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What I Know and Don’t Know About the History of the AIDS Epidemic

By Megan Graham

IMAGE CREDIT: Act Up Demo protesting AIDS epidemic, New York, June 1994 CNN

Here is everything I was taught about HIV/AIDS in my high school biology class: HIV is an RNA virus that can change your DNA. This is an important example to remember for our genetics test next Friday.

Here is everything I was taught about HIV/AIDS in my high school health class: HIV is a sexually transmitted disease. When you put a penis in a vagina, it is important to use condoms to avoid unsavory results, such as this or pregnancy. (The word “gay” did not seem to come up.)

Here is everything I was taught about HIV/AIDS during my four years of advanced high school history classes: Nothing.

Here is everything my mother taught me about HIV/AIDS: As a hospice volunteer in Berkeley in the 1990s, she saw a lot of AIDS patients. One of her favorites was a prominent professor at UC Berkeley whose name she remembers but will not tell me. He was in the closet, so almost no one knew he was dying. My mother tells me that he was so cold and distant that she thought he did not want her there, but when she gave her shift to someone else, he called her home phone and demanded that she come back. One night, when they were watching television together, a presidential debate came on the news. When George Bush spoke, the professor threw his popcorn at the TV.

It was a big deal, for my mother and many others, when Princess Diana started visiting AIDS patients. Seeing a mother bring the future king to AIDS wards helped destigmatize the disease and show that no one is too important to care about it. It was particularly impactful, I learned, that Princess Diana held hands with and hugged the patients. In a world where many people were afraid to be in the same room as AIDS patients, let alone touch them, it was an important political statement for a beloved public figure to be in such close contact with them.

Here is everything else I know about the history of the AIDS epidemic, taught through college classes, movies, books, and the occasional podcast: AIDS, or it was first called, Gay-Related Immune Deficiency, was first reported in the New York Times with the headline, “Rare Cancer Seen in 41 Homosexuals.” The resulting epidemic killed off almost an entire generation of young, gay men, and went largely unnoticed by the public for half a decade. The epidemic was concentrated in New York, but it spread to cities across the United States and the world.

In addition to gay men, the AIDS epidemic devastated communities of trans people of color, who were even less noticed by the public than gay men. Amid the vibrant ball culture were fear and grief. AIDS patients, especially trans women of color, faced discrimination and abuse within the medical field. AIDS became a justification for discrimination, and it added more social taboo to gay sex: sex now carried an added element of danger. The gay liberation movement in the seventies had fought to destigmatize gay sex, and had achieved some success. AIDS eroded it. Many patients died alone because they were too ashamed to tell anyone that they were sick.

Gay and trans people bore most of the blame for AIDS, but conspiracy theories and blame spread around, fueled by a lack of understanding about the HIV virus. People also blamed Haitians and prostitutes especially. When it became clear that the virus could be transmitted through shared needles, they blamed drug users. AIDS is the reason gay men still cannot give blood. AIDS became a convenient reason to cast out members of society that were already marginalized, to discriminate against people most hurt by the Moral Majority and trickle down economics. In all the blame passing around, it seemed to take a while before people got around to blaming the government.

To understand the lack of government response around AIDS, I have learned, one has to understand the rise of the Moral Majority. If the seventies were a powerful force driving the country towards more liberal stances around gender and sexuality, the eighties were an equally powerful counterforce. While people were dying by the thousands, far-right religious fanatics such as Anita Bryant, Jerry Falwell, and Ronald Reagan were preaching homophobia and hate to the country. This “Moral Majority” encouraged people to think of gayness as a disease and a sin. According to that logic, AIDS could be seen as either a physical form of the mental disease, or, more simply, God’s punishment. In part because of this, hate crimes rose significantly during the crisis. In addition to destroying the developing social safety net in the name of “trickle-down economics,” Reagan ignored the AIDS crisis, did not allocate funding to develop a cure or even understand the disease, and preached family values. In 1982, a member of the press asked Larry Speakes, Ronald Reagan’s press secretary, about the disease. Speakes responded by joking. The word “AIDS” did not come out of Ronald Reagan’s mouth until 1985. Homophobia at the federal level killed thousands of people.

Despite the government’s determination to pretend that AIDS did not exist, artists and activists brought the epidemic into the public consciousness. Larry Kramer’s The Normal Heart forced mainstream theatergoers to reckon with the ongoing epidemic and encouraged them to action. Six years later, Tony Kushner’s Angels in America showed the life of people dying from AIDS while exposing the hypocrisy of some of the founders of the modern conservative movement. Paris Is Burning documented the lives of drag queens and trans women, some of whom were sex workers and some of whom had AIDS. By the mid-1990s, mainstream productions, such as the musical Rent and the film Philadelphia, provided flawed but important depictions of HIV and AIDS. In this way, these pieces of art continued and bolstered Larry Kramer’s project of bringing AIDS into mainstream cultural productions. It seems that the more ACT UP made AIDS impossible to ignore, the more people produced art about it, and the more people were made to care about it.

ACT UP, through sustained, direct action, forced progress even in the face of an unwilling government and public. ACT UP self-consciously connected AIDS to the Holocaust to inspire action. The pink triangle on the famous “silence = death” posters is the same symbol that the Nazis used to distinguish homosexuals in concentration camps. Signs at protests included messages like “if I die of AIDS, put my body on the steps of the FDA.” Activists today try to emulate the provocative and effective tactics of ACT UP, and signs at the March For Our Lives read “if I die of a school shooting, put my body on the steps of Congress.” ACT UP did not just fight homophobia and medical discrimination. It also updated the blueprint for forcing the government to take action.

Here is what I know about HIV/AIDS today: It is still here. In some countries, there are still thousands of people dying from it. There are currently drugs (as advertised on the back of Broadway playbills) that can prevent AIDS and make HIV a chronic condition rather than a death sentence. While the drugs are more widely accessible today than ever before, pharmaceutical companies still prioritize their profit margins when it comes to drug distribution. It costs less than a dollar per pill to manufacture the medication, yet somehow they never seem to reach people in Africa or even the most vulnerable people in the United States. But the existence of the drugs, nevertheless, is progress.

I also know that I struggled to fill four pages with information about HIV/AIDS. That if I were asked to write about 9/11, I could easily fill ten. That in a public school in liberal Massachusetts, the history of AIDS was not a part of the curriculum. That the lack of education around this means young people don’t know enough about the crisis, and that lack of knowledge can be deadly.

About the Author

Megan grew up in the suburbs of Massachusetts, where she came out as queer before college. She loves running, reading, and The L Word.

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