Stories of Leadership

'I miss him all the time. He was a father figure to me and I wish he was around today, laughing his infectious laugh and giving me a shoulder to lean on.'
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Keeston Lowery, 1949-1993
Story & Recording by Shane Hensinger

Keeston Lowery was an aide to Portland, Oregon City Commissioner Mike Lindberg in the ’80s and ’90s, at a time where very few LGBT people were out and open in politics. He helped start Right to Privacy PAC, the forerunner to today’s Basic Rights Oregon, one of the earliest political action committees dedicated to fighting for equality for LGBT people.

Keeston acted as a mentor to me when I was a young guy interested in politics in the late ’80s and early ’90s. He encouraged me to be my best. He wrote the recommendation letter which got me the scholarship that helped me get to college, and he was always there with a sound piece of advice for me. He listened patiently to my boy problems and teenage drama, and never failed to calm me down after a break up — which I’m sure was pretty exhausting.

Keeston also went to bat for The City nightclub, an underage LGBT gathering place that was relentlessly persecuted by Portland’s then -homophobic political establishment and police force. He knew how important it was for LGBT kids to have a safe place where we could be ourselves.

He died in 1993 and everyone in politics attended his funeral – Governor Barbara Roberts, Mayor Vera Katz – the list went on and on.  I miss him all the time.  He was a father figure to me, and I wish he was around today, laughing his infectious laugh and giving me a shoulder to lean on.

One thing AIDS took from us was a generation of gay men with decades of collective wisdom and historic memory.  Sometimes, I think that’s the cruelest part of the epidemic — the loss of elders who could have acted as a steadying hand for our community.

Keeston would have relished that role.

'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.

'HIV is certainly character-building. It’s made me see all of the shallow things we cling to, like ego and vanity. Of course, I’d rather have a few more T-cells and a little less character.'
- Randy Shilts
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Randy Shilts, 1951–1994
Recording by Dustin Lance Black
Story by Irwin M. Rappaport

So said Randy Shilts, in his 1987 book And the Band Played On: Politics, People and the AIDS Epidemic.

The book chronicled the first five years of AIDS in the U.S., was nominated for a National Book Award and was adapted into a 1994 HBO movie starring Richard Gere, Matthew Modine and Angelica Huston.  Randy began researching the book and reporting on AIDS while working for the San Francisco Chronicle, where he was one of the first openly-gay journalists at a major U.S. newspaper and worked for 13 years.

I’m Dustin Lance Black.  Randy’s first book, The Mayor of Castro Street: the Life and Times of Harvey Milk, was critical research for my Oscar-winning screenplay for the movie Milk, in which Sean Penn played openly-gay San Francisco Supervisor Harvey Milk.  Harvey Milk was assassinated in 1978, along with Mayor George Moscone.

Randy’s reporting and positions were sometimes controversial within segments the gay community.  Some criticized his suggestion that gay bathhouses were responsible for the spread of AIDS and his opposition to outing closeted and prominent gays and lesbians.

Randy delayed getting get his own HIV test results until he had completed the writing of And the Band Played On, because he didn’t want his test result — positive or negative — to affect his objectivity as a journalist.  According to his New York Times obituary, Randy found out he was HIV positive in March 1987 on the same day he submitted the manuscript to his publisher.

In 1992, Randy contracted pneumocystis pneumonia, and later that year, suffered a collapsed lung.  In 1993, he was diagnosed with Kaposi’s sarcoma.  Although mostly confined to his home and on oxygen, he managed to attend the Los Angeles screening of the HBO film version of And the Band Played On in August 1993.

Randy’s last book was Conduct Unbecoming: Gays and Lesbians in the U.S. Military from Vietnam to the Persian Gulf.  Published in 1993, not long before the announcement of the controversial “Don’t Ask, Don’t Tell” policy by the Clinton administration, the book explored the mistreatment and weeding out of lesbians and gays in the US military, and was finished from his hospital bed.

In the spring of 1993, Randy told a New York Times reporter, “HIV is certainly character-building.  It’s made me see all of the shallow things we cling to, like ego and vanity.  Of course, I’d rather have a few more T-cells and a little less character.”

Randy Shilts died of AIDS in 1994 at the age of 42 in Guerneville, California.  He was included in the inaugural honorees of the Rainbow Honor Walk in the Castro district of San Francisco, and he was among the first 50 inducted into the National LGBTQ Wall of Honor at the national monument in New York City’s Stonewall Inn.

'Early polling showed a potential big win for Prop 64 – largely due to the fear and misinformation out there ... But our community rallied, and in four short months, we won the day.'
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No on 64
Story & Recording by Torie Osborn

I’m Torie Osborn, telling the story of the “No on 64” campaign against the heinous 1986 proposition to quarantine people with AIDS, put on the California ballot by right-winger Lyndon LaRouche.

Remember, that was during the dark time when AIDS was still new, all the urban gay and bi-men were at risk, there was zero treatment, and the general population still thought it was transmitted in the air, if not by mosquitos.  Early polling showed a potential big win for Prop 64 – largely due to the fear and misinformation out there.  Seventy percent of the electorate was undecided.  But our community rallied, and in four short months, we won the day.

Our campaign consultant was David Mixner – the best in the biz in our world.  He’d headed up the “No on 6” campaign in 1978 against the Briggs Initiative to fire gay teachers.  I was Southern California Campaign Coordinator for “No on 64,” and Dick Pabich (R.I.P) was my counterpart up north. Co-chairs of the campaign were Harry Britt and Diane Abbitt.  So many who are now gone were key spokespeople, such as Rob Eichberg, Randy Klose, Duke Comegys, Bruce Decker, Peter Scott, Jean O’Leary.

We’d learned from Prop 6 that to win, we needed both the volunteer-driven, grassroots mobilization arm and the paid professional campaign, so “Stop LaRouche” worked alongside “No on 64” campaign — we were tightly coordinated.  It was run by Ivy Bottini, Lee Werbel, Phill Wilson, and others.

AIDS phobia was so widespread that at the start of the campaign, no mainstream liberal groups – except the docs and nurses — were with us, except the Southern California ACLU chapter, and a few random Hollywood straight types, like Paul Newman. But we mobilized like crazy.

In four short months, we raised over $2 million, 90% of which came from our own community, and mounted a professional, bi-partisan campaign that ended up winning 71% of the vote in November.

We had hundreds of House Parties and a thousand volunteers who spoke at every civic club and community group and Dem Club around the state. By the last month, every single slate card, every labor union, everyone was with us.  And every voter in California – including every Republican! – received a strong “NO on 64” mailer.

That 71% victory belonged to our entire LGBTQ+ community that rose up en masse to forge a victory out of the agony of AIDS, and, in the course of it, firmly established ourselves, alongside medical experts, as trusted spokespeople on the issue of HIV and AIDS.

'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.”

'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.

'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.”

'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 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.”

'We would adjourn these meetings in memory of those that we had lost since the last time we met. And sometimes the adjournments would go for 30 minutes or more, as people openly wept about comrades who had fallen and people that had shared that common table with us.'
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Life AIDS Lobby
Story and Recording by John Duran
Photo from John Duran’s personal collection
(shown from left, circa 1987: John Duran, co-chair of the Life AIDS Lobby; Dianne Feinstein, mayor of San Francisco; and Lisa Kaye from the Eleanor Roosevelt Democratic Club)

My name is John Duran, and I’m the former mayor and council member of the City of West Hollywood for 20 years, former legal counsel for ACT UP chapters here in Southern California, Clean Needles Now the needle exchange, and Medicinal Marijuana. But prior to all that work, I was statewide co-chair for the Life AIDS Lobby.

The Life AIDS Lobby was created when we defeated Lyndon LaRouche’s Proposition 64 back in 1986. And we were quite happy to beat that back 2-to-1; it would have quarantined HIV-positive people in camps, had it passed.

And once we soundly defeated Lyndon LaRouche, we thought our work was done. But within six months, the California legislature had introduced almost 200 separate pieces of legislation on HIV and AIDS, from the most progressive ideas like AIDS education in the classrooms and needle exchange, to the most oppressive and extreme draconian measures like mandatory quarantine of HIV positive people in camps — again.

So we didn’t have, you know, the luxury of dissent at that point. We were under attack.

So we ended up organizing ourselves from San Diego all the way up to the north coast of California, and put 102 organizations together at a common table. Everybody was there. All the LGBT PACs, all the Democratic clubs, all the Stonewalls and Harvey Milks and Alice B. Toklas, all the Log Cabin Republican clubs, all the chapters of ACT UP, the sober recovery community organizations, all the Pride festivals, all the LGBT publications, the California nurses, teachers, health care officers — all at a common table.

And we would come together for quarterly meetings and debate policy, but we knew that with all the confusion and fear around HIV and AIDS, we really didn’t have the luxury of being able to disagree. We had to find a common table to hash out policy and stand united. And that’s what we ended up doing.

So we would meet with the California legislative leadership, Assembly Speaker Willie Brown from San Francisco and Senate Pro Tem David Roberti from West Hollywood, and we’d say the following 102 organizations all agree on these policies.

We would adjourn these meetings in memory of those that we had lost since the last time we met. And sometimes the adjournments would go for 30 minutes or more, as people openly wept about comrades who had fallen and people that had shared that common table with us.

And it was such a somber and sullen moment at the end of every quarterly board meeting, because we all realized, no matter what our political differences or our great diversity or gender or race or anything else — it didn’t really matter, we were all in the fight for our lives, and we were there to do what was best for the common good.

I always wondered why I was, you know, such a young man, living in Laguna Beach at the time and no more than 27-28 years old, and I’m the statewide co-chair. At the time, I was HIV-negative, and it was confided in me that they selected me, because a lot of the men who were positive or had AIDS who were elder statesmen and known and tested leadership, were sick and dying.

So it really became the story of lesbian women and our straight women allies taking the reins, along with some of the younger gay men who were recently infected or still HIV-negative, that would end up coming into leadership,  because those that came before us were very, very sick.

It was quite an extraordinary period. Our first executive director was Rand Martin, who’s still up in Sacramento, and our second was the late Laurie McBride, who was just an angel on earth.  Both such incredibly dynamic leaders that really made all the difference in crafting California’s compassionate response to HIV and AIDS — which, by the way, became a model for all the other states around the nation.

I think what gives me such a warm feeling about the Life AIDS Lobby, is remembering that there was no time for differences, no time to see something different about the person sitting next to me. We had to link arms and hands and work together no matter what, because our lives were on the line.

'We draw hope from the progress of science. We are blessed with heroes willing to stand up for truth, unbowed by withering assaults. On behalf of all of us, thank you, Tony Fauci.'
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Dr. Anthony Fauci, AIDS Researcher and Champion
Recording by Peter Staley (pictured left of Dr. Fauci)
Story by Irwin Rappaport & Peter Staley
Photo provided by Peter Staley

If you’re like most Americans, you probably first learned about Dr. Anthony Fauci in connection with COVID-19 when he served on the Trump White House Coronavirus Task Force. Fauci later served as Chief Medical Officer under the Biden Administration, until he left government at the end of 2022.

His tenure working with Trump was filled with controversy with the President, other Republican politicians, and the right-wing media and its followers. This was not Tony Fauci’s first brush with controversy, however. For over three decades, Fauci was at the center of public and private battles over public health research and policy.

In 1984, Tony was at the forefront of US scientific research for HIV and AIDS medication as the new Director of the National Institute of Allergy and Infectious Diseases (NIAD).

I’m Peter Staley. I first met Tony Fauci in 1989 at the International AIDS Conference in Montreal where the AIDS activist group I was a member of, ACT UP, rushed and took control of the stage during the opening session and disrupted various scientific presentations. We demanded faster access to experimental AIDS drugs.

Fauci was familiar with ACT UP by then. He had been quietly meeting with ACT UP members for the prior two years. The AIDS epidemic was killing thousands of our friends and loved ones in America each year and infecting many thousands more. On top of facing death, fear and homophobia in the 1980s and the first half of the ‘90s, those of us with HIV or AIDS had to confront the sky-high cost of approved AIDS drugs, and the slow drug trial and approval process.

We were denied access to experimental drugs. As patients, we were excluded from advocating for ourselves during the process of researching and developing drugs. ACT UP was fed up.

We blocked New York City streets during rush hour. We seized control of the FDA building and stormed the campus of the National Institutes of Health where Fauci worked. We stopped trading on the floor of the New York Stock Exchange. We disrupted Mass at St. Patrick’s Cathedral. We covered anti-gay Senator Jesse Helms’ house with a giant inflatable condom. ACT UP co-founder Larry Kramer called Fauci a murderer in an essay in the Village Voice.

Yet as controversial and critical as we were, Dr. Fauci sat down with us, even inviting us to frequent dinners at the home of his deputy. Days after our takeover of the AIDS conference in Montreal, we met with Dr. Fauci to hammer out details of a new program that expanded public access to experimental drugs. As I was led away in handcuffs after climbing the portico at the NIAD building where I was tackled by police, Tony spotted me and asked me if I was OK.

He cared enough about us and those we spoke for to listen to us, both our criticism and our suggestions. That led to a new policy where patients affected by HIV and AIDS, and all other diseases thereafter, were given a seat at the table to advocate for themselves and those like them during the scientific research process.

He was the driving force in designing President George W. Bush’s game-changing policy called the President’s Emergency Plan for AIDS Relief (PEPFAR), which has saved over 25 million lives worldwide. Perhaps Tony’s empathy, dedication to science, and willingness to persevere in the face of relentless criticism were strengthened because, outside of public view, he cared for hundreds of AIDS patients participating in clinical trials at the NIH hospital during the 1980s and early ‘90s, and continued to do rounds there until he left government at the end of 2020.

As I wrote in a guest essay in The New York Times on Fauci’s final day in government service:

“We draw hope from the progress of science. We are blessed with heroes willing to stand up for truth, unbowed by withering assaults. On behalf of all of us, thank you, Tony Fauci.”

'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.

'As a Black trans woman who has been living with HIV for over 10 years, I just want to say it is okay to be nervous and overwhelmed. But dig deep and find that determination and tenacity to survive and thrive.'
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My HIV Story
Story and Recording by Mallery Jenna Robinson

Hi! My name is Mallery Jenna Robinson.  My pronouns are she/her/hers, I identify as an AfraCaribbean Trans woman who has been empowered in her truth for 16 years as a trans woman and over 10 years as a trans woman living with undetectable HIV. 

On May 2, 2011, I was living in Montgomery, Alabama, a junior in college and in a monogamous romantic and sexual relationship with a cisgendered male when I became violently ill and collapsed while working as a server at a local restaurant.  I was rushed to the emergency room, where a panel of tests were run including blood work.

I received a phone call from the Montgomery County Health Department on May 21, 2011 to come into the health department to receive an update regarding my recent blood work. The medical provider walked inside the door to the office where I was waiting anxiously, and informed me I was HIV positive. He then referred me to the Copeland Care Clinic, also known as The Montgomery AIDS Outreach, where I would be linked into care at the Ryan White Program to receive HIV care and management.

I was completely nervous and overwhelmed as a then 21-year-old Black trans woman who was working on my Double Bachelor’s in Biology and History, but nonetheless I was determined to not let this diagnosis deter me from living my best life. I arrived at the Copeland Care Clinic and received training on best practices to ensure I would become and remain undetectable.  I met my amazing medical provider at the time, Dr. B, and he also recognized that I had no access to hormone replacement therapy, so he also prescribed that along with my anti-retroviral medication. 

Despite my medical diagnosis, I was tenacious and determined to continue to live an amazing life and not let HIV define my existence.  I was diligent about taking my medication and, as a result, I went from lab work twice a month to lab work once every six months.

I went on to graduate with my double Bachelor’s in biology and history in May 2014.  I began teaching as a middle school science and history teacher in Duval County, Florida from August 2014 until June 2019.  I traveled to Paris, France and London, England, and finally worked up the gumption to move to Los Angeles, California.  After moving to Los Angeles, I began receiving medical care at the Los Angeles LGBT Center under Dr. V.

Since moving to Los Angeles, I have become a transgender and HIV healthcare advocate, raising awareness to promote accessibility, visibility, and equity for all trans identities.  I work to destigmatize HIV by professionally speaking about my own journey surrounding HIV as a Black trans woman.  I’m a member of the City of West Hollywood’s Transgender Advisory Board, and work as Engagement Specialist and Service Navigator for The Transgender Health Department at the LGBT Center of Long Beach up until 2021.  I now work as the Community Advisory Board coordinator for “We Can Stop STDs LA” with Coachman Moore & Associates.

I participate in outreach efforts with other community leaders and partners to ensure that trans women of color and all trans identities in our community are being tested, and getting linked to care and remaining in care.  Far too often, individuals hear the letters H-I-V and instantly think of it as a death sentence, but it is not. You can successfully live with HIV as long as you are willing to take your medicines and practice other health and wellness strategies to ensure you are maintaining an undetectable status.

As a Black trans woman who has been living with HIV for over 10 years, I just want to say it is okay to be nervous and overwhelmed.  But dig deep and find that determination and tenacity to survive and thrive, so you, too, can motivate and inspire others to stay undetectable by staying in care.  Also, if you’re negative, PrEP and PeP services are also available, along with regular HIV testing.

'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.