never had a good job that lasted for long and why he never had a bank account. It also explained why he never sought medical attention after being diagnosed with AIDS. He didn’t have medical insurance, and thought he’d be deported back to Mexico and outed to his family.
Ed was too afraid to enter a hospital until the disease deteriorated his body so badly that he was collapsing and couldn’t hide it any longer. Friends admitted him into the hospital. He wasn’t deported. He never left the hospital. A few weeks later, he was dead.
As Ed laid on the hospital bed dying from AIDS, I would play his favorite songs for him, like Rihanna, “Shine bright like a diamond / Find light in the beautiful sea / I choose to be happy.”
Ed’s family came to the United States to claim his body. A celebration of Ed was held at his favorite gay bar to raise money for funeral expenses, where we all tried to sing in his memory. His family came and met all of Ed’s friends. They shed tears for the loss of their child, but also happy tears for the amount of love this tight knit community had for this angelic human being.
Ed’s voice and kindness touched all of our lives. He will be remembered always. He shone bright like a diamond in our sky.
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
DJing at Eagle’s Nest
Read by Susan Morabito
Story by Jimmy Perigny
Jimmy’s story first appeared on The AIDS Memorial on Instagram
Hi, my name is Susan Morabito, DJ and producer. And I’m pleased to share this story from Jimmy Perigny about his days of DJing at the Eagle’s Nest — a former bar known for low lighting, leather, and Levi’s — on the Westside Highway at 11th Avenue and 21st Street.
Jimmy wrote:
Here is a story I would like to share on World AIDS Day. When I was hired as the Friday resident DJ at Eagle Nest in New York City in 1994, I was forbidden by the owner, Jack Modica, to play any disco or any music from the club the Saint. One night, I sneaked on The Main Event Barbra Streisand extended version at around midnight.
Jack ran into the booth and ripped the record off the turntable and proclaimed, “You are not allowed to play any disco, because it reminds people of the sad deaths from AIDS.”
I responded, “If I didn’t play any song that reminded anyone of AIDS, there would be no music to be played.”
He thought about it and later agreed. So I struck a deal to play only one song after the bar stopped serving … the last song. Patrons mostly stayed to hear my last song, which was a tribute to the Saint and our friends we danced with that passed on.
* * * *
Jimmy’s story reminds me of a similar one I experienced from the mid-90s, when Michael Fierman was playing the Pavilion one night at Fire Island Pines. He was playing a song called “Move Your Body (Elevation), which was big back then. The dance floor was packed. He then slammed into “Don’t Leave Me This Way” by Thelma Huston, a song from 1977. There was a notable shift on the dance floor.
Dozens of younger guys fled, and just as many people ran to the dance floor, but they were over 35-ish. As I was moving towards the dance floor, I walked past these two guys and one said to his friend, ” What is he playing this for? They’re all dead.”
That comment captured the vibe on the island for several summers. During those days, I never felt the dance floor so divided.
Sylvester, 1947-1988
Recording by Billy Porter
Story by Dave Marez and Irwin M. Rappaport
Sylvester, sometimes known as the Queen of Disco, was famous for an androgynous look and a fierce falsetto voice. Born in the Watts section of Los Angeles on September 6, 1947, he grew up singing in a Pentecostal church but left the church at age 13 and soon after left home after being shunned by the congregation and his mother for being gay.
Refusing to bow to pressure to conform, for his high school graduation photo Sylvester wore a blue chiffon prom dress and his hair in a beehive. He moved to San Francisco in 1970, where he performed for a couple of years with the infamous group of drag performers “The Cockettes.”
He released in a solo album in 1977, performed regularly in gay bars in San Francisco’s Castro neighborhood, and was cast in a cameo singing role in the Bette Midler film, The Rose. It wasn’t until his third album in 1978 that Sylvester found success including his best-known hit “You Make Me Feel (Mighty Real)”. That album, with background vocals from the Two Tons of Fun, Martha Wash and Izora Rhodes, went gold, topped the dance charts in the U.S., and led to major talk show performances and promo tours in the US.
On March 11, 1979, while Sylvester recorded his Living Proof live album in a sold-out show at San Francisco’s War Memorial Opera House, then-Mayor Dianne Feinstein awarded him the key to the City and proclaimed it “Sylvester Day.”
Never forgetting his community roots, Sylvester performed at gay pride festivals that year in San Francisco and London. Another dance hit, “Do You Wanna Funk,” released in 1982, was co-written with Sylvester’s frequent collaborator, writer-producer Patrick Cowley, who died of AIDS that year when the disease was still known as GRID.
Sylvester, along with Joan Rivers and Charles Nelson Reilly, did the first-ever AIDS fundraiser at Los Angeles’ Studio One nightclub in 1982. He called his 1983 song “Trouble in Paradise,” an AIDS message to San Francisco, and performed benefit concerts to raise awareness and money about the epidemic.
Sylvester’s boyfriend at the time died of AIDS in 1987, and Sylvester’s own health began to decline later that year. In the spring of 1988, Sylvester was hospitalized with pneumonia but managed to attend the Gay Freedom Parade in June in a wheelchair.
The Castro Street Fair in October of that year was dubbed “A Tribute to Sylvester.” Although he was too ill to attend, he heard crowds schanting his name from his bedroom and continued to give press interviews, openly stating that he was dying of AIDS and trying to highlight the impact of the disease on African-Americans.
Sylvester James, Jr., died on December 16, 1988 at age 41. At his direction, his body was dressed in a red kimono in an open casket. In his will, he bequeathed all future royalties to two AIDS charities.
In 2005, Sylvester was inducted into the Dance Music Hall of Fame and in 2019 the Library of Congress chose “You Make Me Feel (Mighty Real)” to be preserved in the National Recording Registry.
POZ magazine: Help, Hope, and HIV
Story and Recording by Sean Strub
I’m Sean Strub, and in 1994 I founded POZ magazine with the tagline “Help, Hope, and HIV.”
Hope was important. At the time, not many people believed there would be many survivors, if any, of the epidemic. And while the media context at the time was AIDS was inevitably fatal, dread disease, terminal illness, no treatment, no cure, no survivors – I was living in a world full of people with HIV who were living vibrant lives, raising their children, making art, going to school, creating businesses, engaging in activism, going to demonstrations, caring for others, despite this tremendous health challenge that was likely and only did kill most of us.
It was important to show the example of people who were leading vibrant and full lives, despite that challenge – especially for people who were culturally and geographically isolated and didn’t have the option of going to an ACT UP meeting in the Village and being surrounded by that kind of support.
At the time when we started the magazine, we had a number of, sort of, rules. When we had science coverage, we made sure that a person with HIV was quoted in the first few paragraphs of the story. We didn’t want to hear just from scientists or just from the clinicians; we always wanted to hear from people with HIV themselves.
We sought to make stars. We put people on the cover no one had ever heard of. They weren’t famous; that’s not why we put them on the cover. They were doing really important and inspiring work, and we wanted to bring attention to what it was that they were doing.
The idea of the magazine was to strengthen our community, foster empowerment, resistance and pride, and give that example of survival and hope to people anywhere who read the magazine.
Our first issue featured Ty Ross on the cover. Ty was a very attractive young man who was the grandson of famously conservative presidential candidate Barry Goldwater. He was interviewed by Kevin Sessums, who at the time was the top celebrity interviewer for Vanity Fair magazine. Hollywood photographer Greg Gorman took really great pictures of Ty, added to the appeal.
Frank Rich was a columnist for the New York Times, and he called POZ “easily as plush as Vanity Fair, and against all odds, the only new magazine of the year that leaves me looking forward to the next issue.”
We were criticized, even for the fact that we had high production values and glossy paper and beautiful photography. As if somehow people with AIDS had to have a publication on newsprint with typos, or something. I never understood that criticism. At the time, the publisher of The Advocate said to a trade publication he didn’t understand why anyone would ever advertise in a magazine with such a grim topic.
In those first years, every month, we ran my lab work — the actual scan of the report from NetPath or Quest or whatever the lab was — and explained each of the different things on it. And then we had different physicians and experts comment on my health.
One of my very favorite ones was when my CD-4 count was down, I think, to 1 and my viral load was in the millions. And one doctor looked at my health records and said: Sean is in very serious shape, he is at great risk at becoming ill, and what he needs to do immediately is A, B and C.
In the next paragraph was a different doctor, also an expert, and said: Sean’s situation is dire, but what he shouldn’t do is A, B or C. He should be doing X, Y and Z.
And it wasn’t about trying to call out one doctor or the other. That was the reality at the time is that people were getting conflicting advice even from people who were expert and well-meaning, because so little was known about how best to treat the disease and the opportunistic infections that arose from it.
We were also very focused on the Clinton administration and their failure to support syringe exchange programs when the science was utterly clear that they were incredibly effective at reducing HIV transmission. And that became a campaign that went on for several years. And we were a thorn in their side.
Bob Hattoy, who worked in the White House, used to surreptitiously report to me what people were saying at meetings when the topic came up or things about the epidemic came up.
A year or so after we started, my health had really plummeted. I had spent the money I had saved in my life; I’d sold my insurance policies to fund the magazine. My CD-4 count was almost non-existent, I had pulmonary Kaposi’s sarcoma in my lungs, and I had lesions all over my body. But we carried on, and we found a path through to a point where POZ became the most trusted information source for people with HIV.
In survey after survey, done by us or by government agencies or even the pharmaceutical industry, found that people with HIV trusted POZ more than they trusted even their own personal physicians or any non-profit organization. The only category of information source that they trusted more were their personal friends who were also living with HIV.
In 2004, I sold the magazine and it found a new life online with a much broader audience around the world.
I’ve done a lot of things in the epidemic. I was involved with ACT-UP, co-chaired the fundraising committee, raised a lot of money. I was at demonstrations at St. Patrick’s Cathedral, climbing on the top of Jesse Helms’ house, putting a giant condom over it, working with the People With AIDS Coalition in the early ‘80s even before ACT UP was around, running for Congress as the first openly HIV-positive person to do so in 1990. I produced David Drake’s hit play The Night Larry Kramer Kissed Me, and in 2014, I published a memoir called Body Counts.
But POZ holds a very special place in my heart, because of what it came to mean to so many millions of people living with HIV and affected by HIV in the U.S. and around the world. And I’m proud that it endures and our community endures.
Rolling Through the Pain and Loss
Story & Recording by Marna Deitch
I’m Marna Deitch. In 1980, I lost my parents and grandparents from different illnesses within two months. I was a stage actor in New York City, and I relied on my friends to replace the roots that were just ripped out from me.
We were all young actor/dancer/singers, hanging out at the piano bar with each other and dreaming of accepting our Tony Awards. One of my co-workers at the restaurant I worked at got very ill. I think it was 1981. At first, they didn’t know what it was that was making him waste away. And then they attached a name to it: GRID. Gay-Related Immune Deficiency.
They couldn’t help him. He died. It was a mystery.
The next year, they changed the diagnosis name to AIDS. More and more of my close friends were developing symptoms. Some died quickly, within a few months of diagnosis, and some lingered in a long painful fight. It wiped out the theater community in New York in the early ‘80s, and I lost most of my closest friends.
My high school in Long Island had a big theater department, where a lot of students felt comfortable with coming out, but we stayed friends after graduation. Paul and Steve were together in a monogamous relationship. One night they decided explore opening up their relationship, and they did, only that one night. I can’t remember who died first, but they both died within two years of that one night … and because of that one night.
Of all these losses, one of the most painful was that of Gene, one of my closest friends who disappeared for six weeks and was subsequently found floating in the Hudson River down by the World Trade Towers. George had been Gene’s lover of six years and our friendship went back to high school, where he was my date to prom.
Shortly after Gene’s death, George said to me, “You’re moving to California, aren’t you?” and he asked if he could come with me. I immediately said yes.
“How’d you like to go by motorcycle?” he asked.
I thought he was crazy. Neither one of us had even been a passenger on a bike! But I thought, what the hell, let’s do it. We were empty from all the losses. We had to do something dangerous to bring life back into us.
We took a few lessons and somehow passed our motorcycle road tests. The next day, we bought bikes, packed up and left New York City six weeks later. We left, even though George’s best friend from elementary school, Andy, was battling AIDS. And once we were on the road, I noticed that George wasn’t doing well. He was always tired.
We had planned to camp out on the road, but now he wanted to stay in motels. When we reached Texas, George decided he would head back to New York. I decided to go on to California by myself. And I got to California. By that summer, I turned around to ride back to New York. I wanted to see Andy before he passed, knowing that he was getting bad. But I didn’t make it, he died when I was in Colorado.
And then, soon after, I lost my very closest friend, Kenny. The AIDS went to his brain, causing him to become paranoid. To this day, Kenny’s death was the hardest for me, even harder than the deaths of my parents. It was Kenny who got me through my parents’ funerals and the grief that followed. And now he was gone.
At the March on Washington, D.C. in 1987, I was there for the unfurling of the Names Project and found the quilts for friends who I had lost touch with and were now dead. I left California for a six-week motorcycle road trip and returned home to discover that I lost more friends from AIDS, men who weren’t even sick when I had left.
What I didn’t know on first that cross-country motorcycle trip from New York to California was that George was HIV positive. He had only two or three more years to live. I still have that motorcycle and I had George’s initials painted onto the tank.
But I feel like that motorcycle was their last gift to me. My parents, George, Gene, Kenny, Steve, Paul — it’s like they all said that they weren’t going to be here with me to share my life, so they were going to give me this incredible life to live.
Because of their gift, I have now traveled cross country five times by motorcycle, twice up to the Arctic circle and back, and flew to Hawaii where I rented a bike and road around the Big Island, in order to finally say I have rode my bike through all 50 states.
I have gotten so much recognition because of the motorcycle, which only came into my life because of this pain and loss. I miss them all greatly. But I also know this life I live is because of them and a tribute to them.
Pride Tirade 2021
Story and Recording by John Kelly
Happy as I limp my wrist in pride for us — the outcast, the maligned, the persecuted, the entrapped, the murdered, the sweated, the followed, the avoided, the violated, the blackmailed, the serial-tattooed, the sneered, the ostracized, the erased, the hated, the invisible, the raped, the tolerated, the patronized, the parodied, the joke, the denigrated, the evicted, the diminished, the emasculated, the de-promed, the expelled, the therapized, the shock-treated, the lobotomized, the numbed and the drugged, the lost, the dead, the erased, the removed from tangible history, the persistent dwellers in blessed proximity, the survivors, the warriors, the steadfast, the persistent, the inclusive, the non-ageist, the color blind, the expansive, the essential, the imaginative, the true, the warriors, the activists both stewing and shout spewing, the long term survivors demanding to be honored, the generational glue that is gold, the striving and striding toward our place in the sun that demands to be respected, and the imperative that we acknowledge that the AIDS pandemic ruptured our inter-generational dialogue, and our personal, systemic, collective and more generally cadenced growth.
This/MY generation of artists — and OUR audiences — disappeared.
YOU are standing on our generational, grave–like, culturally curtailed, and tribally intrinsic sinkhole. You may be afloat and faring ok on the gravitas of a vast family of ghosts and heart shattering loss, of dead young unresolved spirits. Advance, as we had done, in your own way and manner, and as you continue to grow and transform the world, please aim to bless the ground on which you re-trace our analog step.
WE walk the very same path.
- Kiyoshi Kuromiya
Kiyoshi Kuromiya, 1943-2000
Recording by George Takei
Story by The AIDS Memorial and Irwin M. Rappaport
Photo provided by Philadelphia FIGHT
Kiyoshi Kuromiya’s birth in 1943 in a Japanese-American internment camp, ironically called Heart Mountain, set the tone for a life of advocating for civil rights and against war.
He dedicated his life to educating and empowering people. As a personal assistant to the Rev. Dr. Martin Luther King, Jr., Kuromiya, along with Dr. King, Rev. Fred Shuttlesworth, and James Forman, suffered attacks by the sheriff’s deputies and their volunteer crew on March 13, 1965, while leading a group of Black high-school students on a voter registration march to the state capitol in Montgomery, Alabama. His head wounds required 20 stitches.
Soon thereafter, Kuromiya marched with Dr. King and was beaten during the Selma march of 1965, and later helped care for the King children in the week of Dr. King’s funeral. That same year, he marched in the 1965 gay rights protest in Philadelphia.
In 1967, Kuromiya joined the Yippies, Alan Ginsberg, and Abbie Hoffman in a Vietnam war protest and headline-grabbing performance at the Pentagon where they used an ancient Aramaic chant in an attempt to levitate and exorcise demons from the Pentagon. He was a founder of Gay Liberation Front-Philadelphia and brought a campy spin to protests and demonstrations.
“We’d go up to a line of cops with tear gas grenades and horses and clubs. And link arms and do a can-can. Really threw them off guard.”
Kuromiya was an openly-gay delegate to the 1970 Black Panther Constitutional Convention where he conducted a workshop on gay rights and where gay liberation was endorsed. He edited ACT UP’s “Standard of Care” publication, the first of its kind to educate people living with HIV on how to care for themselves. He founded the Critical Care Project which provided free internet access and a24-hour hotline for people with HIV in the Philadelphia region and whose newsletter brought treatment information to thousands across the world.
Kuromiya advocated for treatment designed with community input, for the entire HIV/AIDS community, including people of color, IV drug users and women. He sent newsletters to hundreds of incarcerated people to make sure they had up-to-date information on treatment of HIV and AIDS. He participated in the successful lawsuit against the Communications Decency Act, ensuring that freedom of speech on the internet, including medical information related to AIDS, was preserved. He was the lead plaintiff in Kuromiya v. The United States, a class action lawsuit seeking to legalize medical marijuana, including for use by AIDS patients.
A life begun in barbed wire incarceration and defined by the quest for freedom. Kiyoshi Kuromiya died of complications from AIDS in the year 2000.
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.
The AIDS Atlanta Outreach Team
Story & Recording by Misha Stafford
This story originally appeared in The AIDS Memorial on Instagram.
After graduating from college, I moved to Atlanta, Georgia for my first real job and I began volunteering for AIDS Atlanta.
This is a picture of myself, with seven of the best friends I ever had, taken in September of 1990. We were trained in an outreach project that gave talks about HIV/AIDS and safe sex.
We spoke at churches — if they would have us. We spoke to schools, civic organizations, local groups — any group that would let us in the door. We came up with a whole routine that had both humor and a very serious aspect to it.
I share this very scared picture of mine, my friends, my “Band of Brothers.” We were having a cook-out that night and waiting on all of our other friends to arrive when someone snapped this pic. It’s old, it’s not in great shape — but it means the world to me.
We were listening to Roxy Music that night, and the songs “Avalon” and “More Than This” can still take me back to every detail of that evening.
I have “ghosted” my friends’ images so that those who are too young to remember the early days of AIDS epidemic can maybe understand, just a bit, what it’s like to be the last one left.
In this picture are two high school teachers, one attorney, one in law school, one hairdresser, one college student and one carpenter. They each have their own, unique story. By 1997, all had succumbed to AIDS, including my best friend, Phil, and I was the last one left. The only one alive.
I left Georgia after this, taking a position in south Florida. I found that you can change your surroundings, but you still carry the hurt, the loss, and the grief wherever you go.
My First Love Story
Story & Recording by Brice LaBarthe
This story first appeared on The AIDS Memorial on Instagram
It all happened in Toulouse, France between August 1986 and September 1989. Eric Jussiaux (1964-1989) was 22 years old … six years older than me. Eric would become my first love story.
I noticed Eric in a cafe-bar one day after class. We looked at each other in such a way I knew something was going on. And when I was on my way back home, I will always remember I could feel he was behind me. I turned back, and I saw him. We were both too shy so it was only the day after, at the same bar, that we started talking.
Eric was visiting a friend; he was from Paris. We fell in love. He decided to stay in Toulouse.
I knew from the start Eric was HIV positive. Nothing seemed to matter more than to be near him. I never found anyone else with the same energy, sense of humour and creativity. Eric was making everything magical, whatever he was doing: a drawing, a poem or even making coffee, with always a sense of craziness.
Eric was an artist. He could draw, he could paint, he could sing, but what he decided to do was to open a café just opposite my college. That was his masterpiece!
I left college and I went to work with him. The place became the refuge of all the outcasts and weirdos. It was our nest where others were welcome. He was making everyone laugh, me first. He was a true artist, in the sense your life was not the same after meeting him.
AIDS took him in one week. I feel so lucky Eric didn’t have to go through all the torture and agony. One week is long enough.
The Berlin Wall falls, and I am 20 years old. These two events left me in a sort of total indifference.
Eric left. It was like being paralyzed and still today, I can’t get over it. It was so painful, I didn’t attend his funeral. I couldn’t even tell friends or relatives what happened.
And then, I took the courage to ask Eric’s dad for some pictures, as his face started to fade away in my mind. I couldn’t bear it. I only kept a book note of his poems and a love letter.
I still feel he’s behind me, but I never wanted to turn back again.
Mark Morgan, 1961-1993
Story & Recording by Rev. Dr. Ginny Brown Daniel
My friend Mark Morgan (1961-1993) died of “the flu.” I miss him every day.
He gave me my first job when I was 15 years old in 1986. Mark owned Toomer’s Drug Store in Auburn, Alabama. This was his dream as a pharmacist and a huge Auburn football fan, because the drug store was where we all rolled the oak trees with toilet paper whenever we won a game.
I knew Mark was gay, but we never talked about it because it was the mid-80s in Alabama, and Mark was Southern Baptist. I grieve that I could never talk to him about being gay, but I saw how much he struggled with being a Christian and gay. I assumed that when he was ready, he would share.
Each year, Mark took a vacation to New England. He would tell us about this area called Provincetown and share how much he loved it there. Even then, I knew in the marrow of my being that he went there so that for one week a year, he could truly be as God created him without judgment or shame.
Mark was an active leader in our church and when I was asked to preach the sermon on Youth Sunday, Mark helped me prepare my delivery. I vividly remember practicing my sermon in the sanctuary as he walked down the aisle giving me pointers.
I stopped working at Toomer’s in 1991 but often saw Mark until I heard at Christmas 1992 that he was sick. I really wanted to visit him to tell him my exciting news that I was going to seminary to be a minister. But his parents told me he was in the hospital and was too sick for anyone to visit him. When I asked what he had, they quickly told me and everyone else in town that he had a bad case of the flu.
Mark died on January 5, 1993. I have never said this out loud, but I will say it here in this holy ground of @theaidsmemorial: My friend, Mark Morgan, died from complications of AIDS.
Mark not only shaped my adolescence, he shaped my ministry because I vowed to welcome all in the Church and celebrate that all — especially those who are gay, lesbian, bisexual, transgender — are created in God’s image because my friend Mark was created in God’s image!
Life AIDS Lobby
Story and Recording by John Duran
Photo from John Duran’s personal collection
(shown from left, circa 1987: John Duran, co-chair of the Life AIDS Lobby; Dianne Feinstein, mayor of San Francisco; and Lisa Kaye from the Eleanor Roosevelt Democratic Club)
My name is John Duran, and I’m the former mayor and council member of the City of West Hollywood for 20 years, former legal counsel for ACT UP chapters here in Southern California, Clean Needles Now the needle exchange, and Medicinal Marijuana. But prior to all that work, I was statewide co-chair for the Life AIDS Lobby.
The Life AIDS Lobby was created when we defeated Lyndon LaRouche’s Proposition 64 back in 1986. And we were quite happy to beat that back 2-to-1; it would have quarantined HIV-positive people in camps, had it passed.
And once we soundly defeated Lyndon LaRouche, we thought our work was done. But within six months, the California legislature had introduced almost 200 separate pieces of legislation on HIV and AIDS, from the most progressive ideas like AIDS education in the classrooms and needle exchange, to the most oppressive and extreme draconian measures like mandatory quarantine of HIV positive people in camps — again.
So we didn’t have, you know, the luxury of dissent at that point. We were under attack.
So we ended up organizing ourselves from San Diego all the way up to the north coast of California, and put 102 organizations together at a common table. Everybody was there. All the LGBT PACs, all the Democratic clubs, all the Stonewalls and Harvey Milks and Alice B. Toklas, all the Log Cabin Republican clubs, all the chapters of ACT UP, the sober recovery community organizations, all the Pride festivals, all the LGBT publications, the California nurses, teachers, health care officers — all at a common table.
And we would come together for quarterly meetings and debate policy, but we knew that with all the confusion and fear around HIV and AIDS, we really didn’t have the luxury of being able to disagree. We had to find a common table to hash out policy and stand united. And that’s what we ended up doing.
So we would meet with the California legislative leadership, Assembly Speaker Willie Brown from San Francisco and Senate Pro Tem David Roberti from West Hollywood, and we’d say the following 102 organizations all agree on these policies.
We would adjourn these meetings in memory of those that we had lost since the last time we met. And sometimes the adjournments would go for 30 minutes or more, as people openly wept about comrades who had fallen and people that had shared that common table with us.
And it was such a somber and sullen moment at the end of every quarterly board meeting, because we all realized, no matter what our political differences or our great diversity or gender or race or anything else — it didn’t really matter, we were all in the fight for our lives, and we were there to do what was best for the common good.
I always wondered why I was, you know, such a young man, living in Laguna Beach at the time and no more than 27-28 years old, and I’m the statewide co-chair. At the time, I was HIV-negative, and it was confided in me that they selected me, because a lot of the men who were positive or had AIDS who were elder statesmen and known and tested leadership, were sick and dying.
So it really became the story of lesbian women and our straight women allies taking the reins, along with some of the younger gay men who were recently infected or still HIV-negative, that would end up coming into leadership, because those that came before us were very, very sick.
It was quite an extraordinary period. Our first executive director was Rand Martin, who’s still up in Sacramento, and our second was the late Laurie McBride, who was just an angel on earth. Both such incredibly dynamic leaders that really made all the difference in crafting California’s compassionate response to HIV and AIDS — which, by the way, became a model for all the other states around the nation.
I think what gives me such a warm feeling about the Life AIDS Lobby, is remembering that there was no time for differences, no time to see something different about the person sitting next to me. We had to link arms and hands and work together no matter what, because our lives were on the line.
Spared, Blessed and Fully Awake
Story by Alexandra Billings
When it happened it was not a surprise. It was not out of left field and it was not unexpected. When it happened it was happening to everyone. Everyone I knew. Everyone around me. A black curtain had been thrown over the heads of us all and smothered us all in a cloud of decaying flesh and bloodied foot prints.
And the stench of the AIDS virus infiltrated the inside of my being and it is still potent. It is still thriving. Because I still have AIDS.
And I have outlived most everyone I knew, and we were in our 20s and we were in our 30s and we were still young and still having sex and still doing drugs and still running and jumping and skipping and singing and being queer. And yet one by one, we were being ticked off like ducks at a carnival. In the heart. In the brain. In the limbs.
And for some unknown reason . . . some of us were spared. And it is daily. And it is not gone. And it is getting worse. And it is still potent and it is still fresh. And it still lives in me and one day it will kill me. I know that.
But I am here and I am present and I am fully awake. And I love my life and I am married to the greatest human on the planet and I have spirits around me that bathe me in light.
And so I am truly blessed. Not that I have this disease, but that I learn from it. I remember very well when it happened. Because it seems like it happened yesterday.