Like so many activists, Jess Tilley discovered grassroots organizing through personal hardship. In 1997, she was living in Northampton, Massachusetts, regularly injecting heroin. A limited access to clean needles led her to reuse dulled equipment, and she developed an abscess.
Through friends, Tilley learned of a program where users could get free new syringes — no questions asked. At Tapestry Needle Exchange, she also discovered a community of people eager to improve their lives and the lives of others addicted to drugs.
“We started talking about the mistreatment we received in emergency rooms,” Tilley remembers. “I told them, ‘We need to advocate for ourselves. They might not listen to just me, but if all of us share our experiences, maybe someone will listen to us.’”
Twenty years would go by before attempts to organize drug users would help to ignite a national movement. Last month, Tilley was among more than 50 active users from across the country who traveled to St. Louis for a first-of-its-kind meeting to lay the groundwork for a coordinated response to America’s war on drugs.
There were an estimated 68,600 fatal overdoses in 2018, 69% of them involving opioids such as oxycodone, heroin, and fentanyl.
The Urban Survivors Union had arranged to attach a side conference to the annual meeting of the non-profit Drug Policy Alliance so members could discuss crucial next steps for growing the movement.
Addressing the historic gathering of the USU on that first morning of the convention, Tilley, the group’s co-director declares: “This is a labor of radical love. When I started doing drug-user organizing in 1998, there were just two of us in the room. And now, as a woman who injects drugs, I’m a little teary-eyed standing up here, looking out at a whole room full of people.”
Robert Suarez, a veteran activist from New York City, then rallies the crowd. “No longer are we going to wait for the slow ticktock of politics,” he tells the group. “We are organizing, we are building power, and we are going to take it to them.”
The union’s first chapter was formed in Seattle in 2009. Other locations followed, and over the past 18 months leading up to St. Louis, the organization established chapters in more than 30 cities across the U.S.
Members say this recent period of rapid growth reflects the new challenges users face. A reinvigorated drug war has the Trump administration instructing prosecutors to impose longer sentences for drug crimes and threatening to use the death penalty against high-level traffickers.
Meanwhile, the opioid epidemic and the spread of fentanyl, a dangerous synthetic-opioid, has sent overdose deaths skyrocketing. There were an estimated 68,600 fatal overdoses in 2018, 69% of them involving opioids such as oxycodone, heroin, and fentanyl. That’s down slightly from 72,200 overdose deaths in 2017, but far exceeds a rough annual average of 15,000 fatal overdoses each year through the 1990s.
Louise Vincent, the USU’s other co-director, describes the epidemic’s impact this way: “You don’t remove 72,000 people from a community without touching people and their families,” she says. “People are feeling this shit hard core and feeling a damn need to do something about it.”
Impact of the War on Drugs
No group is more affected and simultaneously more-often excluded from debates on drug policy than drug users themselves. The St. Louis convention was organized to change that.
“We’re doing this with a team-based system and sharing decision-making – working together to a build a national union that can get shit done,” Vincent tells the group.
Most of those who came together in St. Louis are addicted to hard drugs such as heroin and cocaine. Many live in poverty. They’re stuck with criminal records and marginalized in countless ways that push them to the edges of society.
Everyone has a story about how the war on drugs has harmed them. Tilley, for example, was evicted from her apartment in Northampton after a friend suffered a nonfatal overdose there. More recently, her open identity as a drug user has prevented her from gaining meaningful employment.
Vincent says she lost her leg to stigma intrinsic to the drug war. She was hit by a car and her history as an intravenous-drug user led hospitals in her hometown of Greensboro, North Carolina, to treat her poorly. She was denied adequate pain medication and doctors failed to provide procedures that were required for her damaged leg’s long-term recovery. More than a year after the accident, an infection festered and her leg was amputated.
In addition to reducing overdose deaths, these sorts of incidents are what the USU is organizing to prevent. As with a labor union, the idea is to bring a strength-in-numbers approach to their cause. The group intends to function as an advocacy network, lobbying city, state, and federal governments to enact policies that will save drug users’ lives and alleviate the worst harms of America’s persecution of people who use drugs.
“Nine-tenths of the pain I’ve experienced in my life was caused by the drug war,” Tilley says. “I can look back at so many periods of my life and say, ‘My habit was totally manageable. It was the drug war that made me miserable.’ It was a fear of arrest, fear of discrimination, fear of losing my job—a fear that had nothing to do with my job performance. That’s what has always haunted me.”
There were many steps on the way to St. Louis. One of the largest was taken in New Orleans in October 2018. Drug users met there for the annual conference of the Harm Reduction Coalition (HRC), which advocates for policies such as needle exchange and supervised injection. The HRC has long welcomed drug users under its large umbrella. But in New Orleans, users broke away and marched in the streets on their own, signaling their autonomy and their power as a community with unique demands.
“It’s time for us to stand together,” shouted Shilo Jama of Seattle, who is one of the USU’s founders. He spoke through a bullhorn as their demonstration wound its way along Canal Street from the HRC conference headquarters. “We need to stand here and fight as one.”
Tilley was among about 30 people who walked to a park on the banks of the Mississippi River, quietly calling out the names of friends and family members lost to an overdose or the war on drugs. She cried and buried her head in the shoulder of a friend. After several minutes, the group fell into silence.
Vincent spoke next. “This was put together by people that use drugs, people that sell sex, people that they say can’t do these things,” she said. “We have done them. And we will continue to do them. We will grow bigger and grow stronger. We will not stop until we are fucking free.”
Thirteen months later in St. Louis, Jama reflects on that night. “That was a really big growing-up moment for us,” he said. “It was the first thing that we did as a national movement all by ourselves. And so it was incredibly powerful….If the drug-user movement was in its infancy, it became a teenager at that moment.”
After New Orleans, the St. Louis convention was the next step — and a greater stride forward.
Pulling together a national event for active drug users didn’t come without challenges. It was understood that members would not stop using while in St. Louis. Moving into a legal gray area, organizers made loose arrangements for people to inject drugs in as safe a manner as possible. They encouraged everyone who was going to use drugs to never use alone and to always go slow in a new city with an unfamiliar supply of illicit narcotics.
Other arrangements had to be made for those who wanted to receive opioid-substitution medications such as methadone or buprenorphine. It turned out that the nearest clinic offering those services to out-of-town patients was a 45-minute drive from the conference site in St. Louis. Ensuring those who needed it received medically assisted treatment became one of the most challenging components of the entire affair.
Growing the Movement
At the union meeting, members had to work through a long list of decisions. But Vincent remarked that simply bringing everybody together was a victory in itself. “Just sitting in a room with 60 drug users, that shit felt powerful,” she says.
They agreed that going forward, they’d need to address three basic questions: What is the Urban Survivors Union’s mission? Who gets to be a member? And how should the national organization make decisions? Agreeing on answers is the USU’s next step. Today those conversations continue online.
In the meantime, the attendees in St. Louis have determined that the USU should maintain space for people who have entered recovery and no longer engage in regular drug use. In response to questions around how drug-users’ allies might interact with the organization, one idea was to create an advisory board composed of non-drug users, similar to how public-health authorities and research groups sometimes create advisory boards composed of drug users (flipping the common power structure on its head).
There were also vocal demands for the guaranteed representation of marginalized communities, including sex workers, people who identify as transgender, visible minorities, and homeless people, among others.
“We’re going to take two years to really make sure the structure works,” Vincent had mentioned during an online meeting ahead of the St. Louis conference. “This allows us some room. Then we’re going to have quarterly meetings where major decisions around change can happen.”
Looking ahead, Tilley says, it is imperative for drug users to have a say on health care programs designed for those who use drugs. “Treatment on demand,” she says. “We know that is the answer to ending overdoses. Access to Suboxone and methadone—MAT [medically-assisted treatment].”
Tilley says the USU also intends to provide input on criminal-justice initiatives that have arisen out of the opioid epidemic. A USU campaign called Reframe the Blame, which challenges harsher sentencing laws favored by the Trump administration, is already underway.
She recalls that during the HIV/AIDS epidemic of the 1980s and ’90s, public-health authorities were initially reluctant to involve LGBTQ community leaders in decision-making roles. When they finally did, Tilley says, the expertise of people affected quickly proved invaluable to turning the tide on the crisis.
“Drug-user unions are going to play a major role in ending this overdose epidemic,” Tilley says. “We have the knowledge and the tools to do that, we just don’t have the money and the resources. But with sustainable unions across the country, we cannot be ignored any longer.”
Travis Lupick is a journalist and the author of, most recently, “Light Up the Night: America’s Overdose Crisis and the Drug Users Fighting for Survival.”