So many funerals, so little help: How our community faced AIDS & refused to disappear

The following is an excerpt from the new book The Fight of Our Lives: AIDS in America by David Levithan and Gabriel Duckels, available from Knopf Books for Young Readers.

The AIDS crisis in America is complex and composed of countless individual stories of grief, love, and advocacy. Its history shows the power of youth activism, how creativity and community can be vehicles for social change, and how bigotry and misinformation led to inequality in care.

The early days of the AIDS crisis saw LGBTQ+ and other marginalized communities making strides in the fight for equality. As many people in positions of power were slow to act or actively didn’t pay attention until their own communities were affected, the fight for equality turned into a fight for their lives. Grassroots efforts filled in gaps where mainstream medicine and politics failed, and over time, a cultural shift of awareness emerged, which led to more research and more treatments. And while the disease has transitioned from a death sentence to one that people can live full lives with, there are still people dying of HIV/AIDS today because they can’t access the care they need. The fight may have begun decades ago, but is not yet over.

Levithan and Duckels detail a brief history of the epidemic, touching on key moments and figures, such as Ryan White, ACT UP, Larry Kramer and Anthony Fauci, Pedro Zamora from MTV’s The Real World, and the Names Quilt. Threaded throughout are poems, essays, and other creative works, in addition to first-person interviews and narratives. The most important takeaway is that we must remember. We need to know what happened and why. Our voices are powerful, and they can make a difference.

How about we take this to the next level?

Subscribe to our newsletter for a refreshing cocktail (or mocktail) of LGBTQ+ entertainment and pop culture, served up with a side of eye-candy.
Subscribe to our Newsletter today

This is a story of what fear, ignorance, and prejudice can do.

It is also a story of what activism, compassion, and resistance can do.

It is a story defined by doom and death.

It is also defined by a profound hope for life.

Imagine ten of your friends.

Now imagine that six or seven of them have an incurable, deadly disease.

You rage against the indifferent government that won’t stop what’s killing them. You sit at their bedsides, keep vigil as they struggle, diminish, and grasp. You attend their funerals, except when their parents say you are not welcome, covering the truth with their own versions. You try to keep track of the friends and acquaintances you have lost. Eventually, there are so many, you lose count.

Death is everywhere, and there isn’t a thing you can do to stop it—except pressure the people who can do something to stop it. The federal government. Local governments. Drug companies. The general public. You want to scream at people in the supermarket to make them listen to you. You want to shake any news reporter who isn’t paying attention. You want to overpower the self- righteous bystanders who say that people like you had it coming, that you deserve to die.

It is a seemingly endless fight. And as friend after friend keeps dying, you wonder if you will be next.

You cannot do much alone. But there is strength as a community. The enemies wanted people with AIDS to give up, give in, go quietly.

They did not.

But as in any war, many died along the way.

The AIDS crisis refers to a distinct period between the early 1980s and the mid-1990s, when hundreds of thousands of people in the United States faced a deadly new disease that had no treatment and no cure. It is hard for us now to imagine the devastation, the grief, the injustice that the generations before us went through. Diagnosis as a near-certain death sentence. Being given a year, maybe two, to live. And even now, nearly thirty years since the first successful treatments were found, people still become HIV+ and people still die from AIDS-related illness. Because HIV/AIDS continues to be aided and abetted by forces of bigotry, indifference, and shame.

We are going to ask you to start here:

Imagine losing so many friends, so much of your community.

Imagine wondering why.

Imagine finding a way to fight back.

By the start of the twenty-first century, combination therapy meant that HIV no longer had to be a death sentence for people with access to health care. But by that time, almost half a million Americans had died. As we finish this book, just over a million people in the United States are living with HIV. Combination therapy means that many of these people are able to live healthy, fulfilling lives, in which being HIV+ doesn’t have to be any different from having any other chronic condition. These are the two inextricably connected pieces of HIV history: the terrible legacy of the AIDS crisis in the United States in the 1980s and 1990s and the unresolved but vastly improved circumstances for HIV+ people today.

We tell this story because it is dangerous to forget it. We tell this story because as much as it is a story of negligence and suffering, it is also a story of activism and fighting back. It’s as much about life as it is about death. It is a story of protest—on both individual and community levels. It is a story of doing everything you can to sound the alarm until those in power find the alarm more unbearable than the silence.

There are so many voices who were lost. We gather some of them here, even as we acknowledge the many who died without leaving written traces. For some, there wasn’t enough time to get their stories down in the suddenness of their dying. For others, there was a record left behind . . . but then it fell into the hands of the family members who wanted to deny how they’d lived. Insult on top of injury; invisibility on top of death. It only made the rest of us more defiant, more determined to never be erased.

We honor all those who survived. We are grateful to a number of them for talking to us so you can read their stories here in their own words. There are now generations of queer people who weren’t alive in the 1980s and 1990s, who can’t possibly remember what it was like unless we tell them. Ours has always been an oral history, often told in whispers and code. But now it can be a matter of public record, and we can bring the past back to life.

The story of HIV/AIDS in America is a complicated one, with hundreds of thousands of characters and just as many subplots. But at heart, the story is disturbingly simple: At a time when LGBTQ+ people in America were starting to make progress in our fight for equality, we were hit with a horrific disease, and many people were willing to let us die, along with so many others, whether in the United States or around the world.

At the start, HIV/AIDS had plenty of accomplices. Like bigotry. Like indifference. Like racism. And shame. AIDS did not just decimate the gay community; in America, almost half of all people with hemophilia died because of a tainted blood supply. As with so many plagues in America, poor people and people of color were disproportionately affected. Babies were born HIV+ because the virus was in their mothers’ blood. People who were addicted to intravenous drugs were especially vulnerable, as were people living or working on the street, in no small part because society saw them as marginal, dispensable.

The only reason it wasn’t worse, the only reason so many survived, was that people with AIDS and the queer community refused to roll over and die. We would not go quietly. We would not allow the government and the corporations to ignore us. With medical activism that was unprecedented in American history, people with AIDS and their allies fought back. Ultimately, far too late, treatments were found.

This is not a happy ending. There is no ending yet. There is still no cure. There are treatment and prevention options, but those treatment and prevention options cost money, creating a financial divide for medical health. And the bigotry, the indifference, the racism, the shame, and the homophobia sadly remain. As we write this, there are renewed existential threats on funding to fight HIV/AIDS, both in America and globally, from a hostile administration that seems willing to let people die in order to achieve its political aims.

This is why we are vigilant. We learned vigilance the hard way.

There are many lessons carried through these pages. At heart, there is this:

We, the generations after, must remember.

Many of us died.

Those of us who didn’t must carry on in their names.

In order to do this, we need to know what happened. And why.

Related

25 must-read books that humanize the HIV/AIDS experience
This list of books includes nonfiction, memoir, fiction, anthologies, and poetry with stories that underscore the humanity of people diagnosed with HIV or AIDS.

Excerpt from The Fight of Our Lives: AIDS in America by David Levithan and Gabriel Duckels, available from Knopf Books for Young Readers.

Sign up for the Queerty newsletter to stay on top of the hottest stories in LGBTQ+ entertainment, politics, and culture.