Undoing Drugs

one

Facing AIDS

IT’S HARD TO DESCRIBE NOW JUST HOW FRIGHTENING AIDS WAS IN THE LATE eighties and early nineties, before effective treatments existed. Everyone knew that the disease was nearly 100 percent fatal, even as we tried to deny the fact in hopes it would spare the people we loved. We also knew—and just as furiously tried to deny—that as the virus pulled our friends toward inexorable death, the illness itself was often unspeakably grim.

Untreated HIV unleashes an immense catalog of suffering, in countless, varied, lingering, cruel, and often disfiguring agonies. Sometimes it blinds you; sometimes it starves you; sometimes it causes cancer, with lesions, large and small, everywhere. Almost always, there is pain. AIDS can usher in the worst symptoms of every viral, bacterial, and fungal disease possible—as well as some cancers—as the wounded immune system can no longer fight the “opportunistic” invaders and malignant growths it encounters. It is brutal.

Facing this, as I began to learn about harm reduction, I was too terrified to get tested. It wasn’t that I worried about my recent risk behavior. After I’d met Maureen, I bleached my works, every time, thoroughly, without fail. However, I was seriously concerned about the chances I’d taken in the few months that I’d shot up pre-Maureen in 1985 or ’86.

I’d only been a daily injector for a short while when I learned about bleach—and I certainly wasn’t yet shooting up dozens of times a day, as I would be by August 4, 1988, when I finally stopped. But during my active addiction, I had shared needles with at least one person who I found out later had tested positive. That was the man who’d initiated me into injecting, using his needle—probably in late 1985. I’d gotten hepatitis pretty soon thereafter, so there was no doubt that I’d shared unsterile works at least once. And the friend who first injected me had died by suicide, not long after he got his own HIV test results. I wasn’t just neurotically anxious: I had real reason to be afraid.

Consequently, I didn’t want to get tested until I knew I had at least some chance of remaining in recovery if the results were positive. If I was positive, I knew, there would be a before and an after—and I wanted that before to be as long as possible.

Then, when I had around two years in recovery, I was assigned to write my first article for the Village Voice—after many, many pitches to many, many places. Finally, I’d have the chance to make the case for clean needle availability in a major publication, from the perspective of someone who had injected drugs. Finally, I’d be able to explain why all the arguments against syringe exchange were flawed. At last, I’d be able to show why people who use drugs deserve a chance at life just like everyone else does. Perhaps most critically, I’d be able to represent at least one voice of the people who were most affected and who were rarely heard from in media debates about the “controversy” over saving our lives.

As I’d been instructed by my rehab, I was attending twelve-step meetings daily. I was also attending weekly meetings of ACT UP—the AIDS Coalition to Unleash Power. The group was quickly becoming a force to be reckoned with through its radically creative approach to activism. I wanted to do everything I could to fight both AIDS and addiction. Ironically, I probably also felt ready to deal with getting tested because I felt I was finally beginning to make a contribution—and that this, perhaps, would mean I was worthy of life.

I recognized the paradox of believing that everyone else deserved the chance to avoid AIDS while feeling that, for myself, I needed to earn that opportunity. I understood this as part of what psychologists call the “just world hypothesis”—or the deep-seated, human need to see the world, somehow underneath all the inequities, as fair. But I was still under its influence. I thought I might magically not be positive if I could prove myself worthy. It would take immersion in the harm reduction movement for me to learn how truly insidious the idea that only some are “deserving” can be.

I made an appointment and visited a run-down New York City Department of Health clinic, located in Chelsea at Ninth Avenue and 28th Street. The date I was given to get my blood drawn was January 16, 1990. The night before, I had had a nightmare about it: I woke up screaming, at least in my head, “I don’t wanna die, I don’t wanna die, I don’t wanna die.” I forced myself to get on the subway and show up.

I soon found myself in a waiting room plastered with posters about pregnancy and all kinds of sexually transmitted diseases. While the clinic had clearly seen better days, the warmth of the staff and the beat-up cleanliness of the place pleasantly surprised me. I warned the person who drew my blood that I was high risk because I had been a drug injector and suggested that they take the sample from my right arm, which had fewer damaged veins. A counselor went over some basics about HIV and gave me an appointment nearly two weeks later to receive the results. Back then, clinicians were too concerned about how people might respond to bad news to provide any test results over the phone.

I wrote this in my diary the day after I got the test: “13 days till I either never have to worry about it again or constant nearness of death and slow progressive decline in life quality. Fear. Fear… Feel sick from worry. Fear. Don’t want to die.” Looking back, I still don’t understand how I got through those days without relapsing.

But at the time, I knew—regardless of whatever my results would be—that I had to try to make sure that other people who injected drugs at least knew how to protect themselves. To do that, I had to find out the best ways to promote safety—and highlight, in as many articles as I could succeed in publishing, the activism and practices that were already being done to help. I had to learn where the idea of harm reduction came from and why so many others found it so threatening.

NO ONE KNOWS MUCH ABOUT THE FIRST AMERICAN WHO WAS INFECTED WITH HIV by sharing needles. The virus probably began to colonize syringes in New York City in 1975 or 1976, when Jimmy Carter was running for president and Queen’s “Bohemian Rhapsody” ruled the charts. But that’s the extent of our knowledge. Since men are more likely than women to inject drugs, it’s likely that the first to fall ill were male; however, even that isn’t certain. We don’t know how old these people were, who they loved, what they liked, how they lived.

We don’t know whether it was their first injection or their five hundredth, whether they were using a plastic syringe or a glass one or a jury-rigged eyedropper—or how they discovered that they were sick and died. Researchers suspect that the virus traveled first from gay or bisexual men and then to people who inject drugs, but even that isn’t confirmed by data.

All we can say for certain is that HIV had spread far enough from needle to needle in New York City that it had also infected three infants born in 1977—either before they were born or during their mothers’ labors. All of these babies had mothers who injected drugs.¹ Their cases were only diagnosed retrospectively via searches of medical samples decades later—and their stories and those of their parents are lost to time.

The first known adult who could have been infected by unsterile syringes was a gay man who also injected drugs. This case, too, was uncovered via a historical search of anonymized hospital data. His infection is believed to have occurred in 1979. Nothing more is known about the man himself.

While the first contemporaneously reported AIDS cases in gay men heralded the start of what was soon understood to be a global pandemic, the spread of the disease among people who take drugs was insidious. From the beginning, we were ignored, dismissed, minimized, or neglected. Reporters and historians tracked down some of the gay men whose illness was first known only in the dissociated language of medical journals. Activists made sure gay voices were heard, from day one. Members of the LGBT community told their stories in loving detail, imbuing them with meaning. However, the people with addiction whose disease helped define the new disorder for physicians remain anonymous. Even their activism often went unheralded. No actors or fashion designers or even drug-loving rock stars were holding black-tie benefits to save people who inject drugs from AIDS.

In fact, if HIV at first had infected only people who inject drugs, it might have spread much further into the rest of the population before anyone ever recognized that a new, fatal infectious disease existed. Physicians who wanted to warn the public that babies were being born infected were, at first, repeatedly rebuffed. In 1981, when a pediatrician in the Bronx tried to publish case reports suggesting a new immune disorder in babies whose mothers had injected drugs, his papers were rejected.² Indeed, if researchers had paid closer attention to the health of people who shot drugs, the virus might have been discovered years earlier. But, as a writer in Newsday put it in 1988, “The average American’s sympathy for heroin dependency could fit on the tip of a hypodermic needle and there would still be room for, say, a small airport.”³

This neglect pervaded both the scientific literature and the media: between 1981 and 1986, there were ten times more research papers on AIDS among gay men than there were on AIDS and addiction. The New York Times had at least some coverage of the epidemic among the people it insisted on calling “homosexuals” (they preferred “gay men”), starting in 1982. However, the first mention of AIDS in straight drug injectors in the paper of record didn’t appear until 1985.⁴

Later, data from stored blood samples of people in treatment for heroin addiction showed that between 1978 and 1981, the virus had spread well, virally, and undetected among New York’s estimated quarter million intravenous drug users. The proportion of injectors who were infected soared from less than 20 percent to over 50 percent in just three years.⁵ This pace is easily replicated anywhere that clean syringes are rare because needle sharing is a very efficient way of transmitting blood-borne disease, second only in deadliness per exposure to blood transfusions. In New York, that meant thousands of people were at great risk.

But few seemed to care. A few more dead “junkies”? So what? Drug-war-crazed politicians insisted that addicted people chose their “lifestyle”—along with its high mortality risk. Their crusade demanded a high death toll from drugs to justify the extreme prison sentences, constriction of civil liberties, invasive searches, mass incarceration, and other penalties it imposed. Even recovery groups like Narcotics Anonymous were nihilistic. A commonly heard slogan was “Some must die so that others may live.”

At the same time, those who tried to argue that addiction is a disease did so within a social and political context that accepted its criminalization without question. While experts often claimed that we must view addiction as a medical disorder, they simultaneously talked about how it made people into liars, thieves, muggers, and murderers—and why the threat of prison was required for effective treatment. Disease theorists also had to make their case within a coercive and highly punitive treatment system, which typically focused on having patients find a higher power, take moral inventory, and face their “defects of character” by working the twelve steps—hardly a nonjudgmental clinical approach.

In essence, the equivalent of a death penalty for people who take unsanctioned drugs was acceptable and unremarkable before and while AIDS was first hitting the United States. In 1990, the Los Angeles police chief actually proposed to the Senate that “casual” drug users should be “taken out and shot.”⁶ Few thought about how odd it was that equally or more dangerous substances were advertised and sold legally with quality controls—while it was okay, even admirable, to let users of other substances die to “send a message.” Certainly, calling for us to be actively exterminated was seen as a bit extreme—but it was not as far outside the mainstream of politics as it would be to call for the deliberate killing of any other group of people.

This war on certain drugs had begun in 1914, with the Harrison Narcotics Act, which banned nonmedical use of cocaine and morphine and prohibited opium outright. It was escalated by the Nixon administration, starting in 1971, and was further expanded by Ronald Reagan and George H. W. Bush in the 1980s. And it was funded even more extravagantly by Bill Clinton in the 1990s. The drug war was generally viewed as wholly justified because alcohol, caffeine, and nicotine weren’t perceived as drugs at all. And questioning it in the late 1980s and early nineties was like attacking motherhood and bashing apple pie. Anyone who did so risked being tagged as a traitor who wanted to hook American children on poison and destroy the greatest country in the world.

Gay rights had become a political cause and a movement long before AIDS hit, blossoming after the Stonewall riots of June 1969. However, it would take the HIV pandemic to spur widespread activism to argue for the inherent humanity and the value of the lives of people who take drugs. That’s a core message of harm reduction—and the activists who spread it began to do so as AIDS cases and deaths among people who use drugs began to skyrocket.

YOLANDA SERRANO SUSPECTED THAT THE GRAVE ILLNESS SHE WAS SEEING IN her clients was the same plague that had begun devastating gay men. In 1981, she was working at Long Island College Hospital in Brooklyn⁷ as an addiction counselor in methadone treatment. Unlike many methadone counselors, whom patients often visit grudgingly because they are required to do so, Serrano was well liked. Instead of coming just once a month or once a week, some of her clients saw her much more frequently. In fact, people who were assigned to other counselors would often request Serrano instead.

Serrano stood out because she so clearly cared. She wasn’t just punching the clock on a job that often paid little more than minimum wage and was almost as stigmatized as its clients. She was the rare counselor who would attend court dates or welfare appointments to guide people through the often-hostile bureaucracy. She knew names and family members and likes and dislikes, not just methadone doses and urine test results.

But more than ever before, the people she treated were sickening and dying. They weren’t overdosing or being killed by the typical infections that can result from unsterile injection technique. These folks were withering away, becoming weak, getting one rare disease after another—only sometimes barely recovering for a bit before they began declining again. “It’s hard,” she told a journalist. “You see people for five years, six years, they start losing weight… The whole thing is their braveness. I’ve not seen one of them who hasn’t been brave.”⁸

Serrano, who favored oversize glasses and short haircuts, was born in Puerto Rico but grew up an “army brat” all over the United States. By age thirteen, she’d lived in Arizona, Alabama, and Missouri, shunted to the “colored” drinking fountains in the segregated South. In 1961, her family settled down in Brooklyn. Both her parents were driven: her father once held three jobs at the same time, and her mother worked for the New York City Board of Education while she raised two daughters.⁹

Unfortunately, Serrano herself married young and disastrously. When she tried to leave her abusive husband, he broke into her apartment and tried to kill her. Not long afterward, he was arrested, convicted, and sent to prison. By that point, she had two young daughters of her own. “I was the only one in the family who wound up on welfare,” she said.¹⁰

As soon as she could, she began working and going to school, graduating from St. Francis College in Brooklyn and pursuing a career in social services. Before becoming a methadone counselor, she had worked in the narcotics office of the Brooklyn District Attorney and at the Victim Services Agency, with others who, like her, had survived domestic violence or other crimes.¹¹

And then her clients began dying, so many, so young. In late 1985, she was invited to a series of meetings held at the New York state agency that oversaw addiction treatment. Under the leadership of a Latino man who had overcome heroin addiction himself, this agency had preferentially hired many others with similar personal experience. One of these employees had become concerned about the lack of a voice for drug injectors in the AIDS crisis. He knew that a state agency couldn’t do advocacy, but he hoped to start a group that could. He invited treatment providers, researchers, and other people in recovery to help set the idea in motion. Their first meeting was held on Halloween of 1985 at the state’s offices on the sixty-seventh floor of the World Trade Center, with a sweeping view over the Statue of Liberty.¹²

Everyone, including Serrano, agreed that an advocacy group was necessary. And so they decided to revive an organization of former IV drug users and professionals who worked in the addictions field, known as the Association for Drug Abuse Prevention and Treatment (ADAPT). Originally organized in 1979 to try to unite the often-warring advocates for different therapeutic approaches to addiction in order to seek greater funding together, it had not succeeded in bridging those gaps. But the shell left of ADAPT had the critical advantage of having an existing organizational structure, a few hundred dollars in the bank, and the IRS designation that allowed it to accept tax-free donations and get government grants. Before long, Serrano was hired to be its executive director, and a social worker and former drug injector named Edith Springer (remember that name!) became the chair of its board.

By 1986, ADAPT members were providing “buddy” services to people who were ill, visiting them in hospitals, bringing food and soft pajamas, trying to make them feel just a little better. Because one of ADAPT’s leaders worked at Rikers Island, members were able to start visiting the city’s massive jail almost immediately after the group was revived.

There, they came upon some of the worst atrocities of the epidemic—and began fighting for change. While New York state had recognized that AIDS was a crisis for people with addiction, not just gay men, unfortunately most treatment centers, at first, just buried their heads in the sand.

Consequently, people who injected drugs were actively rejected by nearly all of society’s institutions, including those that were supposedly designed to save and serve us. Addiction treatment programs initially expelled or simply refused to admit HIV-positive folks. Many twelve-step support groups shushed discussion of the virus as an irrelevant “outside issue,” which should be kept quiet to keep the focus on addiction. When I tried to post flyers about using bleach to clean needles at the methadone program I attended in 1988, I was told it wasn’t permitted because that might encourage people to relapse. Even family members were encouraged to reject us: that would supposedly help us to “hit bottom.” In reality, it meant that many of us died alone.

Jails, however, didn’t have the option of refusing to take prisoners. AIDS hit Rikers Island—which during these years held 10,000 to 20,000 people at any given point—long before the disease was recognized.¹³ Brooklyn’s SUNY Downstate Medical Center had begun seeing cases of what we now know to be HIV infection by the late 1970s. By 1978, medical staff there had already identified a syndrome of fevers, night sweats, swollen lymph nodes, and extreme weight loss. They called it “Rikers Island adenopathy,” and didn’t realize it was a new infectious disease.¹⁴

During the late seventies and early eighties, rates of death among injection drug users soared. People on the street talked about “junkie pneumonia” or, more poetically, “the dwindles.” AIDS doctors at San Francisco General Hospital, too, would later recall unexplained fevers that they’d seen start to pop up among drug users in the late 1970s. Emaciated, sickly drug users, however, weren’t seen as anything new. Only years later did they recognize that these cases had probably been HIV infections.¹⁵

When officials did finally recognize that there was an epidemic afoot at Rikers, however, they began segregating the sickest patients. Keep in mind that around two-thirds of the jail’s incarcerated population had not been convicted of the crime for which they’d been arrested. They were locked up only because they were too poor to make bail. Due to their poverty, their addictions, and, more often than not, their race, the presumption of innocence was more like an assumption of guilt. These were lives that very officially didn’t matter.

Nonetheless, even jaded, drug war–supporting New Yorkers were capable of being shocked by brutal incarceration conditions, once they became known. ADAPT helped organize the men who were being held in shocking conditions. They began a series of hunger strikes in May 1986. One of the leaders inside was thirty-two-year-old Michael Yantsos, whose name should be better known as an early AIDS activist. Born in Queens, he had started using heroin at fifteen, which led to a string of arrests for dealing, theft, and check forgery. His most recent arrest had been in February 1986. Yantsos became one of the first activists to make a difference in the lives of drug users with HIV.

“The wind would come in off the river and it would be a bone-chilling wind,” he told an interviewer, describing how the single cells in the jail were freezing in the winter and also unspeakably hot during summer. Rats, mice, and roaches crept about freely; the ceiling leaked so badly that each cell had a mop, despite the potential for misuse as a weapon. The inmates were not even provided with bed linens, just paper sheets.

“Unbelievably depressing,” Yantsos said, describing how, around once a week, one of his fellow prisoners would die, often in extreme distress. No pain medication was permitted, regardless of whether people had cancer or other excruciating AIDS-related conditions. Mistakenly giving dying people with addiction drugs that might feel good was somehow worse than letting them suffer extreme pain.

To protest, Yantsos and his fellow activists began refusing food. This is dangerous for people with AIDS: they can easily develop malnutrition as their bodies are already wasting away from the disease. The hunger strikers used their limited phone calls to contact whatever media they could. After a New York Daily News photographer and reporter documented the medieval level of medical neglect, a new AIDS ward was rapidly created. And in many ways, it was genuinely better, with more appropriate food, cells, and services. But it was still awful: as late as 1989, nurses sat in an enclosed booth and wouldn’t touch the inmates, who were left to bathe and care for one another as best they could.

From early on, ADAPT also began providing legal support, arguing successfully for many people who would otherwise have died in jail to be freed on compassionate grounds. But Serrano and the other members quickly realized that this wasn’t enough. Sitting in jails and hospitals and soothing the sick wasn’t going to stop the wasting disease; freeing incarcerated people wasn’t going to stop those who weren’t already infected from becoming ill. Serrano felt she had to do more, even as her own family sometimes felt resentful and neglected. As her sister put it, “She’s given her last dollar to them; she’s left her bed to go to somebody else’s bedside who’s dying. She’s strong for everybody else.”¹⁶

Still, Serrano wanted to prevent new cases; she had already seen too much dying and that seemed to be the only way to end the crisis. And so the group decided that they would take the fight against AIDS to the streets. It was clear by this point that the virus was being spread by sex and by shared needles. There was no cure, and it was an ugly way to die. At least they could warn people at highest risk that they should avoid sharing needles if at all possible and tell them to use condoms. And so out they went into the shooting galleries of the Lower East Side, Brooklyn, and the Bronx. Starting in 1986, they began teaching every injector they could find to use bleach to clean their works if they couldn’t avoid sharing them.

During my own active addiction, I never knew about ADAPT: the small group of people I injected with were much more privileged and mostly didn’t use shooting galleries. That meant it was sheer luck that I happened to learn about bleach from Maureen Gammon. And, as far as I can tell from my research, ADAPT itself had learned about bleach from the same place that she had: the group of researchers and activists in San Francisco that employed her. The story of bleach for needles starts with a cache that was discovered behind a brick in the wall of a punk club in the Bay Area.

THE BRICK DIDN’T LOOK MUCH DIFFERENT FROM THE OTHERS IN THE ALLEY beside San Francisco’s unlikely punk palace, the Mabuhay Gardens. The club occupied the lower level of a former theatre in a neighborhood then dominated by strip clubs. In some sections, the walls were painted in colors of varied intensity. Some were left bare and were irregular, dusty red, and chipped. Other parts of the masonry were covered in DIY posters for bands like the Dead Kennedys and Circle Jerks, with collages of shocking photos and lettering that looked like it was cut from a ransom note.

But to those who knew what was behind it, this particular brick hid a portal to pleasure—a secret shared by dozens of the Mohawk-wearing, black leather–clad youth with safety pins through their ears. Stashed behind it was a needle, dulled by having been used for many injections. And those who shared the works were instructed to put the spike back in the small space behind the brick once they were done.

When Sheigla Murphy heard about this semi-secret syringe, she was horrified. Murphy was a divorced mother of two young children. She’d been assigned to intensively interview teenage punks in the Bay Area for a research project, which had begun in 1981¹⁷ as a way to understand and better intervene in youth drug culture. When one kid told her about the secret stash in the wall, she had to hold back her emotional response. She wasn’t just distressed to have it confirmed that some of her research subjects were injecting, although that was certainly worrisome. What was far worse was that she knew that you couldn’t design a better way to rapidly spread AIDS.¹⁸