I was running Allegheny Women’s Center when the first reports came in. I remember sitting at my desk in1981, reading the CDC’s “Morbidity and Mortality Weekly Report,” as I did each week. And there, in the middle of stories about measles, STDs, rabies, pregnancy, and car wrecks, was a small item about a cluster of cases in San Francisco. Young, healthy men were being diagnosed with Pneumocystis carinii pneumonia and Kaposi’s sarcoma, diseases usually associated with older men with impaired immune systems. All the patients were identified as “homosexual’ in the article.“This can’t be good,” I thought.
That was the understatement of a life time. All hell broke loose. It didn’t take long for epidemiologists to determine that the epicenter of this new pandemic was the gay male community (at the time, along with Haitians and others), and then the media dubbed it the “Gay Plague.” Once that happened, the rightwing seized on it as a “gift from God,” and rightful punishment for sodomy. And gallows humor abounded, with one of the jokes in the community being, “What’s the hardest thing about having AIDS? Trying to convince your parents you’re Haitian.”But there was nothing funny about what happened. My friends started getting sick, fast – and dying, in pain and isolation. I had to stop congratulating people on weight loss, because there was always the possibility that they had AIDS. Health care providers shunned people with AIDS, refusing to them care. My friend Mary Grace Fitzgerald, a nurse, told of caring for a man dying of AIDS who started crying as she was helping him. He told her she was the first person to touch him without massive gloves, gowns, etc., since he had been diagnosed. Many funeral homes refused to bury AIDS patients, too. And no one knew exactly how anyone got AIDS (the name alone said that – AIDS stands for Acquired Immune Deficiency Syndrome, not a disease but a collection of symptoms – and no one knew how to treat it, let alone prevent it or cure it. It was an awful awful awful time.
So a despised, powerless, and often hidden community came under attack by disease and bigotry. So what did they and their allies do? In the words of the Church Ladies for Choice, “Dress up, Fight Back!” Courageous leaders like Charles Rinaldo, Monte Ho, David Lyter, and Tony Silvestre got the Pitt Men’s Study up and running, with the help of Lucky Johns, Randy Forrester, Sharon Sutton, and many others. The Pitt Men’s Study was the first safe medical haven anywhere for people who had or thought they had AIDS. Still active today, the study led the research that eventually moved AIDS from a certain death sentence to a manageable chronic disease for people with access to medical care.But we all took action politically, too. My friend Billy Hileman formed the direct action Cry Out!, and I was thrilled to be a charter member. With Randy Forrester, co-founder and head of Persad, as the most well-known political leader in the community, we pushed for both AIDs issues and civil rights on a local, state, and national level. And even though lesbians were among those least likely to contract AIDS, the lesbian community jumped in to help their brothers – joining the political fight and providing the community care and support so desperately needed.
It was hard. Bigotry and fear were rampant. We had to fight through two different Pittsburgh City Council classes to get sexual orientation added to the protected classes under the Pittsburgh Human Relations Commission. One of the leaders of that fight was my dear friend and civil rights icon Alma Speed Fox. The Reagan administration was particularly awful, refusing to even recognize the AIDS pandemic until 2005. I was at a huge demonstration in front of the White House, where we engaged in civil disobedience. When the police started to move in, they donned massive and extra thick gloves (think hazardous waste), which enraged the crowd. People muttered about fighting the police. Then suddenly a chant began, picked up by the crowd: “Your gloves don’t match your shoes. You’ll see it on the news.” Everybody vamped and laughed. Then, when the arrests occurred, the police brought in two buses – one for men and one for women. My friend, Lois Galgay Reckitt, who was handcuffed, leaned out the window and quipped, “They really don’t get it!”In 1987, when I was press secretary for NOW, the organizers of the Second National March on Washington for Lesbian and Gay Rights asked the NOW staff to provide major assistance to"The Great March." The slogan of the march was, "For love and for life, we're not going back!" We had all intended to help – after all, then NOW President Ellie Smeal was one of the leaders. But we found that so many of the people working on the march were unable to continue because they had AIDS and had damaged their precarious health through their non-stop work, that we had to jump in with both feet.
By the next march in 1993, the medical research and treatment had begun to change the dynamic, so an HIV positive diagnosis was not an automatic and ugly death sentence – at least, for those who had health insurance. Billy Hileman was one of the four national co-chairs of the march, who gave me the amazing gift of hiring me to coordinate news media coverage for the march and our issues. We re-framed the debate with that march, no longer having to defend our lives against AIDS/HIV, but adding LGBTQ rights to the civil rights agenda of the nation. And our civil rights movement continues today with marriage equality among other issues.But while AIDS is no longer a death sentence in the U.S., that cannot be said about all of our global neighbors. Poverty is now linked to HIV, particularly in Africa. Life-saving anti-viral drugs are started too late or not available. And bigotry and ignorance still prevail.
My close friends are no longer dying in huge numbers, but too many others are. So I’ll be wearing a different red ribbon pin this World AIDS Day. Mine is from the American Federation of Teachers, and it combines the red with the colors of Africa.