Laurie McBride, a life-long LGBTQ activist and former Assistant Secretary of State for California, spoke at the West Hollywood’s World AIDS Day ceremony at the City Council Chambers on Saturday, recalling the history of the AIDS epidemic and the hard work of gay men and their lesbian and other supporters to press the government and the pharmaceutical industry to act. This is her speech:
It’s important to talk tonight, on World AIDS Day, about how we fought… how we dug in and how each of us found our place on the front lines… how the epidemic changed us, and how we changed the world…
To understand what was involved you need to see life as it was then.
The first CDC reports of this new, unknown disease came in 1982. Our community had begun to recognize itself in the 60s with fledgling organizations the first ever gay community centers. The first center came in San Francisco in 1966, and then in Los Angeles 1969, which opened just before the Stonewall Riots in NYC. But the real explosion of organizing came in the 70s…
All kinds of groups formed; where once there had only been the Court, the bars, and the sports leagues… now religious, social, and professional groups were springing up… including some dedicated to Advocacy like Lambda Legal, MECLA (Municipal Elections Committee of Los Angeles), and the Stonewall Democratic Clubs.
Most politicians didn’t want our money or our endorsements, but we were beginning to gain some traction in politics… California’s “consenting adults law” passed in 1975 thanks to Willie Brown. Harvey Milk was elected as a Supervisor in San Francisco in 1978.
But these initial gains made traditional conservatives nervous. Just after the consenting adults law was passed, marriage was suddenly re-defined as “between one man and one woman” in California. Just 11 months after his election, Harvey Milk was assassinated.
Even in the so-called gay meccas of New York, San Francisco and Los Angeles, an awful lot of people didn’t want to be out. Not just to family… but at work… in social situations. Far too many were still looking over their shoulder – cautious about being seen at a local bar or attending a meeting of “known” homosexuals.
As late as 1984, when I was President of the Golden Gate Business Association, the gay chamber of commerce was still holding its meetings in major downtown hotels. Why? So members could enter anonymously through any number of doors to the hotel.
It was into this atmosphere that HIV/AIDS dropped like a bomb. A time of promise and discovery soon became a time of fear and dread.
First came the rumors of people getting sick and dying. Then the virus was like a plague stalking the neighborhoods, the bars, the bath houses. In the early years we didn’t know what it was… we didn’t know what caused it… we didn’t know how it was transmitted… we didn’t have a test for it let alone a cure.
You knew you had it, though… you knew you were going to get sick and probably die when the purple lesions showed up on your arms, your face, your body… or your “cold” turned into the coughing fits of pneumocystis… or you got a case of thrush in your mouth.
We were dealing with our own fear… and heaped onto that was the public’s fear… Gay men, with and without signs of disease, were being turned out of their homes, fired from their jobs… Shunned in public and private.
Unlike the legionnaire’s disease outbreak just a few years before, which infected 182 veterans, there was no battalion of doctors and scientists from the state or federal governments. No sense of national emergency. And when leaders did speak up it was more likely to be about “god’s punishment”. We were clearly on our own.
Everything was up to us, so we did everything.
There was little coverage in the national or local press. It was mostly wrong or just rumor feeding public prejudice and sometimes hysteria. We had to educate the public and the media as well as ourselves.
APLA’s first volunteers operated a hotline out of a closet in the Gay and Lesbian Community Center on a single phone. A land line phone, attached to a wall.
And even though the CDC defined it as AIDS: Acquired Immune Deficiency Syndrome as early as 1982, the national media and the national imagination saw it as GRID, Gay Related Immune Disease… the gay disease… the gay plague.
A young lesbian named Holly Smith started as a volunteer media person with the newly formed San Francisco AIDS Foundation. She got fed up with hearing about GRID all the time and decided to organize an outreach effort to every print and television and major radio outlet in the country… teaching each and every one to use the term AIDS instead of GRID… She gathered every scrap of known information, created fact sheets… became a one-woman media warrior… over a two-week period we literally watched the coverage not only increase, but become more accurate… In that two weeks we learned that media relations was as important as finding the cause, and someday a cure…
There were few doctors or nurses who wanted to treat us, or even touch us. So we formed our own networks of care providers. We created AIDS wards in hospitals; staffed mostly by gay men and lesbians… but not all.
One such hero was a 30 year old straight woman, who called herself Rita Rockett. She was an AIDS angel who visited San Francisco Ward 5B, either tap dancing or roller skating her way through, bringing brunch and snacks and birthday presents… flowers and laughter…
We did everything and we did it with flair. We nurtured the spirit as well as the body… created organizations to help take care of people, their pets… provide food and comfort… everything from pajamas and toiletries to late night suppers and serenades outside bedroom windows.
In addition to combatting ignorance about the disease within our community and without, we desperately needed to put a human face on our suffering… four gay men with AIDS stepped forward to do just that. Bobbi Campbell, Bobby Reynolds, Dan Turner, and Mark Feldman decided to put together a Candlelight March and Vigil, set for May 2nd, 1983 in the Castro. They organized it using flyers and posters – no internet then, no social media. But phone trees. We were really good at phone trees by then. They also wanted an event that reached beyond San Francisco, so they reached out to Larry Kramer in New York and Matt Redman, a co-founder of APLA here.
Their goal was simple: Honor the dead. Support the living. Humanize the statistics. Challenge a do-nothing homophobic congress. At the San Francisco event only People Living with AIDS were allowed to carry the banner leading the March, a banner that said FIGHTING FOR OUR LIVES… and only People with AIDS were allowed to speak that night.
That single event turned into the yearly Candlelight Vigil, ultimately held in 400 cities around the globe… before turning into the WORLD AIDS DAY, sponsored by the World Health Organization….
Traditional medicine didn’t know what to do with us… and often didn’t know as much about the disease as we did. Most gay men I knew back then were becoming experts. These once B and C students were now subscribing to medical journals, reading medical protocols and medical research. We couldn’t afford to be passive about our care. We were changing the way doctors and patients work together.
Once the virus was identified, pharmaceutical companies started researching possible treatments. So we also demanded information about their clinical trials. Martin Delaney knew that getting into a trial might be the only chance to survive. He started a computer bulletin board about where trials were being held, and how to get in. But control groups in the trials don’t get the meds, and back then the trial wasn’t over until the patients died. So people signed up for as many trials as they could, hoping that at least one of the medications they were taking might help… might save them. Researchers of course complained that this made any results worthless. They wouldn’t know what was working… Martin argued long and hard that if you want people to follow a single protocol you had to give them hope. They had to know they would get the drug as soon as it started proving helpful. Martin led the way in changing the protocols for testing new and experimental drugs forever.
On the political front we had been fighting battles as well. We beat statewide initiatives to quarantine people with AIDS here in California… TWICE. Out of those organizing efforts came the The LIFE AIDS Lobby, the Lobby for Individual Freedom and Equality. The heads of about 80 organizations formed the board, representing the full spectrum of political action in the gay community from ACT UP and PEOPLE LIVING WITH AIDS on the left, to Log Cabin on the right. Bob Craig of Frontiers wrote the first check so staff could be hired in Sacramento. The Board met three times a year, forming a community clearinghouse for every piece of legislation that might impact the AIDS community, or the queer community, which usually numbered over 100.
Diverse as we were, we found ways to work together… even when we disagreed… Good Cop Bad Cop… and ACT UP was very effective as Bad Cop…
Because traditional medicine didn’t want to spend money on us, AIDS became the first disease where treatment and research dollars were allocated by LEGISLATION. And in lobbying, we learned once again that we had to do everything.
We had to have the facts and figures right… we had to marshal the cards and letters and phone calls… we lobbied the legislators… we lobbied the people the legislators listened to… we talked to the editorial boards… religious and civic leaders… we brought in our parents, our colleagues… our friends, even our bosses. We brought in great leaders, like a young John Duran… and our own experts in the law like Jenny Pizer and Jon Davidson.
The Lobby defeated most of the bad bills and passed most of the good ones. Usually with just enough votes. We ran around the Capitol counting votes… which occasionally meant over the top action like plucking a reluctant legislator out of a bar and hustling him back to chambers. Sometimes only pressure from Speaker Willie Brown or Senate Pro Tem David Roberti got us through… They would actually send their deputies to stand in the back of the room and make sure the votes lined up.
To sum it up, every way that HIV/AIDS pushed us, we pushed back. We changed the way people with a disease organize, we changed the very nature of the doctor-patient relationship, we changed the way experimental drugs are tested and handed out. We fought back a host of punitive legislation… and we fought for treatment and research funding. We fought discrimination and won our rights.
We are proven agents of change. That’s a hell of a legacy, not just to honor, but to live up to.
The accomplishments of yesterday are under attack. The tax plan being pushed today is a stealth attack on our health care tomorrow… AND our social safety nets.
Trump is on the verge of slashing AIDS treatment funding for other nations by $800 million dollars. Since treatment equals prevention, that means an explosion of new infections and deaths worldwide.
Make no mistae about it, Trump and the Republican congress doesn’t care about taking away your healthcare, your rights, the rights of women, people of color, immigrants or refugees. WE ARE ALL ONE COMMUNITY NOW, and are all under attack.
Living up to yesterday means standing up today. It means using all our gifts, all our strengths, all our energy to combat the blight of bigotry, ignorance and greed infecting our country. And once again FIGHTING FOR OUR LIVES.