Birth of a Movement

“Love Rules: The Harm Reduction Archives of Heather Edney and Richard Berkowitz” continues at MOMA PS1 in Queens, New York, until Oct. 6. 

The history of harm reduction in the United States, led by people who use drugs, needs to be remembered, celebrated and understood — especially as a backlash full of lies and disinformation about what harm reduction means is unleashed across the country and beyond.

A piece of that radical history is on display through Oct. 6 at the Museum of Modern Art-affiliated MOMA PS1 in Queens, New York. The exhibition, “Love Rules: The Harm Reduction Archives of Heather Edney and Richard Berkowitz,” features memorabilia, photos and a short video that document how activists created both a syringe service program and educational materials for people using drugs.

Edney was a co-founder of the Santa Cruz Needle Exchange Program in California. Opening in 1990, it was one of the earliest unsanctioned harm reduction programs in the United States. Edney was later mentored by women who had also pioneered harm reduction: Joyce Rivera, Edith Springer and Imani Woods. They all met at the first Harm Reduction Working Group meeting in 1993, alongside other national leaders in sterile syringe provision. Edney went on to mentor the next generation of harm reductionists.

A screening of a new 17-minute documentary about Edney’s life and work, “Love is the Drug,” took place on April 26, with a moderated discussion with Edney and Liz Roberts, the director. Shot in the style of a zine, the documentary tells the story of Edney’s drug-user organizing while caring for MyLeia Loya, a child who was born HIV-positive. “Love is the Drug” uses a trove of archival materials: Edney’s television appearances, photographs, zines, flyers and community health education videos, with updated footage of Edney and Loya in Santa Cruz.

During the discussion, Edney, who is incredibly humble and normally eschews the spotlight because she’s always worked with a community of activists, explained how — with no money and no support from state, local or federal agencies — she and a group of young women who used drugs handed out sterile syringes. The backdrop of this life-saving work was the HIV/AIDS epidemic — a mass death event that the Reagan and Bush administrations ignored for years, providing almost no funding to support those affected.

“Everyone was dying of AIDS and overdose,” Edney said. Sharing needles was one of the main ways HIV was transmitted, and she knew that no one was coming to save people like herself who injected drugs.

With courage and creativity, she went DIY. Back then, syringe distribution was illegal and people risked arrest. Laws that kill people shouldn’t be obeyed, and the Santa Cruz Needle Exchange Program continued to supply sterile syringes, despite multiple arrests.

“We didn’t ask permission,” Edney said. And her advice for harm reductionists today, confronting the fentanyl-involved overdose crisis, remains: “Don’t ask for permission. Don’t wait for public health departments.”

Harm reduction activists in the ’90s had to make the case over and over again that providing sterile syringes was not “enabling drug use.” Even after mountains of research documented that syringe programs helped stop the spread of HIV and saved lives, it took years for them to open in other parts of the country. Unconscionably, they still face opposition today.

Despite the obstacles, Edney and her crew created a model by and for people who use drugs. It’s the model that is used by syringe service programs 35 years later, with a few updates. It is still keeping people alive, too.

Developing educational materials that were harm reduction-based and getting them into drug-using, marginalized communities was also a priority for Edney. People who use banned drugs were fearful and distrustful of the medical establishment that discriminated against them. Educational outreach efforts from official sources would have minimal impact. And the 1990s was before Facebook, X and TikTok, as well as the widespread use of cellphones.

Edney didn’t have those tools to disseminate information rapidly and again had to go DIY. The message had to go drug user-to-drug user. So she created and was the managing editor of the zine Junkphood.

“The reason why we started this project is cause we are sick of being told what to do by the ‘experts,’” a Junkphood editorial explained. “They give us information we have no use for and usually it is mixed up with messages about how we should quit drugs cause drugs make us fucked up. … We, as drug users, are the experts.”

Junkphood contained a clever, eclectic mix of art, interviews, politics, stories, photography and practical advice for using banned substances. And it was funny. One cover was a play on the breakfast cereal Cocoa Puffs, which had a mascot called Sonny, an orange cuckoo. The headline read, “Coked-Up Puffs – bet you go cukoo on coked-up puffs!”

The exhibition also displays cutting edge, how-to guides: “Getting Off Right: A Safety Manual for Injection Drug Users” and “How to Have Sex in an Epidemic: One Approach.” 

Those two vital publications could never have been written by local public health or federal agencies because out-of-touch bureaucrats promote abstinence and homophobia.

“How to Have Sex in an Epidemic” was written by two gay men, Richard Berkowitz and Michael Callen, and published in 1983. It was among the first publications to recommend the use of condoms to prevent HIV transmission. Centering on safe sex, the booklet was also an early promoter of “sex-positivity” — not presenting sex in a negative or shameful light. Fisting, water sports and the use of poppers were explained to readers.

“Getting Off Right” was written by Sara Kushnar and Rod Sorge, and published by the Harm Reduction Coalition (now the National Harm Reduction Coalition) in 1998. It’s been updated over the years. The manual is comprehensive—from preparing a shot and where to use (avoid public places if possible), to finding the right vein, “dirty hits,” overdose and naloxone. There are illustrations showing how to tie a tourniquet, where to insert a needle and injection locations in order of safety. 

Both publications have stood the test of time.  

The history of harm reduction and drug-user activism hasn’t received enough recognition. It transformed U.S. society, saved countless lives, and created moving and beautiful art that amplified the voices of people who use drugs.

The “Love Rules” exhibition pays tribute to pioneers and the harm-reduction strategies they invented and refined during dark and risky days. It is a long overdue acknowledgment. More presentations of the radical, life-saving activism of this era should be curated for the public.    

Photographs of exhibits, including top photograph of detail from Village Voice article about Junkphood, by Helen Redmond.