By Sam Wall
For queer people my age and younger, HIV/AIDS feels like a boogeyman from before our time. It turns up in health class and sometimes in history books, but the scope of the epidemic is far off and fuzzy. Unless you read accounts by survivors or queer scholars, the full impact of the crisis is lost. The reason for this is that the textbook accounts share the total number of dead, but they fail to capture how and why the virus was able to decimate the queer community in the way it did. They don’t illustrate the ways in which stigma and bigotry allowed the AIDS crisis to become a tidal wave of bad deaths, deaths where the dying received little compassion or autonomy from those with the official power to care for them. Any account of AIDS that doesn’t make clear how those with individual and institutional power and privilege contributed to the spread of the bad death is an account that fails to uphold the true experiences of the dead and the advocates and activists who fought to save their communities from greater loss. This article is my attempt to help younger people, and anyone else who may not have the information, understand why AIDS became the fearful epidemic that it was and the role death played in the fight to change how AIDS victims were treated.
Before continuing, we need a basic understanding of why in the early days of the epidemic AIDS/HIV epitomized a “bad death.” While definitions vary, we can conceive of the bad death as one that is frightening, either because you know what will happen and know it will be bad or because you don’t understand why you’re dying. When AIDS first began spreading, those who contracted it didn’t fully understand what was killing them or how it was doing so. As the disease gained prevalence, those diagnosed with it had likely watched loved ones succumb to the disease, and knew it did not seem a pleasant way to go. The bad death also carries an element of stigma, or arises in circumstances where no one will care for you. AIDS patients were infected with something so mysterious and feared that nurses drew straws to decide who would check on them. To make the bad death all the worse, many victims were left unsure as to whether their body would be treated as they wished it to be after they died.
“When AIDS first began spreading, those who contracted it didn’t fully understand what was killing them or how it was doing so.”
In many, many cases, the queer community stepped up to care for their own when those with the official power to do so either refused or did so with disdain. But even if you knew your loved ones would care for you and, eventually, your body, as you wanted them to, there was no guarantee that the people whose job it was to lay you to rest would actually do so. Funeral homes were reluctant to take the bodies of AIDS victims, and many flat-out refused to do so. The fear and stigma surrounding AIDS did not end with death: many in the death industry felt that bodies killed by the virus still posed a risk. Others agreed to handle the funeral and burial services, but only if the family of the deceased paid for expensive “safety precautions” that were ultimately unnecessary. This placed yet another barrier onto poor queer communities or communities of color. These discriminatory practices ran rampant because, more often than not, those running the funeral homes had more power than those looking for services, leaving the grieving with few avenues to seek recourse. Queer community advocates argued that the shame attached to AIDS, combined with grief, kept many loved ones from lodging complaints against funeral homes who mistreated them or refused to help them. This created a climate in which denial and mistreatment were the rule, acceptance and care the exception. In 1987 a volunteer at one agency by the name of Ms. Gidden conducted a survey of the 500 hundred funeral providers in New York City. She found only 76 that she could recommend to those needing care for a body killed by AIDS.
“The queer community stepped up to care for their own when those with the official power to do so either refused or did so with disdain.”
One of the most beloved funeral homes in the city was preferred, in part, because it made no differentiation between AIDS funerals and any other type of funeral. In a time when any association with the disease felt like a too-bright spotlight, funeral directors who dealt with the deceased without a fuss were viewed as a godsend. The fact that these parlors seemed to be, in the words of Ms. Gidden, “working on sainthood” for simply not discriminating or stigmatizing the AIDS victims in their care speaks to how badly many families and loved ones of AIDS victims were treated. These funeral providers are also a perfect example of how so many of the elements that made AIDS a bad death were avoidable. For instance, the funeral directors who did care for the bodies of AIDS victims understood that the standard precautions for handling bodies were enough to prevent them and their staff from contracting the virus. Which means that at a certain point we can’t dismiss this particular element of the bad death with, “well, they just didn’t know any better.” Because some in the death industry did know better. Working with a funeral home didn’t need to be a painful process for survivors, but a combination of misinformation, stigma, and homophobia meant that it all too often was.
“Working with a funeral home didn’t need to be a painful process for survivors, but a combination of misinformation, stigma, and homophobia meant that it all too often was.”
Even if you did happen to be in an area with an accepting funeral home, dying from AIDS still posed a risk of your remains not being cared for as you wished. In some cases, the family of the deceased only learned about a person being queer when their infection with or death from HIV/AIDS was announced. This lead to everything from awkward funerals where parents and partners met each other for the first time to families refusing to let loved ones (be they partners or friends) care for the deceased according to the deceased’s own wishes. Because same-sex relationships had no legal recognition at the time, partners had no recourse if parents chose to bar them from caring for the dead.
There were also those AIDS victims who were without anyone to tend to them as they died or bury them afterwards. Sometimes their families did not want their remains, either because they were gay or because they had died from AIDS. In many cases members of the queer community cared for each other if families failed to do so. But sometimes people passed without a community to care for them. We’ll likely never know where all of those in this category ended up, although I found evidence that 16 victims were buried, unnamed, on Hart Island in New York.
It was in preventing this iteration of the bad death that a woman named Ruth Coker Burkes became known as “the angel.” From 1984 to the mid-1990s, Burkes cared for hundreds of AIDS victims, including gay men rejected by their families. By Burke’s own account, homophobia and stigma were everywhere, and her own role as a caretaker and advocate grew the more she encountered those phenomena. She buried over three dozen of the people she cared for after their families refused to do so, performing the physical burial of the ashes and the funeral rites, as she could not convince any religious figure to preside over the ceremony. She stockpiled medications like AZT for those who came to her after she learned that some pharmacies refused to carry it because of its association with AIDS. She would help patients fill out their own death certificates, knowing that she’d never be able to get ahold of the families to do so after they died. Her story also highlights how integral the queer community was in taking care of its own during the crisis, as her work would not have been sustainable without financial support from the gay bars in her state. She also tells of the myriad partners and parents who did appear to care for each other while at her hospice, a practice she encouraged. She worked with loved ones and with patients to make sure they had autonomy in their finals months, an attempt to help those who had felt powerless in the face of the disease and discrimination take back some of that power. Indeed, it appears that Burkes humanizing, non-stigmatizing, community focused approach was more effective at keeping the bad death at bay than the hands-off, fear and judgement-filled variety used in most hospitals. People in her care generally lived two years longer than the national average. If her mode of care has been widely adopted sooner than it was, there’s no telling what the impact might have been. But such swift, compassionate institutional action was a long time coming.
Why was that?
Because the stigma that made AIDS the bad death was not restricted to families, hospitals, and funeral homes. This bad death was allowed to spread in part because the epidemic was not met with concerted governmental efforts to prevent further transmissions and deaths. Because so many of the victims were queer or intravenous drug users, the Regan administration saw no urgency in addressing the matter. In fact, recordings from White House press meetings show the president and his cabinet expressing complete disinterest and even cracking jokes when asked about the epidemic. (You can hear the recordings of these comments in the short film When AIDS was Funny, although you may feel like rage-flipping a table afterwards). The people with the resources to slow the spread of the virus and expedite the search for treatments for the disease chose to use their power and privilege to ignore the situation, even when publicly confronted about it. Regan gave way to Bill Clinton and Bush the First, both of whom continued to ignore the epidemic and sometimes actively blocked efforts to mitigate it. For example, they prevented the creation of clean needle exchanges. As the days and months ticked by, the national situation for communities dealing with AIDS did not improve.
Until the queer community made their bodies, including their dead ones, impossible to ignore.
“It was in preventing this iteration of the bad death that a woman named Ruth Coker Burkes became known as “the angel”. From 1984 to the mid-1990s, Burkes cared for hundreds of AIDS victims, including gay men rejected by their families.”
Because the mainstream approach to death in the U.S was and is to sanitize and obfuscate the realities of decay and grief, dead bodies gain a particular kind of power. If the belief is that remains of the dead should be kept out of sight whenever possible, seeing them (or even something that contains them, like a coffin or hearse) provokes a reaction: shock, revulsion, grief, curiosity. The important part is that the intensity of that reaction can make that moment stick in our brains. If the remains are drawing attention to a larger issue, we may find that issue harder to ignore [cut, repetitive (though not impossible)]. This power may partially explain why death imagery had long been a tool of AIDS activists, with wooden coffins and headstones a common sight during protests. Using symbols of the death and loss hitting the queer community garnered media attention, and made clear to at least some members of an apathetic public how dire the situation was. Yet the most privileged and powerful people still refused to do anything substantive. So, in 1992, the AIDS Coalition to Unleash Power (ACT UP) organized the Ashes Action in front of the White House. During this action, the cremated remains of loved ones killed by AIDS were dumped onto the White House Lawn. The ceremony was repeated in 1996, with the cremated remains including people like ACT UP member Connie Norman. The reasons for the ceremony are summed up by ACT UP founder Eric Sawyer in an interview by Vice for the 20th anniversary of the second Ashes Action:
“Carrying a wooden coffin in the streets doesn’t seem to be getting your attention. How about we dump ashes and bone fragments from our friends who died of AIDS on your lawn? How about we literally carry our dead bodies that you condemned to death to your door? Will that get your attention? Part of it was a warning: We will literally start dumping our dead on your doorsteps unless you get your fucking act together.“”
The Ashes Action can be seen as a way of taking a bad death and making it into something good. Not beautiful, not painless, but good. It acknowledged that the dead and their bodies hold immense cultural power, and that power could be harnessed to change things for the better. Too, the Ashes Actions honored the wishes of the dead whose remains were deposited on the lawn; many of them shared Connie Norman’s desire to have their death somehow, in some way, help save others. By using their remains during the ashes action, the living were able to harness the cultural power of their dead and use it to push for social changes that would make the bad death from AIDS disappear.
“We will literally start dumping our dead on your doorsteps unless you get your fucking act together.”
In many ways, the work of activists and advocates tremendously decreased the ways in which AIDS was a bad death. AIDS is no longer the automatic death sentence it once was and an increased understanding of how the virus works lead to better treatment methods and medications such as PrEP. Those changes mean that people who contract the illness have more years and options at their disposal than they would have thirty years ago. But it is remiss to say that the specter of the bad death is gone. Treatments are not always accessible to those with limited income or limited health insurance and communities of color are still disproportionately affected by the virus. And all it takes is one or two indifferent or bigoted government officials and suddenly the money for prevention efforts, testing, and treatment evaporates and the number of new cases increases. In countries besides the U.S, there are still reports of funeral directors refusing to care for the bodies of AIDS victims due to misconceptions about the disease. Make no mistake, the institutional homophobia that cost so many lives is not gone. In spite of us knowing that AIDS can infect anyone it has not shaken its identity as “the gay disease,” as a punishment for what some see as the sin of being queer.
I don’t write that intending to frighten anyone. Rather, I hope to offer a reminder that the plague was only stemmed when those most affected by it refused to be silenced and demanded that the government bear witness to the deaths it had a hand in. After all, there is privilege in knowing that those in power will not decide to strip resources from your community, introduce targeted legislation, or otherwise invite the bad death back into your community. That is a privilege that the queer community still lacks. But the deathly history of AIDS shows us is that a community, even one united by incalculable grief, can push back against that bad death wrought by the privileged and demonstrate that they are not as powerless as those who are bigoted wish them to be.
Sam Wall is a queer writer and sex educator living in Nevada. She is the Assistant to the Director of Scarleteen.com, where she helps provide high-quality sex ed to young people around the world. She is interested in all the ways that gender, sexuality, and death intersect throughout history and in current cultures. She also enjoys exploring the ways in which marginalized communities use elements of horror and the macabre as forms of self-care and resistance.
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