Stories of Courage

'She was in such high demand that those hiring her would look the other way or enable her behavior rather than helping her or forcing her to deal with her drug addiction.'

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Gia Carangi, January 29, 1960 – November 18, 1986
Recording by Cindy Crawford
Story by Irwin M. Rappaport and Cindy Crawford
Photo by Aldo Fallai for the 1980 Giorgio Arman campaign

Hi, I’m Cindy Crawford. Before the word “supermodel” was coined, there was Gia Carangi.

From her first major modeling job with Versace, she was catapulted to the covers of Cosmopolitan and Vogue magazines, and became a favorite model of many of the world’s best-known fashion photographers, including Helmut Newton, Francesco Scavullo and Arthur Elgort.  Arthur first saw photos of Gia in 1978, when she worked behind the counter at her father’s restaurant, Little Hoagie, in Philadelphia.

Gia brought a new dark, edgy, moody look — and an “I don’t give a damn” attitude to American fashion modeling that had been dominated by smiling, blonde, blue-eyed beauties.  She was a rebel who unabashedly posed nude when most American models shied away from nudity. She was also a troubled young woman who had been sexually abused at five years old and whose mother abandoned her, her father and siblings for another man.

She was a lesbian who wore black motorcycle jackets, no makeup, and vintage men’s clothing in an era when being homosexual was an act of defiance; a heroin addict who used drugs to deal with her loneliness as a famous young model in New York City with few friends.

The drugs made it harder and harder for her to work. She fell asleep or walked out on jobs. But she was in such high demand that those hiring her would look the other way or enable her behavior rather than helping her or forcing her to deal with her drug addiction.

As former girlfriend Elyssa Stewart told the UK newspaper The Independent: “The problem was that people were more interested in hiding the marks than helping her.”

In 1984, she entered rehab for six months at the insistence of her family, but was soon back on heroin, and by 1985, she was in the hospital with pneumonia. She was sleeping on the streets, she was bruised, had been raped, and was reportedly doing sex work.

She died in November 1986, the first famous woman to die of AIDS and a warning that AIDS was not just a disease that took the lives of gay men.  Her death brought attention to the risk of needle-sharing and the benefits of needle-exchange programs and AIDS education rather than demonizing drug users.

Even as troubled as she was, her exit from the fashion industry left a gaping hole and people longed for her dark-haired, brown-eyed beauty.  So much so, that when I first came to New York as a young model, my agent sent me out to some of those same photographers, saying they had “baby Gia.”  I will forever be grateful to her for opening so many doors for me.

Francesco Scavullo, the photographer who adored Gia even as he hid the sores and track marks on Gia’s arm in a photo shoot late in her life, explained her allure: “Gia is my darling – old, young, decadent, innocent, volatile, vulnerable, and more tough-spirited than she looks. She is all nuance and suggestion, like a series of images by Bertolucci.”

“I never think of her as a model, though she’s one of the best,” he said.  “She doesn’t give you the Hot Look, the Cool Look, the Cute Look.  She strikes sparks, not poses. She’s like photographing a stream of consciousness.”

Rest in peace, Gia.

'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.'
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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.

'Madame was gaudy, glamorous, and bitchy … a queer icon. Flowers offered prime-time television audiences the attitudes of 1970s-era gay men taking their first steps towards Gay Liberation.'
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Wayland Flowers (1939-1988)
Recorded by Mario Cantone
Story by Karen Eyres

Wayland Flowers, who became famous on TV for creating and voicing the sassy puppet Madame, was one of the first openly gay entertainers to find acceptance in mainstream America. When breaking into show business as an actor proved unsuccessful, Flowers began performing in bars and clubs as a puppeteer and comedian. It was during this time he created the now legendary and influential character “Madame.”

I’m Mario Cantone from Sex and the City and Just Like That, and I know a little something about sassy comedy.

After refining his cabaret act throughout the 1960s, Flowers – and Madame – debuted on The Andy Williams Show, a long-running TV variety hour. From there, Flowers became a regular presence on network TV — although it was not unusual for Madame to get more closeups. Madame was gaudy, glamorous, and bitchy… a queer icon. With an act that included edgy jokes and social commentary, Flowers began to garner mainstream success with appearances on hit TV shows such as Laugh In, The Merv Griffin Show, and The Johnny Carson Show. When Paul Lynde left Hollywood Squares in 1979, Flowers and Madame took over the center square.

Flowers offered prime-time television audiences the attitudes of 1970s-era gay men taking their first steps towards Gay Liberation, a point of view that could have been regarded as controversial and provocative to mainstream audiences. Flowers managed to do it without worrying about the network censors, because the dialogue was coming from a dummy.

By the end of his career, Flowers had won two Emmy awards, and had played such venues as the Radio City Music Hall, the Universal Amphitheater in Los Angeles, the Sahara Hotel in Las Vegas, the Guthrie Theater in Minneapolis, and the Warner Theater in Washington, D.C. In 1983, he authored the book Madame: My Misbegotten Memoirs.

Sometime in the early 1980s, Flowers was diagnosed with HIV. His performing career came to an end on September 2, 1988, when he collapsed during a show at Harrah’s resort in Lake Tahoe. Several days later, Flowers was flown by air ambulance to make one last visit to his hometown of Dawson, Georgia. Then he returned to Los Angeles, where he checked into the Hughes House, an AIDS palliative care facility.

Flowers died on October 11, 1988 at the age of 48. His publicist originally reported the cause of Flowers’ death as cancer. In keeping with his request, Flowers was cremated and his ashes were interred with his dummy, Madame, in Cedar Hill Cemetery in Georgia.

'It was insulting to learn the LA Police Commission was in charge of certifying massage therapists… [It] was messing with the wrong HIV+ massage therapist.'
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I had to Fight for My Right to Work
Story and Recording by Andrea de Lange

I’m Andrea de Lange and this is my story about what happened to me starting in 1987, when I tested positive for HIV.

I was 23. My boyfriend and I had been living together for a year, and we called each other “soulmates.” But HIV is a litmus test for whether someone really is a soul mate, and John failed miserably.

He treated me like a leper every single day! I was afraid of being single, so I tolerated his rage and cruelty for the next two years. Finally, I kicked his ass out.

All that abuse hacked away at my self-esteem. The support of my friends and family helped me through that scary and stressful time. Being a full-time college student at Cal State Northridge and doing a lot of public speaking and interviews also helped. It rechanneled my pain and fear into ways I could benefit others.

Dr. Tilkian gave me hope that I could stay healthy. I became involved in alternative treatments through holistic healers I met at Louise Hay’s weekly Hayrides and at Marianne Williamson’s Center for living. I became healthier than ever.

This helped me separate myself from all the fatalistic dogma medical sources and the media were imposing on anyone HIV-positive. We were slapped with timelines: supposedly, we could remain asymptomatic for up to five years. Then we’d get AIDS, and succumb to a nightmarish death, within two years. AZT helped fulfill that prophecy, usually much quicker than the timeline.

I got my Bachelor’s in Art, then completed a Master’s program in counseling. While doing an internship, I bought a ’52 Packard from a friend; then side-hustled as a driver and extra on the film Ed Wood. Johnny Depp’s bodyguard and driver became my husband.

Ben and I moved to Albuquerque, and I worked in the HIV field over the next four years. My career was great. But my marriage? Not so much. I ended it after three years.  And that, along with several other stressful things, led to my burn out.

I knew of the New Mexico School of Natural Therapeutics, and I completed the school’s six-month, 750-hour program for massage therapy.  I returned to LA as a nationally certified massage therapist, and picked up a permit application. It was insulting to learn LA Police Commission was in charge of certifying massage therapists – but it got worse. Applicants needed to submit a doctor’s letter stating they were HIV- and Hepatitis C- negative!

I knew the U.S. Supreme Court added HIV to the Americans with Disabilities Act in 1997. The LA Police Commission was messing with the wrong HIV+ massage therapist.

I contacted the HIV & AIDS Legal Services Alliance, and they provided me with a lawyer. The Police Commission was funded by the U.S. Department of Health and Human Services, so Brad Sears and I literally made a federal case about it.

Our grievance ended after a year, and we won. The commission had to remove all discriminatory wording from permit applications and send permits to anyone previously denied one because of HIV or Hep C.  Plus, they had to conduct HIV educational trainings for their staff.

Recently, Brad told me he cited our case in another discrimination case. That is one of many things that make me think it was all worth it.

'My goal was to criticize him and get people to laugh at him at the same time… So, I dreamed big. A big condom, that is. Draped over Jesse Helms’ house.'
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We Put a Giant Condom on a Senator’s House
Recording by Peter Staley
Story by Irwin Rappaport & Peter Staley
Photo from video footage (c. 1991) taken by the late Robert Hilferty

In his 30-year career as a U.S. Senator from North Carolina, Jesse Helms was known as “Senator No.” He vehemently opposed the end to racial segregation. He fought against other civil rights legislation including voting rights. He led a filibuster against making Martin Luther King, Jr.’s birthday a national holiday. He was against abortion and opposed the United Nations.

When he felt threatened by a Black candidate running for his Senate seat, Helms’ campaign released a video showing a pair of white hands crumpling a rejection letter while the narrator said, “You needed that job, but they had to give it to a minority because of a racial quota.”  So, this was a hateful guy who would do anything to stay in power and to stop the march toward equality and justice for minorities and women.

I’m Peter Staley. My career as an AIDS activist began in 1987 when I joined the organization ACT UP. There, I became an active member. I planned and participated in protest actions and got arrested 10 times. In 1991, I founded a spin-off of ACT UP called the Treatment Action Group, or TAG for short.

The LGBT community was another target of Helms’ hatred. He was the most vocal opponent in the Senate for federal funding for AIDS research and treatment.

Speaking about the LGBT community, he said, “It’s their deliberate, disgusting, revolting conduct that is responsible for this disease.”

He called us “perverted human beings.” In 1988, he introduced a so-called Helms Amendment, proposing to amend legislation that funded AIDS research and treatment. The amendment prohibited the use of any federal funds to ”promote, encourage, or condone homosexual activities.” It passed with only 2 objections in the Senate and only 47 “no” votes in the House.

Bigotry prevailed against sensible public health policy. An effective HIV prevention campaign for the LGBT community, which was the group most impacted by HIV and AIDS, would have included materials about how to have safe sex. Helms’ amendment endangered more lives — gay, bi and straight — because he didn’t want the government to fund anything that would recognize LGBT sexuality or even our existence.

I’d had more than enough of this bigoted, small-minded man.

A supposed public servant had contributed to the death of my friends and was standing in the way of fighting the disease. Someone needed to confront him, to make him uncomfortable. My goal was to criticize him and get people to laugh at him at the same time. And I wanted TAG to stage a dramatic action soon after we formed the organization. So, I dreamed big. A big condom, that is. Draped over Jesse Helms’ house.

We found his address through a gay man who worked in the Senate. We took photos of the two-story brick Colonial house. Once we knew the standard size of a door and did some fancy math, we knew how large the condom needed to be. We found companies that made huge inflatables like a big blow-up gorilla you might see in front of a car dealership. The lowest bid for the giant condom, made from parachute material, was $3,500. But we were a new organization with little money.

One day while vacationing on Fire Island, I’d had a fight with my boyfriend at the time, journalist Kevin Sessums. He thought my idea for this Helms project was too risky. Kevin went to his friend, music industry legend David Geffen for moral support. But instead of consoling Kevin, David agreed with me. Later that day on the beach, David Geffen handed me a wad of cash, $3,500, and told me to keep his involvement a secret. We had the funds we needed and ordered the inflatable condom.

After the condom arrived, we stenciled the front of it with a message we wanted to have front and center for all the TV cameras. It read: “A CONDOM TO STOP UNSAFE POLITICS. HELMS IS DEADLIER THAN A VIRUS.”

We did a practice run so that we knew how long it took to blow up the condom. We scheduled the action on September 5, 1991, during the Senate’s summer recess while Helms was out of town. We knocked on his door the night before to make sure no one was home. CNN and all the local TV stations were told we’d be doing a demonstration at a politician’s house. They were to meet us at our Arlington, Virginia motel early the next morning, and follow our rented U-Haul truck.

As news cameras rolled, we arrived at Helms’ house with our equipment: the giant condom in a large duffel bag, a heavy portable generator, a long extension cord, two ladders, rubber mallets, plastic stakes, one of those early clunky cell phones, a small cold-air blower for the ground, and a large blower with a custom-built stand for the roof.

We pushed and pulled the duffel bag and air blower up a 28-foot extension ladder to the roof. We unfurled the condom and connected it to the blowers. Other team members staked the bottom of the condom into the grass. Then we prayed the cops wouldn’t arrive until after we’d inflated it. The first police car arrived minutes later, just as the reservoir nipple at the top of the condom was rising over the house. One of the policemen got out of his car, took a look at the improbable scene in front of him, and chuckled.

After spending a lot of time on the radio with their bosses, the cops asked us for our driver’s licenses, wrote down our addresses, and told us it was up to the Senator to press charges or not. The condom stayed up for 15 to 20 minutes, and the press got all the photos and videos they needed. The cops allowed us to climb back up onto the house to take down the condom ourselves.

All we got was a ticket for parking the truck in the wrong direction. We were free to go and could take the condom with us. It’s now in Los Angeles at the One Archives.

That night, CNN and local TV stations around the country played short funny clips of the action. Senator Helms complained about it on the floor of the Senate a week later, calling us “radical homosexuals.” But he never pressed charges and never passed another life-threatening AIDS amendment.

Toward the end of his career, Helms supported increased funding to prevent mother-to-child transmission of AIDS in Africa, but he never supported more funding to fight AIDS in the U.S. He died in 2008.

'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.'
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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.”

'She named AIDS as one of the most deadly killers of African-Americans. "And I think anyone who sincerely cares about the future of black America had better be speaking out."'
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Coretta Scott King, 1927-2006
Recording by Carmen Ejogo
Story by The AIDS Memorial and Irwin M. Rappaport

Coretta Scott King spoke out in favor of equal rights for the LGBTQ community when she could have damaged her position in her church and community. Her support was lambasted by some African-American pastors, but she was defiant and called her critics “misinformed” and said that Martin Luther King Jr.’s message was one of equality and inclusion.

I’m Carmen Ejogo, and I had the honor of portraying Coretta Scott King twice, in the television movie Boycott and in the feature film Selma.

Following her husband’s death, she founded and developed programs for The King Center in Atlanta, which trains people in Dr. King’s philosophy and methods, and contains the largest archive of documents from the U.S. civil rights movement.  She led the enormous lobbying and education effort that led to the federal holiday on the birthday of Dr. King.  She was a strong anti-war advocate and a leader in campaigning on behalf of poor people and economic justice.

King’s first public foray into the gay rights movement happened during her leadership of the 20th anniversary of the 1963 March on Washington. She pledged her support for amending the Civil Rights Act to protect lesbians and gays as a protected class of people.

She quoted her late husband who said, “Injustice anywhere is a threat to justice everywhere,” and she advocated for inclusion and a broad coalition of civil rights causes:

“I appeal to everyone who believes in Martin Luther King Jr.’s dream to make room at the table of brotherhood and sisterhood for lesbian and gay people. Gays and lesbians stood up for civil rights in Montgomery, Selma, in Albany, Georgia and St. Augustine, Florida, and many other campaigns of the Civil Rights Movement. Many of these courageous men and women were fighting for my freedom at a time when they could find few voices for their own, and I salute their contributions.”

Ms. King spoke out against a constitutional amendment prohibiting same-sex marriage and reminded the public that “gay and lesbian people have families, and their families should have legal protection, whether by marriage or civil unions.”

In the 1980s, King comforted gay friends with AIDS and with help from her assistant Lynn Cothren, an openly gay man, she created a welcoming environment at The King Center and used their resources to educate the local community about the disease.

In a 1999 speech to launch an AIDS Memorial Quilt initiative for historically black colleges and universities, she named AIDS as “one of the most deadly killers of African-Americans. And I think anyone who sincerely cares about the future of Black America had better be speaking out.”

She reminded audiences that AIDS was far from only a disease afflicting gay people.  King spoke at both the U.S. Conference on AIDS and HIV Prevention Leadership Summit. When one of her close gay friends died, she hosted his family and friends for a day of sewing stitches on a panel that would become part of the AIDS Memorial Quilt.

Coretta Scott King passed away in 2006.  As a fitting tribute to her advocacy for justice, respect and love for all people, the crypt where she is buried at The King Center is inscribed with this passage from Corinthians 13:13:

“And now abide faith, hope, love, these three; but the greatest of these is love.”

'He said "you’re as sick as your secrets." He counseled young people about protecting themselves from contracting HIV.'
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Michael Jeter, 1952-2003
Recording by Annette Bening
Story by Irwin Rappaport and Annette Bening
Photo from “Evening Shade” (CBS)

Kids and kids at heart knew Michael Jeter as “The Other Mr. Noodle” on Sesame Street.  Others would recognize him as Eduard Delacroix, the death row prisoner with pet mice from the film The Green Mile, or as the hilarious homeless man with AIDS who became a balloon-bearing birthday singer in drag in The Fisher King.

Standing at 5 feet 4 inches, Michael was the unlikely and excitable assistant football coach to Burt Reynolds on the series Evening Shade.  He won an Emmy Award for that role, and a Tony Award for his performance in the Broadway musical Grand Hotel.

I’m Annette Bening.  Kevin Costner and I had the privilege of working with Michael on the film Open Range.  He was an absolute delight, a hard worker, a jokester and he had a heart of gold.

Other notable credits for Michael included a sweet mental hospital patient in Patch Adams, a mercenary hunting dinosaurs in Jurassic Park III and Emmy-nominated guest starring roles on the television series Picket Fences and Chicago Hope.

Michael was candid about his battles with drug and alcohol addiction, which led him to quit acting for a while, until he was brought back to TV with a small role in Designing Women.  In his Tony Award acceptance speech, he offered himself as living proof that people with an addiction can stop, can change their lives one day at a time, and that their dreams can come true.

Michael was also open about his homosexuality and HIV-positive status, disclosing it in an interview with Entertainment Tonight in 1997, where he said “you’re as sick as your secrets.”  He counseled young people about protecting themselves from contracting HIV.

In Grand Hotel, Michael portrayed Otto, a mortally-ill small-town bookkeeper who wants one night living the good life in the big city before he dies.  Reviewing the show for The New York Times, Frank Rich wrote, ”Mr. Jeter lets loose like a human top gyrating out of control — literally breaking out of his past into a new existence.”

Michael Jeter died unexpectedly of an epileptic seizure in 2003, leaving behind his partner of many years, Sean Blue.  Our film Open Range and his last film, The Polar Express, were both dedicated to Michael.  As Robin Williams observed when Michael died, “He lit the place up.”

'I recall your memorable speech before the Democratic National Convention in 1980, as you became the first African American and first gay man to be placed in nomination for the Vice Presidency of the United States from the floor of the convention.'
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Melvin Boozer, 1945–1987
Story & Recording by Gil Gerald

Melvin Boozer, you deserve far more recognition that you have ever received.

I recall your memorable speech before the Democratic National Convention in 1980, as you became the first African American and first gay man to be placed in nomination for the Vice Presidency of the United States from the floor of the convention.

We were both activists in Washington in the late 1970s.  Melvin was at my home to come to meetings of the DC Coalition of Black Lesbians and Gays, but he was mostly committed to other efforts, including the Langston Hughes-Eleanor Roosevelt Democratic Club.  I hosted a meeting at my home, between the Black lesbian and gay community and the then National Lesbian and Gay Task Force’s Executive Director, Virginia Apuzzo, after he was fired and replaced by Jeff Levy.

In April 1983, Melvin was among those present at my home, when I showed the Black gay men gathered there the CDC’s “Morbidity and Mortality Weekly Report” with information indicating that Black folks were identified as 20% of AIDS cases.  We were only 12% of the United States’ population. Most of the men gathered there that day, like Melvin, are no longer alive due to AIDS.

Melvin was simply brilliant, really good with words, a good speaker, with evident critical thinking ability.  There is far much more to be said about Melvin …

Somebody should.

'Jeff taught me many things. But most importantly, he gave me my defiance. It saved my life.'
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Jeff Moreland
Story & Recording by Lee Raines

Jeff Moreland was my first boyfriend. We met in college. He was a year younger than me, but much wiser and more worldly. He was brilliant and talented and funny and very intense, and I was sheltered and shy. He was also openly, defiantly gay, and I wasn’t sure what I was. All I knew was I had fallen in love, “all at once and much, much too completely.” I was Mad About the Boy.

Jeff quickly grew tired of my dithering about coming out of the closet. He’d shout, “YOU SAY YOU LOVE ME BUT YOU DON’T WANT TO BE SEEN WITH ME IN PUBLIC? YOU DIDN’T SEEM SO NERVOUS BACK IN THE BEDROOM!”

He had a point.

Jeff took me to my first gay bar, the Georgetown Grill, in Washington, D.C. I found it grim, furtive and joyless, and swore I’d never go back. Undaunted, he talked me into a weekend trip to New York City “to see some shows” and steered me onto Christopher Street.

I’d never been to Greenwich Village. I was self-conscious, fretful, wondering if I’d been duped somehow, when Jeff suddenly grabbed my hand and wouldn’t let go. I tried to yank my hand away but his grip was strong and I was too embarrassed to make a scene. He leaned in, whispered, “You have to be defiant at first,” and pulled me down the sidewalk.

Panic-stricken, I bumped into a humpy guy with a mustache wearing a leather vest. He eased around me with a comical, nasal, “Careful, Mary!” Someone shouted, “HEY, GIRLS!” It wasn’t directed at us but it sounded like encouragement.

As we walked, I noticed locals on their stoops smiling at us. I realized I was on Christopher Street holding hands with a boy I loved with all my heart and started to enjoy the sensation. By the time we reached Seventh Avenue, I was walking on air, joyous and giddy with gay liberation.

Jeff dragged me out of the closet that afternoon. He taught me many things.  But most importantly, he gave me my defiance. It saved my life.

Jeff died during the plague early on, but I still feel his hand in mine. He pulls me forward and whispers, “Be Defiant!”

Light a candle for those we have lost to AIDS. But remember also to be defiant.

'The LA County Board of Supervisors unanimously approved a motion to name the LA County AIDS ward after Schrader in tribute to his courage, his vision and his tenacity.'
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Rand Schrader (1945 – 1993)
Recording by David Bohnett
Story by Karen Eyres and David Bohnett

Rand Schrader was an openly gay activist who fought discrimination and homophobia to become one of the first two openly gay California municipal court judges appointed in 1980 by then-Governor Jerry Brown.  This was a time when the majority of voters in the state supported conservative Ronald Reagan for president.

I’m David Bohnett, and I was Rand’s partner for 10 years. 

As a UCLA Law School student in the early 1970s, Schrader volunteered countless hours providing legal guidance to leaders at the Los Angeles LGBT Center (then called the LA Gay Community Services Center).  Many of his cases involved police discrimination against gay men.

After graduating from UCLA in 1973, Schrader took a job with the City of Los Angeles, becoming the first openly gay staffer in the city attorney’s office.  Then-City Attorney Burt Pines was impressed with Schrader’s work, saying the young staffer was able to command respect from people across the political spectrum.  In 1980, Governor Jerry Brown appointed Schrader to the LA Municipal Court and immediately received pushback from conservative politicians expressing public outrage at the judicial appointment of an openly gay man.  Brown held firm on his decision.

In 1987, Los Angeles County established an AIDS Commission, and Schrader was among its first cohort of commissioners.  At the time, LA county had surpassed San Francisco in the number of HIV and AIDS cases.  San Francisco had established an AIDS ward at San Francisco General Hospital in 1983, but there was nothing comparable in LA County.

The Los Angeles chapter of ACT UP organized a steady stream of demonstrations at LA County Medical Center, demanding that persons living with HIV and AIDS be provided with a specialized unit that would protect them from discrimination and neglect.  As a commissioner, Schrader found himself siding with the activists and at odds with the AIDS Commission’s chairman, Rabbi Allen Freehling, who argued that patients put in a separate unit would feel isolated.  The commission formed a task force to determine a course of action, and soon it became apparent that people living with AIDS would benefit significantly from access to having their own clinic.

In 1988, the LA County Hospital finally opened a ward dedicated to AIDS healthcare.  The next year, Schrader was elected the new chair of the AIDS Commission.

When Schrader was diagnosed with AIDS-related illness in 1991, he went public with his condition and continued his work in the municipal court and on the AIDS Commission.  Two years later, the LA County Board of Supervisors unanimously approved a motion to name the LA County AIDS ward after Schrader in tribute to his courage, his vision and his tenacity.

Rand Schrader died of AIDS-related illness on June 13, 1993 at the age of 48.

As I said in 1999, “When Randy died, I honestly did not know how I could go on. But I had friends. I had a family — mine and Randy’s. And we all shared our grief and comforted one another during our time of loss. But what if I had been alone in that grief?  What becomes of a man or woman when one loses a partner whom no one else knows was a partner?  What happens to people who are afraid to tell the truth about who they are and whom they love?”

While I grieved Randy’s passing and with these thoughts in mind, I created the very early social network e-commerce company GeoCities.com, where people could create free personal web pages on the internet; give voice to their hopes, dreams and passion; and find connection with one another. 

Randy’s legacy also endures in the HIV/AIDS clinic he helped to create.  Today, the University of Southern California manages the Rand Schrader HIV Clinic, where more than 40 faculty members provide primary and specialty care to more than 3,000 patients in LA County.

Rest in peace, my dear Randy.

'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.'

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.

'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’s so many who aren’t here any longer.'
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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.

'The stigma is more dangerous than the disease. We still have a lot of fighting to do for the people who don’t have the privilege of cost-effective medication.'
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Battling the Stigma
Story & Recording by Hernando Umana

This is by far the most important, scary, liberating post of my life. Here we go — 10 years ago, at a young, young age of 20, I was diagnosed with HIV.

I’ll never forget the moment they told me. It wasn’t possible — I had only slept with three people in my life! This can’t be true.

The first words out of my mouth were, “How long do I have to live?”

That’s how uneducated I was about. it. It had been drilled in my head that gay people get HIV because of wrong-doings and they deservingly die from it. Well, I’m here to shut that shit down.

There is nothing wrong with me, and I am healthier than I’ve ever been. In the last 10 years, I’ve met countless of HIV-positive men. Some of these men are so affected by the stigma that they don’t tell a soul about their status, even go as far as not taking their medication.

In our extremely privileged community, the stigma is more dangerous than the disease. We still have a lot of fighting to do for the people who don’t have the privilege of cost-effective medication.

So I stand on the shoulders of people like @staleypr, who risked his life for us. I stand on the shoulders of the millions of people who had to suffer and die from this disease. I stand on the shoulders of the gay men who were forced out of the closet in such a scary time. These men and women fought and died to get to where we’re at now: To take a pill at night and never have to worry about dying. To get the disease to a point where it is impossible to transmit (undetectable).

How can I be ashamed of this? I honor their legacy by telling my story. So let’s talk about it. Let’s ask questions. Take your PrEP. Use condoms. Be safe. Let’s end this stigma forever and eventually end HIV forever!

To those who have questions:  Don’t feel dumb asking anything about it. It’s not your fault there’s such a lack of education out there.

To those who are afraid to talk about their status:  You’ve got at least one guy right here 🙂  You are loved.  You are beautiful, and there is nothing wrong with you.

I, Hernando Umana, am a proud gay man LIVING with HIV. Fuck, that feels good to say.

'My intention in presenting these works is to provoke my community into action.'
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Ray Navarro, 1964-1990
Story & Recording by Debra Levine

Ray Navarro died on November 9, 1990. He was 26 when he died, and I loved him from the moment I met him.

His image is now often circulated, especially the fantastic one of him as Jesus, a reporter from the Fire and Brimstone Network, interviewing people at the St. Patrick’s demonstration.  But on the anniversary of his death, it’s as important to remember he was prescient in his critical analysis, and he left us with an archive of important writing.

In his Outweek obituary, Gregg Bordowitz, Catherine Gund and I wrote:

“Ray always identified AIDS as a crisis among people of color even when ACT UP, the media and most other people — including people of color — hadn’t absorbed that reality.”

We quoted from one of Ray’s essays, the powerful “Eso, Me Esta Passando.” In that essay, he addresses how homophobia remains a significant obstacle in designing effective public health policies in Latino communities in the U.S. His voice is so moving, and his efforts to shift the prevailing discourse of victimhood never ceased until the moment he died.

Ray wrote:

“I am an HIV-positive Chicano gay man from Simi Valley, California. By looking at me, you may not be able to see any of those things. You will also not be able to tell I am college educated, a video maker and scared to death of my own culture. For the last several years, I have grown comfortable with my gay identity, I have marched in the streets, go-go danced in bars, and wept at the death of people I respected who have died of AIDS. So now I am also an AIDS activist. Full time.”

And in conclusion Ray wrote:

“My intention in presenting these works [AIDS activist videos that he curated, created specifically for Latinos] is to provoke my community into action. Here are political analyses, protest images, sexy scenes, angry young men, defiant feminists, and gente. You will be hard pressed to find an ‘AIDS victim.’ Rather, we are Latinas and Latinos living with AIDS.”

'His tombstone simply reads: When I was in the military, they gave me a medal for killing two men and a discharge for loving one.'
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Leonard Matlovich (1943-1988)
Recorded by Lt. Gen. Leah Lauderback
Story by The AIDS Memorial and Irwin M. Rappaport
A version of this story first appeared on The AIDS Memorial on Instagram
Photo by Ted Thai, Time magazine

Leonard Matlovich was a decorated Vietnam War veteran who came out as gay to challenge the U.S. military’s ban on gays and lesbians.

Following in the footsteps of his Air Force veteran father, Matlovich voluntarily enlisted in the Air Force in 1963 at the age of 19 and served three tours of duty. He received a Bronze Star for heroism under fire, and a Purple Heart after he was seriously wounded by a land mine.

I’m Air Force Lieutenant General Leah Lauderback. Openly LGBTQ servicemembers like me owe a debt of gratitude to the courage of Leonard Matlovich and I’m deeply honored to tell his story.

After serving in Vietnam, Sgt. Matlovich was posted at an air base near Pensacola. There, he started visiting gay bars and, at the age of 30, had his first relationship with a man but stayed in the closet in the military for over another year.

The Air Force assigned Matlovich to teach race relations, and he traveled the country to coach other instructors. That experience helped him to understand the similarities between discrimination on the basis of race, and discrimination against the gay and lesbian community.

After reading an article by gay rights activist Frank Kameny in the newspaper The Air Force Times, he contacted Kameny and they devised a plan with the ACLU to challenge the ban on gays and lesbians in the military. On March 6, 1975, he hand-delivered a letter to his commanding officer announcing that he was gay. His brave pronouncement landed him on the cover of Time magazine in September of
1975.

When he refused to promise never again to engage in homosexual conduct, he was
discharged from the Air Force in October of that year. He sued for reinstatement and, after a long court battle, a federal judge ordered the Air Force to reinstate and promote him. Rather than risk discharge for a made-up reason or an appeal of the court decision by the military, Matlovich accepted a financial settlement and dropped the case.

Leonard’s activism continued with his fundraising and advocacy efforts against Anita Bryant’s campaign to overturn a non-discrimination ordinance in Florida and against an attempt to ban gays and lesbians from teaching in California.

He moved to Guerneville, California on the Russian River, where he opened up a pizza restaurant. Later he moved to San Francisco and worked as a car salesman. In 1986, after fatigue and a prolonged chest cold, he tested positive for HIV. In 1987, Leonard came out as HIV positive on “Good Morning America.” He continued his advocacy and later that year he was arrested in front of the White House protesting the Reagan Administration’s inattention to HIV and AIDS.

Leonard Matlovich died on June 22, 1988. He chose to be buried in Congressional Cemetery in Washington D.C. where, unlike Arlington National Cemetery, he could have a tombstone which omits his name. His tombstone simply reads: “When I was in the military, they gave me a medal for killing two men and a discharge for loving one.”

As a final joke, Leonard chose a grave site in the same row as J. Edgar Hoover, the infamous FBI Director who is widely believed to have been a closeted gay man.

Matlovich was one of the 50 people first selected for inclusion in the National LGBTQ Wall of Honor at the Stonewall National Monument in New York City. Leonard’s courage paved the way for service members like me to openly serve.

Thank you, Leonard “Mat” Matlovich, for your tenaciousness and your leadership. And lastly, I thank you for your service to this nation.

'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.'
- Kiyoshi Kuromiya
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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.

'[Alexis] was ahead of her time. Despite her career suffering… 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.'
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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!

'Lenny, Carlos, Jeffrey, Andrew, Eddie and many others are all heroes ... They pushed on, being injected, prodded, biopsied, examined, humiliated, ostracised and judged.'
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American Love in Paris, 1986
Story & Recording by Dom Denny

I was driving home the other night, when the late Rose Laurens’ 1986 hit “American Love” came on my playlist.  Instantly, I was back:  a rainy night in Paris.  After supper, Lenny and I went to a small club in the Marais.  We drank beer, peppermint schnapps, got a little crazy, danced for hours.  I watched Carlos dancing and sweating, his shirt off, his perfect body gyrating under the lights, not a care in the world.  It was a wonderful night.

There is a sadness in the melody of the track that evokes a kind of unexplainable pain.

There was a cohort of American boys there, many I knew, including Lenny’s little brother Jeffrey. All in their early twenties, courageous and hopeful that time in Paris may mean they had their lives ahead of them. Sadly, none did. Each of those boys died of AIDS within three years.

Their courage and willingness to participate in drug trials at the Pasteur Institute was critical in the development of the medications we now take for granted. The toxicity of the drugs was grotesque at times. I can still see Lenny heaving and sweating, his tolerance to new combinations lessened as his immune system just broke down, constantly trying to fight vile opportunistic infections but never once willing to pack in and go home to Miami.

I loved that boy deeply and to spend that time with him as his life ebbed away was a privilege. He is in my heart forever, and it is amazing how the power of a song can rip open your soul again, 30 years after he died.

Lenny, Carlos, Jeffrey, Andrew, Eddie and many others are all heroes. They literally lay down their lives for us. Knowing as we did that there was no cure, they pushed on, being injected, prodded, biopsied, examined, humiliated, ostracised and judged.

It was a bizarre time. For me, it redefined the word loss. God love them and thank them for their selflessness.

I miss Lenny and will love him forever. This is our history.  It is as painful as any chapter recording marginalized minority groups who have experienced adversity, exclusion and the mass loss of a generation of young men.

'Ryan White 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.'
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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.

'Speaking at rallies and demonstrations, she was loud, forceful and eloquent. By now she was known as the AIDS Diva.'
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Connie Norman (1949-1996)
Story & Recording by Peter Cashman

Constance Robin Norman — Connie — was, contrary to popular belief, born right here in California, in Oxnard in 1949. She had been a boy called Robbie who would later transition to Connie at the age of 26. That was in the mid 1970s.

Hello, I’m Peter Cashman, and Connie was my dear, dear friend.

Many of her formative years were spent in Texas in the Houston area, where her grandmother Mabel Murphy owned a bar. Connie would end up working for Mabel, and there she gained a good deal of the Connie that we came to know. The hard-scrabble life in the South made her streetwise and tough, but with a great sense of humor like Mabel.

Many years later, reflecting on her life, she said, “I often tell people I am an ex-drag queen, ex-hooker, ex IV-drug user, ex-high-risk youth and currently a post-operative transsexual who is HIV positive.”  And she added very poignantly, “I have everything I’ve wanted, including a husband of ten years, a home and five adorable longhaired cats…. I do however regret the presence of this virus.”

She had discovered she was HIV-positive in 1987.

Connie had met Bruce Norman in San Francisco. Bruce was a gay man who became her soul mate and husband. He had grown up in the Altadena.

The highlight of Connie’s Bay area years was as a manager at the Trocadero Transfer, the world-famous disco in San Francisco’s Mission District. “Disco Connie” with her huge oriental fans immortalized in the documentary Wrecked for Life.

By the mid ’80s, she and Bruce would attend the weekly “Hay Ride” gatherings in West Hollywood hosted by self-help practitioner Louise Hay. That was where I first remember seeing her and Bruce and many other folks who would join the new national AIDS activist group ACT UP when a chapter formed here in Los Angeles in December 1987.

Connie said she saw ACT UP in the Pride Parade in June of ’88.  Straightway she knew that was where she belonged and joined up. She had never attended college; in fact, she’d been a teen runaway on the streets of Hollywood. But she had an insatiable thirst for knowledge. Completely self-taught she put in an enormous amount of work. She would end up co-hosting a weekly cable show in Long Beach. She would write a regular column for the Southern California LGBT newspaper Update. And she would become the very first queer person in the U.S. to host a talk show on AM talk radio, broadcasting from Hollywood.

Connie was fierce and strong, a force to be reckoned with, whether talking with legendary talk radio host Tom Leykis on KFI or with someone she didn’t agree with, like Wally George, appearing on his infamous shock jock talk show on KDOC 56. Speaking at rallies and demonstrations she was loud, forceful and eloquent. By now she was known as the AIDS Diva, to which I added “Self-Appointed and Self Aggrandizing,” typical of the banter between her and I during those times. So she became a statewide figure and was ACT UP/LA’s representative on the LIFE AIDS Lobby.

One thing that really made Connie stand out to me and so many others was her nurturing instinct, her kindness and her ability to speak to people from all walks of life. Connie educated, informed and spoke from the heart, an innate talent that so impressed people. Later she became public policy director at Pasadena’s AIDS Service Center, continuing the work she’d done with ACT UP. Talking with policy makers, lawmakers, locally, in Sacramento and in Washington.

As a respite from the death and dying that surrounded all of us, Connie and Bruce annually took time out with numerous friends, including myself, in their beloved Kauai. A time to tend to rebuilding health and spirit and befriending queer folk all over the island. Her last trip was in late 1995. Her health was failing, and she rapidly declined during the first part of 1996, passing on Bastille Day that year.

Later that year in early October, ACT UP folks gathered from around the country for a second Ashes protest — scattering the ashes of loved ones on the White House lawn. So, my final goodbye to Connie was as I clung to the White House fence, scattering her ashes onto that famous lawn.

Connie Norman – a beloved warrior who remains in our hearts and dreams.

'That interview saved my life. My mother always had PTL on and I was 12 when I heard your interview ... I suddenly knew that I could be gay and Christian, and I didn't have to kill myself.'
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Rev. Dr. Stephen Pieters:  Survivor & Trailblazer
Recording by Jessica  Chastain
Story by Irwin M. Rappaport

The Rev. Dr. A. Stephen Pieters is an AIDS survivor, an AIDS activist and a pastor who ministered to people with AIDS from the earliest years of the AIDS epidemic.  Steve received his Master of Divinity Degree from McCormick Theological Seminary in 1979 and became pastor of the Metropolitan Community Church in Hartford, Connecticut.

In 1982, Steve resigned his position as pastor in Hartford and moved to Los Angeles.  A series of severe illnesses in 1982 and 1983 eventually led to a diagnosis in 1984 of AIDS, Kaposi’s Sarcoma and stage four lymphoma.  One doctor predicted he would not survive to see 1985.

And yet, 1985 proved to be a watershed year for Rev. Pieters.  He became “patient number 1” on suramin, the first anti-viral drug trial for HIV which led to a complete remission of his lymphoma and Kaposi’s sarcoma.  Unfortunately, suramin was found to be extremely toxic, and it came close to killing him twice.

Also in 1985, during his suramin treatments, he appeared via satellite as a guest on Tammy Faye Bakker’s talk show, Tammy’s House Party, on the Bakkers’ PTL Christian network.  Tammy Faye took a huge risk with her evangelical Christian audience by inviting Pieters on the program and advocating for compassion and love for gay people and people with AIDS.

I’m Jessica Chastain, and portraying Tammy Faye in her interview with Rev. Steve Pieters was one of the highlights of my role in the 2021 film The Eyes of Tammy Faye.  The interview was done via satellite because of fears that the PTL crew would not be comfortable with an in-person interview.

Steve told People magazine that: “She wanted to be the first televangelist to interview a gay man with AIDS.  It was a very scary time and there was still a lot of fear about AIDS and about being around a person with AIDS.  And I thought the opportunity to reach an audience that I would never otherwise reach was too valuable to pass by.  I’ve had people come up to me in restaurants and tell me, ‘That interview saved my life. My mother always had PTL on, and I was 12 when I heard your interview, and I suddenly knew that I could be gay and Christian, and I didn’t have to kill myself.'”

Tammy Faye’s support for people with AIDS and the gay and lesbian community continued.  Bringing
along her two children, she visited AIDS hospices and hospitals, went to LGBT-friendly churches, and
participated in gay pride parades.

When the Bakkers’ PTL network and Christian amusement park were embroiled in scandal and she became the subject of jokes and Saturday Night Live skits, she said in her last interview, “When we lost everything, it was the gay people that came to my rescue, and I will always love them for that.”

Tammy Faye passed away from cancer in 2007, but Rev. Pieters continues to thrive both personally and professionally.  He has served on numerous boards, councils, and task forces related to AIDS and
ministering to those with AIDS, and his series of articles about living with AIDS was collected into the
book I’m Still Dancing.  For many years, Pieters served as a chaplain at the Chris Brownlie Hospice,
where he discovered a gift for helping people heal into their deaths.

Pieters was one of twelve invited guests at the first AIDS Prayer Breakfast at the White House with U.S. President Bill Clinton, Vice President Al Gore, and the National AIDS Policy Coordinator in connection with World AIDS Day 1993, and President Clinton spoke about Rev. Pieters in his World AIDS Day speech on December 1, 1993.

Pieters has been a featured speaker for AIDS Project Los Angeles and his story is told in the
books Surviving AIDS by Michael Callen, Voices That Care by Neal Hitchens, and Don’t Be Afraid Anymore by Rev. Troy D. Perry.  He has received many awards for his ministry in the AIDS crisis from
church organizations, the Stonewall Democratic Club in Los Angeles, and the West Hollywood City
Council.

In 2019, his work in AIDS Ministry, including his Tammy Faye Bakker interview, became part of the LGBT collection in the Smithsonian National Museum of American History.  Pieters left his position with UFMCC AIDS Ministry in 1997, earned a masters’ degree in clinical psychology, and worked as a psychotherapist at Alternatives, an LGBT drug and alcohol treatment center in Glendale, California.

Now retired, Pieters is busier than ever with speaking engagements, interviews, and finishing up his memoir, My Journey Through AIDS (I Keep on Dancing).  He has been a proud, singing member of the Gay Men’s Chorus of Los Angeles since 1994.

'I think back to the scared little boy who met Peter and now know you can’t ever be too much of yourself. Peter taught me that.'
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Peter Grant
Story & Recording by Danny Lee Wynter

“Christy Turlington’s legs are the bees knees” he said flicking through my mum’s copy of Vogue. I’d never seen anyone like him. Exquisitely dressed, Peter Grant, my mother’s childhood friend arrived in my life when I was 8. A time I was terrified of being me. I was aware of him throughout my childhood. I didn’t really know him but I knew how he made me feel. Awkward. Embarrassed. Brimful with self loathing. Peter was what kids today describe as a ‘femme queen.’ And every inch of him denoted his right to be so.

I heard little about Peter in the intervening years. Then one day I overheard my mum saying he had AIDS. The news paralysed me. At 11, it was something nobody in my surroundings was sympathetic to. I learnt of Peter’s death while in the midst of experiencing the routine humiliations of a young homosexual in high school. The skirting about the issue of why you don’t have a girlfriend. The shame of the changing rooms during games practice and feigning asthma attacks to be excused. When Peter died I was still denying the biggest part of me which only came to life in the art rooms or choir practice.

Peter’s funeral took place where he died, the London Lighthouse. I was asked to sing at the service. Hesitant at first, I made the connection as to why I’d been so scared of him. I felt I owed him an apology, so I sang Barbra Streisand’s ‘The Way We Were’ accompanied by the piano. There surrounded by his lover, family, friends and the staff who cared for him, I encountered for the first time a tribe unlike any I’d ever come into contact. I was 13. At one point my mum points to a severely handsome man sat holding his boyfriend’s hand. He was as ‘masculine’ as any man I grew up with. ‘That’s Guy!’ my mother’s friend whispered, ‘I wish he was my Guy!’ mum replied, my tiny frightened childish mind blown.

Years later I would come to experience the gay community’s own deep and complex relationship with the performance of masculinity and the chastising of those deemed ‘too femme’ or too much like Peter! I think back to the scared little boy who met him and now know you can’t ever be too much of yourself. Peter taught me that.

'I am grateful for how hard she fought to live long enough to help me grow into the almost-woman I was when she died. I will miss her forever.'
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Debbie Lynn Kellner, 1964 – 2004
Story & Recording by Crystal Gamet

My Mama, Debbie Lynn Kellner, August 2, 1964 – January 20, 2004.

My beautiful mama, who never knew she was beautiful and never got that message from this world.

I wish that I could tell her how beautiful she was. Losing my mother was like losing part of my own body. I compiled some pictures to share a little bit about who she was.

She was a woman who was born into extreme poverty to a family of ten. She was blessed to be a twin and have that incredibly deep connection in this world.

My mom could not read or write, and she suffered more physical violence than I can ever bring myself to describe — but she survived longer than the men who tried to kill her. She fought to graduate from high school, despite the incredible bullying she experienced for being in the special education program.

My mom contracted HIV at 21 and was convinced she would never have access to romantic love again in her life.  This was partially true.

So when she met Tom, he had just been released from prison and he was homeless, so he immediately moved in with us. Even though that got us kicked out of public housing, my mom was willing to overlook that, because at least she had someone who loved her.

Her ashes are buried with him, and I still find this fact sickening.

She survived to the age of 39. She survived the early years of the AIDS epidemic, despite chronic poverty, domestic violence, stigma and depression.

She loved all of my friends. and to the friends who were brave enough to show her love at the end when they knew she had AIDS, I will never forget. I am grateful for how hard to she fought to live long enough to help me grow into the almost-woman I was when she died.

I will miss her forever.

'Sylvester was a pioneer in the gay community. And during a time when most gay entertainers were in the closet, he wasn't. Sylvester was proudly out, and he paved the way in so many ways.'
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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.

'Richmond had the nickname, “Hollywood,” and inspired Tom Cruise’s character in the movie Days of Thunder.'
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Tim Richmond (1955-1989)
Recorded by Karleigh Webb
Story by The AIDS Memorial, Irwin Rappaport and Karleigh Webb
A version of this story first appeared on The AIDS Memorial on Instagram
Photo from Tim Richmond: To the Limit (ESPN)

NASCAR’s rough-and-tumble history has its share of legends and folk heroes down South. But a Northerner named Tim Richmond may be the wildest of the bunch.

Hello everybody, I’m Karleigh Webb. I’m a sports journalist with outsports.com, a transwoman athlete, an activist, and I’m a lifelong motorsports fan. As youngster watching NASCAR in the 1980s, I was a fan of Tim Richmond. Because he was that dude. High energy. Free spirit. Raw Talent.

NASCAR commentator Mike Joy recalled, “When he walked into a room, there was suddenly a party going on. And it was just that infectious enthusiasm for life and for racing that really defined him … He was fun to be around. He knew he was the center of attention, and he really kind of cherished it.”

Perhaps that’s why Richmond had the nickname “Hollywood,” and inspired Tom Cruise’s character in the movie Days of Thunder. He was fun even when he was trying to be serious. When team owner Rick Hendrick told Tim to clean up his appearance, the driver responded by appearing in a silk suit, clutching a purse, and a cane like an old woman.

The Tim Richmond story began in his native Ohio, with dreams of Indianapolis.  In 1977, he was Rookie of the Year at Sandusky Speedway and was a track champion. In 1978, he was the U.S. Auto Club’s national sprint car Rookie of the Year. In 1980, he was Indianapolis 500 Rookie of the Year. But after that, Richmond took an offer to head south to NASCAR.

He snagged his first of 13 career wins in 1982 on the road course at Riverside. By the end of the 1984 season, Esquire magazine tagged him one of the “best of a new generation.”  1986 was the breakthrough year. Driving for owner Rick Hendrick, Richmond became a Winston Cup championship threat — seven wins, third in the championship. And the Motorsports Press Association named both Tim Richmond and ‘86 Winston Cup Champion Dale Earnhardt as Co-Drivers of the Year.

In 1987, an illness reported as double pneumonia caused him to miss the first 11 races. But when Tim Richmond came back, boy, he came back.  He won at Pocono, and then followed it up back-to-back with a win at Riverside.  But after six more starts that year, he was too ill to keep driving.

He tried another comeback in 1988. NASCAR reported that he tested positive for banned substances and was suspended prior to start of qualifying for the Daytona 500 that year. Richmond denied the findings and challenged them publicly.

Days later, those substances were identified as Sudafed and Advil. Richmond sued NASCAR for defamation and later settled out of court. He was retested and reinstated later in the year but couldn’t find a ride for any team. By then the rumors concerning Richmond, HIV and AIDS were prevalent. He denied those rumors as well. A doctor friend claimed that Tim was hospitalized due to a motorcycle accident.

Tim Richmond died on August 13, 1989, at the age of 34.

Ten days after his death, his family announced at a press conference that he had died from complications from AIDS and was diagnosed during his breakthrough season in ‘86.  It was asserted that he had become infected through sex with an unknown woman.  A few months following his death, a Washington DC television station reported on sealed court documents and interviews that showed that a doctor employed by NASCAR had falsified drug test results to keep Richmond out.

Looking back at a brief yet brilliant career, Rick Hendrick concluded that Tim Richmond was 20 years ahead of his time.

“I think he was good for the sport,” Hendrick observed. “He had a tremendous following of fans. He could drive anything. Not afraid of anything. We need a little bit of that charisma today.”

During NASCAR’s 50th anniversary celebrations in 1998, Tim Richmond was named one of the top 50 drivers of all time.  In 2002, he was inducted into the International Motorsports Hall of Fame.

'When Bob spoke, he gave hope to people with AIDS that someone with the President’s ear was in their court, part of their tribe, and might help usher in an era when the federal government actually gave a damn about fighting AIDS.'
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Bob Hattoy, November 1, 1950 – March 4, 2007
Story & Recording by Jeremy Bernard

As Richard Berke wrote in The New York Times Magazine in 1993: “President Clinton learned a valuable lesson when he appointed Bob Hattoy to work in the White House: Never hire a dying man; he has nothing to lose.”

Bob Hattoy served as Associate Director of Personnel in the Clinton White House, but that title didn’t capture the fact that he was the LGBT community’s highest-ranking member and representative in the Clinton Administration. When he took the stage at the 1992 Democratic National Convention, he signaled a sea change in the attention that AIDS would get if Bill Clinton were to be elected President. Bob had learned only a few weeks earlier that his HIV had progressed to AIDS-related lymphoma.

Directing his anger to then-President George Herbert Walker Bush, he didn’t mince words: “We are part of the American family, and Mr. President, your family has AIDS, and we are dying, and you are doing nothing about it.”

“I don’t want to die,” Bob said. “But I don’t want to live in an America where the president sees me as the enemy. I can face dying because of a disease, but not because of politics.”

I’m Jeremy Bernard. I was at the convention when Bob spoke. I was working with David Mixner doing fundraising for Clinton and interacted with Bob throughout the campaign.

Bill Clinton’s presidential campaign was the first one to publicly seek and recognize support and donations from the LGBT community. That evening, like many, I wore a black armband to honor our friends who died of AIDS. When Bob spoke, he gave hope to people with AIDS that someone with the President’s ear was in their court, part of their tribe, and might help usher in an era when the federal government actually gave a damn about fighting AIDS. Bob also helped dozens of LGBT people get positions in the Clinton Administration.

Hattoy’s job as an unofficial LGBT representative in the White House was a thankless one. To many of those on the outside, he seemed like a political sell-out who couldn’t get them what they wanted. To those in the White House, he was an annoyance who was never satisfied with progress on LGBT issues.

Bob was a thorn in the side of the White House when they struggled with the unpopular “Don’t Ask, Don’t Tell” policy regarding gays in the US military. He publicly criticized that policy, comparing it to telling gays they could only be florists and hairdressers. As a result, Hattoy was moved out of the White House personnel office and relegated to being the White House liaison to the Interior Department. That job built upon his work for the Sierra Club, where was regional director for California and Nevada, and his service as Clinton’s leading campaign advisor on environmental issues.

Bob relished his role as an agitator in the administration. In his words, “I didn’t come to Washington to be a faceless federal bureaucrat. I came to Washington to be a bureaucrat in your face.”

Bob Hattoy died of complications from AIDS in 2007. At his request, his friends preserved his ashes in a Martini shaker.

'Every young man in ballet for future generations will be indebted to the mark that Rudolf Nureyev made on the art form. He has shaped the way we will craft our art forever.'
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Rudolf Nureyev, 1938-1993
Story & Recording by Christopher Wheeldon

The great male ballet dancer Rudolf Nureyev arrived in this world with a grand cinematic gesture on a train speeding across the Soviet Union, and departed having changed what it is to be a man in a female-dominated art form.

His onstage presence personified a marriage of masculinity and femininity combined. A panther and an exotic rose, magnetic and indisputably singular.  In 1961 and already an established young star in Russia, Nureyev risked his life in a stand off with the KGB and French authorities at Paris’ Orly Airport. This defection to the West from the USSR made him a subject of world television news, and perhaps the first internationally-renowned name in ballet. His subsequent relationship with London’s Royal Ballet and his famed partnership with Margot Fonteyn, who was remarkably 20 years his senior, further cemented Nureyev as an almost godlike figure on the international stages of the ballet world. 

Rudolf Nureyev’s life and career were wrapped in a blanket of excess and luxury, often reflected in his unique stagings of classical ballets, largely for the Paris Opera, where he served as Artistic Director until his death in 1993. 

His voracious sexual appetite for young men was renowned, and tightly woven through the more permanent romantic relationships of his life.  Ex-lovers putting up with short-lived dalliances with men understanding that even this fueled his artistic creativity and translated into the stage creature that his audiences adored. 

When I was a young ballet student at The Royal Ballet School, Nureyev was at the top of my list of influences. Never feeling particularly unique as a dancer myself, I marveled at his ability to transcend technique and exist onstage in a cloud of sensual perfume.

It was 1989, I was 16 and at lunch break, I was passing the company canteen. I glanced in and to my surprise there sat Rudolf Nureyev alone.  He signaled for me to come in.  I got closer and he spoke to me in an accent still rich with his homeland. 

“Carry me to studio, boy.”  That’s all he said. 

I recall thinking at the time that I wasn’t the strongest of young men, a bit of a late developer, but there was no way I wasn’t going to oblige him. Wrapped around my shoulders, cradled like a baby and weak with the AIDS virus that was draining away the life force from this indisputable poet of movement, I carried the great Nureyev up to the Covent Garden Studio. Three flights of stairs, praying that my knees wouldn’t buckle.

At this very moment in time, I was struggling to come to terms with my own sexuality. So afraid to come out to my parents who would fear my contracting the very illness that was already raging through this great man’s body. I left him in a chair at the front of the studio and said goodbye.

Three or four days later, he performed the role of Mercutio in a gala performance celebrating the 70th birthday of his most famous onstage partner Dame Margot Fonteyn.  His performance somewhat diminished, but still there were Tartarian flashes of the fire that had ignited the world stages.

Four years later, he would be carried once again. This time out onto the stage of The Palais Garnier in Paris to receive rapturous applause on the opening of his sumptuous production of La Bayadere and to receive France’s highest cultural honor, Commander of the Order of Arts and Letters.  This was his final curtain call. 

Every young man in ballet for future generations will be indebted to the mark that Rudolf Nureyev made on the art form. He has shaped the way we will craft our art forever.

'Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious instant of joy and empowerment.'
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Daniel Warner (1955 – 1993)
Story & Recording by Mark S. King

It wasn’t easy keeping my composure when I interviewed for my first job for an AIDS agency in 1987. Sitting across from me was Daniel P. Warner, the founder of the first AIDS organization in Los Angeles, LA Shanti. Daniel was achingly beautiful. He had brown eyes as big as serving platters and muscles that fought the confines of the safe sex t-shirt he was wearing.

I’m Mark S. King, a longtime HIV survivor.

At 26 years old, with my red hair and freckles that had not yet faded, I wasn’t used to having conversations with the kind of gorgeous man you might spy across a gay bar and wonder plaintively what it might be like to have him as a friend. But Daniel did his best to put me at ease. He hired me as his assistant on the spot, and then spent the next few years teaching me the true meaning of community service.

As time went on, Shanti grew enormously but Daniel’s health faltered. He eventually made the decision to move to San Francisco to retire, but we all knew what that really meant. I was resigned to never see him again.

In 1993, Shanti hosted our biggest, most star-studded fundraiser we had ever produced. It was a tribute to the recently departed entertainer Peter Allen, lost to AIDS, and the magnitude of celebrities who came to perform or pay their respects was like nothing I have ever seen. By that time, I had become our director of public relations, and it was my job to corral the stars into the media room for interviews.

Celebrities like Lily Tomlin, Barry Manilow, Lypsinka, Ann-Margret, Bruce Vilanch, and AIDS icon Michael Callen were making their way through the gauntlet of cameras to the crowded media room. And then one of my volunteers approached me with a look of shock and excitement on his face. He pulled me from the doorway.

“I didn’t know he was going to be here,” he said with wide eyes. “I mean –“

“Who?” I asked. Oh my God. Tom Hanks? Richard Gere?

“He’s with Miss America, Mark,” he said. “They’re right behind me.”

We both turned as the couple rounded the corner of the hallway. They entered the light of the media room and I barely kept a gasp from escaping.

Beautiful Leanza Cornett, who had been crowned Miss America, in part, by being the first winner to have HIV prevention as her platform, had a very small man at her side. His head bore the inflated effects of chemotherapy, which had apparently done little to stem the lesions that were horribly visible across his face, his neck, his hands. His eyes were swollen nearly shut. In defiance of all this, his lips were parted in a pearly, shining smile that matched the one worn by his gorgeous escort.

I stepped into the media room, wanting to collect myself, to wipe the look of pity off my face. I swallowed hard and stepped into the doorway to announce them to the press.

Daniel Warner Leanza Cornett 93 Karen Ocamb“Ladies and gentlemen,” I said. “Miss America 1993 Leanza Cornett, escorted by Mr. Daniel Warner, co-founder of the Los Angeles Shanti Foundation.”

The couple walked into the bright light and several flashes went off at once. And then the condition of Miss America’s companion dawned on the camera crews. A few flashes continued, slowly, like a strobe light, and across the room a few of the photographers lifted their eyes from their equipment to be sure their lenses had not deceived them.

Daniel looked to me with a graceful smile, and it became a full, sunny grin as he looked to the beauty queen beside him and put his arm around her. She pulled him closer to her. Their faces sparkled and beamed – glorious, joyful, defiant – in the blazing light of the room.

That man, I thought to myself, that brave, incredible man is the biggest star I have ever seen.

And then the pace of the flashes began to grow as the photographers realized they were witnessing something profound. The couple walked the path through the room and toward the other door.

“Just one more, Mr. Warner?” one suddenly called out.

“Miss America! Just another?”

The room became a cacophony of fluttering lenses and calls to look this way and that, all of it powered by two incandescent smiles.

Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious instant of joy and empowerment.

“Boss,” I said to him as they exited the room, “I didn’t know you would be here. It’s just… so great.”

He winked at me.

“I’ll be around,” he said. “I brought my whole family with me tonight. I need to get to the party and show off my new girlfriend!”

The three of us laughed, and then I watched Daniel and Miss America, arm in arm, disappear down the hall and into the reception.

Only months later, I received a phone call.

“Mark, this is Daniel,” said a weakened voice. “Monday is my birthday, and I thought that might be a good day to leave.”

Daniel had always been fiercely supportive of the right of the terminally ill to die with dignity and on their own terms. We shared some of our favorite memories of our days at Shanti, and I was able to thank him for his faith in me and setting into motion a lifetime of work devoted to those of us living with HIV.

Daniel P. Warner, as promised, died on his birthday on Monday, June 14, 1993. He was 38 years old.

* * * * *

This story is an edited version of the essay “The Night Miss America Met the Biggest Star in the World,” which Mark S. King published in March 2015 on his website, My Fabulous Disease.  Photo credit: Leanza Cornett and Daniel Warner by Karen Ocamb.

'(Glenn) Burke, who played for the Dodgers and Athletics, was the first and only MLB player to come out as gay during his career and the first to acknowledge it publicly.'
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Glenn Burke, 1952-1995
Read by Sterling K. Brown
Story by The AIDS Memorial and Irwin M. Rappaport

Glenn Burke (November 16, 1952 – May 30, 1995) was a Major League Baseball player who died of AIDS in San Leandro, California. He was 42 years old.

Burke, who played for the Los Angeles Dodgers and Oakland Athletics, was the first and only Major League player to come out as gay to teammates and owners during his career and the first to acknowledge his sexuality publicly.

In 1978, having been open about his homosexuality with his Dodgers teammates and management, Burke was traded to the A’s for the veteran Bill North.

Al Campanis, the Dodgers’ vice president, even offered him bonus money if he married.  “I guess you mean to a woman?” Burke replied.

Burke had a strained relationship with Dodgers manager Tommy Lasorda, allegedly because Lasorda’s son, Tom Lasorda Jr., was gay and became friendly with Burke.  Lasorda Jr. died of AIDS in 1991.

Although Burke started regularly in the outfield for the A’s, a pinched nerve kept him off the field. Refusing to take cortisone shots, he quit the team. However, he returned the next spring.

Former Burke teammate Claudell Washington has said that when A’s manager Billy Martin introduced the new players to the team, Martin said, ‘Oh, by the way, this is Glenn Burke and he’s a faggot.”

A knee injury led Burke to the minor leagues. Living as a gay man, he believed that his dream of starring in the major leagues was unlikely, so he walked away. In The New York Times, Burke was quoted saying, “Prejudice drove me out of baseball sooner than I should have. But I wasn’t changing.” 

In his autobiography Burke said, “Prejudice just won out.”

Burke would later star in gay baseball and softball leagues and won medals at the Gay Games. In 1987, he was hit by a car, leading to a downward spiral of drugs, homelessness and crime. In 1991, he pleaded guilty to theft and possession of a controlled substance and served time in prison. By 1994, he had discovered that he was HIV positive.

Burke’s sister Lutha, knowing he would die soon, searched for him on the streets of San Francisco. After finding her brother, she brought him home to Oakland to care for him in his final days.  In December 2020, 25 years after his death, Burke was honored with the opening of the Glenn Burke Wellness Clinic at the Oakland LGBTQ Community Center.

'His leadership served as a beacon of light to those of us lost in the sea of dying faces we could not save. Bernard took up a fight of which many other men shied away.'
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Rev. Bernárd Lynch: A Priest on Trial
Story & Recording by Cosgrove Norstadt
Photo © Life Through a Lens Photography

With so many tributes to loved ones who fell victim to HIV and AIDS, I want to pay tribute to one man who has devoted his life to caring for those with HIV and AIDS.  This one person has made such a positive impact on the LGBTQIA community and has literally ministered to thousands of men who were alone and lost. This man is Reverend Bernárd Lynch.

During the AIDS crisis of the 1980s and ‘90s, Bernárd was a tireless voice in the New York City community and traversed the difficult road of illness and death.  His leadership served as a beacon of light to those of us lost in the sea of dying faces we could not save.  Bernárd took up a fight of which many other men shied away. This man used every ounce of his being to provide care to those who died and to those of us living and blindsided by AIDS.  Bernárd’s faith in God never wavered.

Bernárd is an out and proud Roman Catholic priest who has marched in the Gay Pride parades of New York and London for the past 30 years.  He has touched the hearts of gay men and lesbian women from the shores of the United States to England to his homeland of Ireland.  Few men living can be called icons, but I certainly would call Bernárd an icon.

Bernárd’s list of accomplishments is long and varied.  He has worked for the betterment of the LGBT community worldwide.

Father Lynch first came to notice in New York City in 1982 when he formed the first AIDS ministry in New York City with the Catholic group Dignity.  It was this same year that he was drafted to work with the then-New York City Mayor Koch’s Task Force on AIDS.

In 1984, Father Lynch publicly backed Executive Order 50 in New York, which forbade discrimination from employers who did business with the city or received business funding.  At the height of the AIDS pandemic in 1986, he used his voice to publicly speak up against Cardinal O’Connor in New York City Council chambers for Intro 2, that guaranteed lesbian and gay New Yorkers the right to work and housing without prejudice against their sexual orientation.

Accusations of sexual abuse were lodged against Rev. Lynch in a criminal case in 1989, in which
he was found not guilty and acquitted.  Some, including Rev. Lynch, believe that the prosecution
was part of a smear campaign against him by Cardinal O’Connor and his allies in the church and
government.  A 2019 civil lawsuit against the Catholic Archdiocese of New York, in which Rev.
Lynch was accused of sexual abuse, was dismissed for lack of evidence.

His work related to HIV and AIDS and his persecution in New York were profiled by Channel 4 in
three documentaries: AIDS: A Priest’s Testament, Soul Survivor, and Priest on Trial.  He
received the AIDS National Interfaith Network Award for Outstanding Contribution to HIV and AIDS
Ministries in 1990.  In 1992, Father Lynch was the first priest of any denomination to march in
London’s LGBT parade dressed as a priest.  In 1993, he founded a support group for priests who
are gay.

His autobiography, A Priest on Trial, was published in 1993.  In 1996, the Sisters of Perpetual Indulgence canonized Father Lynch outside Westminster Cathedral in London.  In 2006, Father Lynch became the first legally married and legally valid priest in the world to have a civil partnership with his partner and husband, Billy Desmond.

In 1986, he received the Magnus Hirschfeld Award for outstanding services to the cause of Irish LGBT freedom.  Father Lynch was welcomed in 1995 to the Palace of the President of Ireland by her Excellency President Mary Robinson.

Never in my life have I met, or been privileged to know, a man who represents the LGBT community so well.

'He tried to live his life as normally as he could. He even went out to Fire Island, but when his skinny, KS-purpled body entered the pool, everyone else got out. My heart broke again.'
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Lawrence Baker Wilkins, 1962 -1994
Story & Recording by Richard Phibbs

Lawrence Baker Wilkins, born November 10, 1962, died July 12, 1994

I have wanted to write this for years, but remembering brings back so much pain that it often seems unbearable. I must do this, though, for my beloved friends who endured so much physical and emotional suffering.  Baker Wilkins was my best pal from our 20s into our 30s. He became my brother. We were both new to New York, curious and excited to be away from our small hometowns.

I was terrified of HIV and its mystery. This was New York City in the early 90’s, and it was almost impossible not to equate sex and intimacy with a dark horrible death. Baker was not full of fear the way I was, and that worried me.

We met for lunch one day, and he revealed to me he had tested positive. We held each other and wept. To us, the diagnosis meant that within three to six months, he’d likely be gone. I was devastated, but held myself together for him and hoped. From there it went downhill.

A red spot showed up on his nose. I said, let’s go to the makeup counter and get a cover-up. The woman at the counter sold us a concealer and told Baker to stay out of the sun. She had no idea the spot was Kaposi’s Sarcoma. The cover-up worked for a week until the KS began to take over Baker’s body. He declined rapidly. My most handsome friend was now covered in KS lesions and had wasting syndrome.

He had to have a shunt put in his chest as his veins could no longer stand up to the IV medications. He went home to North Carolina to see his family, and the local massage therapist refused to touch him.
My heart broke for my beloved friend. His courage was remarkable and he wanted to live, so with the help of his longtime partner Rolf Iversen, we investigated everything.

Shark cartilage was said to have healing properties. We tried that. Urine therapy — drinking one’s own urine — was said to stimulate the immune system. He tried that. He tried to live his life as normally as he could. He even went out to Fire Island, but when his skinny, KS-purpled body entered the pool, everyone else got out. My heart broke again.

The next phase came when they had to amputate his foot because the KS had spread. In the hospital,
I held his hand as the excruciating “phantom pains” took over his body.

Baker died. My best friend and my brother was gone at 32. He was a remarkable man.

Selling art was his passion; collecting art was his dream. He was kind to everyone. He was so handsome that everyone wanted to talk to him, and he would spend time with each person that did.  Most of them were strangers and he would make them feel heard and important.

After Baker died, Rolf died too, then Bill, then John, then Jose, then 12 other friends. Then my boss, my dentist, and then my doctor. All dead.

I was overwhelmed with sadness, then guilt that I was still alive. Depression set in. I got myself to a therapist and onto an antidepressant. I knew that, as sad as I felt, the gift of life was mine. Seeing Baker fight so hard for his life was a reminder that I had to fight for mine.

Then came a medical miracle. If Baker could only have held on for six more months, he could have received antiretroviral treatment and still be with us. At the time I didn’t believe they would find something. I just couldn’t believe it.  I think about Baker everyday. I think about Rolf and all the rest. Sometimes I think I still have PTSD from all the losses.

Sometimes I still equate sex with death, though I remind myself this is a different time. I still weep when I walk by the new condominiums that have gone up where St. Vincent’s stood. I look up and remember those cinder block cells of rooms and the hallways packed with the gurneys of young men with skeletal bodies and KS lesions. I walk by the nearby New York City AIDS Memorial hoping to feel something. I don’t, except a sadness that the names one sees on other war monuments aren’t displayed here, the names of the lost.

Before I go to sleep and when I wake up, I see this photograph of Baker, and somehow this comforts me.

I love you, my dear brother. You fought hard and with such dignity. You were so kind and sweet to everyone. You were brave until the end.  I am so sorry the world was not kinder to you.

"I have taken chances that have almost killed me, and I will keep on taking them.  I have nothing to lose.”
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Ron Woodroof, 1950-1992
Recording by Matthew McConaughey
Story by Irwin M. Rappaport
Photo by The Dallas Morning News

Ron Woodroof was an unlikely hero, but he rose to the occasion and became a lifeline for many people with AIDS in the Dallas area. Ron created the Dallas Buyers Club in 1988 to get HIV and AIDS medication to those in need who couldn’t legally get it from doctors and pharmacies.

I’m Matthew McConaughey. I had the privilege of portraying Ron in the 2013 movie Dallas Buyers Club, for which I was honored with the Academy Award for Best Actor.

Ron, a feisty, foul-mouthed electrician who lived in Oak Lawn, Texas, tested positive for HIV in the mid-80s and was given only a few months to live.  Soon after, his third marriage ended in divorce. When the FDA-approved drug AZT failed to help his condition and caused significant side effects, Ron researched and bought drugs from outside the U.S. that were not approved by the U.S. government. They helped lessen his symptoms and prolong his life, but the FDA wouldn’t allow Americans to bring more than a three-months supply of unapproved drugs into the U.S., and clearly many people didn’t have the money to travel abroad to buy medicine.

With the help of his doctor and a fellow patient, he began importing, or obtaining from underground chemists in the U.S., different drugs, nutritional supplements and treatments through The Dallas Buyers Club for use by others suffering from HIV and AIDS.  Eventually, the club imported over 100 different treatments. Clubs would often test samples of new drugs at a friendly laboratory to make sure they had the right quality and potency.

According to a Dallas Morning News article in 1992, Ron, who often dressed as a priest or a doctor in a white lab coat, made over 300 trips across the U.S./Mexico border, smuggling as many as half a million pills in the trunk of his Lincoln Continental, tricked out with heavy duty air shocks so that the car wouldn’t sag with all the extra weight.  Ron and others who worked at or bought drugs from the buyers’ club risked arrest and death by importing and taking unapproved medications, but when your disease is a death sentence, is it really such a big risk?

As Ron put it, “Dammit … I don’t see how anything can be more toxic than HIV itself.  I have taken chances that have almost killed me and I will keep on taking them.  I have nothing to lose.”

Many buyers’ club operators and customers accused the big pharma companies and their FDA regulators of conspiring to keep drug prices high and to keep new competing drugs out of the hands of patients.  Certainly, the slow pace of FDA drug approval was no help to terminally ill people on death’s doorstep.

Ron took an experimental drug called peptide T, which was used to treat AIDS-related dementia, but when the U.S. government intervened and stopped his supplier in Denmark from shipping out the drug, Ron sued the Food & Drug Administration.

“I have no choice with peptide T,” Ron said. “It is the only line I have to staying alive.  When I stop it, I start dragging my leg.  I urinate on myself. I can’t speak.  I slobber all over the damn place.”

A judge ruled against Ron, saying that although there was no Constitutional right to import unapproved drugs, he personally thought that terminally ill people should be able to buy them.  Ron managed to strike a deal that allowed him to get the drug and report his results to the FDA.

Ron died in 1992, six years after his HIV diagnosis.

As Ron said in a documentary released that year, “Let me try anything I can get my hands on. Because if it kills me, at least I died trying.”

'Sullivan was the first transgender man to be publicly known to identify as gay. His activism is considered to be one of the primary reasons for our current understanding of sexual orientation and gender identity as separate, unrelated concepts.'
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Lou Graydon Sullivan, 1951-1991
Recording by Rizi Timane
Story by The AIDS Memorial

Lou Graydon Sullivan (June 16, 1951 – March 2, 1991) was an author and activist who became the first transman to die of AIDS. He was 39 years old.

Sullivan was the first transgender man to be publicly known to identify as gay. His activism is considered to be one of the primary reasons for our current understanding of sexual orientation and gender identity as separate, unrelated concepts.

In 1986, Sullivan had reconstruction surgery but was diagnosed with HIV afterwards and informed that he had 10 months to live. It is speculated that he contacted HIV in 1980 just after his chest surgery.

He wrote, “I took a certain pleasure in informing the gender clinic that even though their program told me I could not live as a gay man, it looks like I’m going to die like one.”

In 1973, Sullivan grew up in Milwaukee, born into a Catholic family, and identified as a “female transvestite.” By 1975, he identified as a “FTM transsexual.” Later that same year, he relocated to San Francisco where began working as a woman but cross-dressed as a man.

Sullivan founded female-to-male (FTM) International, one of the first organizations specifically for FTM individuals, helping them obtain peer-support, counselling, endocrinological services and reconstructive surgery outside of gender dysphoria clinics.

Although Sullivan lived as an out gay man, he was repeatedly denied sex reassignment surgery because of his sexual orientation and the view held by the medical establishment that transgender people should adopt “stereotypical heterosexual opposite-sex gender roles.”

Sullivan campaigned to remove homosexuality from the list of conditions that served as a reason to withhold SRS from prospective patients. In 1979, he was finally able to find doctors and therapists who would accept his sexuality, began taking testosterone and underwent a double mastectomy.