The Loneliness of the Addict Activist

By Maia Szalavitz 03/24/13

Since AIDS, I've worked to try to help addicts unite as a political force. Go ahead and laugh. But we remain the only "disease community" that can't stand up for itself.

Howard Josepher photo

It’s hard to convey the sense of crisis felt by people using IV drugs and facing AIDS in the early ‘90s: In New York, at least half of needle users were already infected—at least 100,000 people—and there was no treatment, let alone cure or vaccine, in sight. The presence of death was always palpable. As was, for me, a deep frustration that most people in recovery seemed unwilling or unable to do anything about it.

While gay men had ACT UP street activism and Gay Men’s Health Crisis (GMHC) services, there were no similar groups for addicts. In fact, the very idea seemed outlandish: Active addicts were thought to be too chaotic to even bother to save their own lives, let alone take political action, and recovering people were seen as too fragile or too wrapped up in the apolitical 12-step movement to organize.

Our own organizations stood in the way of what would save our lives and even shunned people who were ill or dying.

Mitch Rosenthal, the director of Phoenix House, which was then the largest drug-treatment provider in the city and a powerful political force, was one of the most steadfast opponents of needle exchange. Some treatment programs even refused to accept people infected with HIV. More often than not, the organizations that should have been supporting us stood in the way of what would save our lives and even shunned people who were ill or dying.

In those years, I was attending 12-step programs daily—and finding it extremely distressing that few recovering people seemed to think action against AIDS was essential. I recognized that the traditions wisely precluded political activism in the name of the program, but surely that didn’t mean recovering people shouldn’t otherwise try to fight for their own interests?

And so, in 1993, I wrote an op-ed for the Washington Post, using my own byline to show that it was possible to be "out" about recovery. It began like this:

People don’t think of addicts like me when they imagine intravenous drug users. I'm a white woman who works as a producer for a national PBS talk show. Five years ago I was shooting cocaine and heroin up to 40 times a day.

When Americans picture a heavy drug user, they see an ignorant, immoral, undisciplined criminal: the worst caricature of the racist view of minorities. But because addicts are in the closet, no one banishes that image. And this lets addiction and AIDS continue to kill us. If we want to fight those diseases, recovering addicts had better come out and organize. There's no other constituency for the change we need.

When I wrote that, I was looking for any signs of activism by drug users and former users, hoping to write about them. I discovered that around the world, there were small groups, typically led by one or two charismatic people, which were attempting to organize. From London and Liverpool in England to San Francisco and Portland, Oregon, some drug users did not simply see AIDS as a “thing we cannot change.”

Fortunately, there were a few inspiring examples in New York. Last week, I wrote for The Fix about ACT UP’s Needle Exchange Committee and Jon Parker, but also critical to the struggle was an organization founded by Yolanda Serrano, known as ADAPT, or the Association for Drug Abuse Prevention and Treatment. Starting in 1987, they worked in some of the city’s hardest-hit areas, giving out bleach kits to clean needles before syringe exchange was legalized.

In fact, it was the threat by Serrano to start handing out needles illegally that led the city to found a pilot needle-exchange program in 1988, under Mayor Ed Koch. There was widespread opposition from some minority groups who actually labeled needle exchange as genocide—seeing it as a cheap replacement for treatment aimed at killing people off, rather than helping them. That spurred the next mayor, Mayor David Dinkins, to shutter the program, which, having been based just across from the city’s courts and prosecutors’ offices, was not exactly in a location likely to succeed, anyway. He said that needle exchange was a “surrender” in the drug war; his health commissioner even claimed that drug use was a more serious health threat than HIV.

But that led to the activism I covered last week, which resulted in the de facto legalization of needle exchange programs in 1990 in the New York state (although formal changes in the law would come much later). This helped lead to the virtual elimination of HIV infections in children and a decline in prevalence among IV drug users from 50% in the early ‘90s to 16% today.

Another bright spot of early addict activism was the work of Howard Josepher, a former heroin addict of the beat era. He had been among the first graduates of Phoenix House and later directed one of its residential programs. In 1988, he founded ARRIVE, a program to teach ex-offenders who had recently come out of prison about HIV and AIDS, which soon became much more than that.

Josepher realized that Phoenix House’s tough, confrontational approach wasn’t going to be useful in HIV prevention. Something much more welcoming was needed to get people who were just out of prison interested in attending a program focused on AIDS. Since they weren’t required to attend, honey was going to be far more useful than vinegar in getting them in the door and keeping them engaged.

The lure would also be that those who graduated the program could get jobs as outreach workers, often at ARRIVE itself—and that they’d have a place where they were welcomed and respected. Crucially, people didn’t need to stop using drugs in order to participate. Lots of active users just out of prison who were not interested in staying drug-free were willing to attend a program that could provide employment and didn’t require or even focus on abstinence.

For many, the certificate they received upon graduation represented the first voluntary course they’d ever completed. Today, more than 9,500 people have graduated, many going on to become leaders in New York’s AIDS and addiction programs. Twenty years later, Josepher’s organization, Exponents Inc., is still going strong.

When ARRIVE began, the idea of having active and recovering users in the same program was seen as untenable, practically blasphemous. But soon, ARRIVE found that the mix was actually therapeutic: often, the active users would cut down or quit because they were inspired by those who were abstinent. And even if they didn’t, a study showed that they reduced their HIV-risk behaviors.

Even among people recovering from addiction, the drunks looked down on the junkies and the junkies despised the drunks.

But Josepher wasn’t content to simply provide jobs and training. He saw that political action was needed as well. And so ARRIVE soon began turning up at AIDS demonstrations or doing their own street actions, bringing dozens of users and ex-users to call for change.

Of course, I don’t mean to imply that ARRIVE was the only face of addict or user activism in New York: There was also Housing Works, which grew out of ACT UP, a group called Stand Up Harlem and several others that rose and fell quickly for different reasons. My own relationship with these organizations was complicated: As a journalist, I had to keep my distance, but I also wanted to help make change. This led to a great deal of agonizing on my part over what I could and could not do, at a time when journalism itself was changing its notions of “objectivity” and “advocacy.” 

During this period, I also learned about the enormous challenges such advocates faced, challenges that went beyond the stigma and hatred experienced by gay people. These related to the facts about drug use and addiction and made even the question of “coming out” much more complicated.

Basically, most drug users were not addicts—so they didn’t care about the issue much. Sure, you had avid marijuana smokers who identified themselves as such, but this group often disdained “hard drug” users, particularly injectors. Cocaine and heroin addicts, of course, had their own problems. And then there were the conflicts among addicts. Even among people who identified themselves as recovering from addiction, the drunks looked down on the junkies and the junkies despised the drunks. Let’s not even get into the debates over that type of language and what people involved in drug taking should be called.

There was also the split between active and recovering people. Active addicts were often too dysfunctional to sustain activism without significant support. People in early recovery either didn’t feel safe around them or were too busy with their own recovery to become activists—outside of the oases of harm reduction provided by programs like ARRIVE and needle exchanges.

To make matters worse, those who were beyond early recovery often wanted to put the past in the past—or thought that 12-step anonymity meant no activism related to addiction. Finally, there are the deep divisions of race and class faced by all activism, but made even more acute in relation to drugs and addiction. And, of course, the problem of relapse.

Once you did get beyond all that and found a few people who agreed that something needed to be done, there were arguments over policy and strategy. Should the focus be needles or treatment? What about legalization and decriminalization? If we call for more money to spend on our issues, where should it go?

These conflicts, divisions and arguments have meant that there are still very few “out” users and former users organized politically around addiction to this day. The groups that do exist, like Faces and Voices of Recovery (FAVOR), do important work, even if I often wish they would take bolder and less conventional stands.

And while the urgency of the AIDS crisis has waned with the development of effective treatment and prevention—interventions that would have come far later or never at all without the activism that did occur—drug policy remains harmful and oppressive.

For example, if there were an antidote to HIV—like naloxone, the antidote that can reverse opioid overdose and save lives—that was nontoxic but available only by prescription, would ACT UP have let the FDA get away without changing the law pronto? I don’t think so. Drug users, ex-users and people who care for them need to think long and hard about why even these obvious and non-radical changes aren’t being demanded.

Having experienced them firsthand, I don’t minimize the obstacles: They need to be taken seriously, studied and understood in the context of other, related movements that have faced them, such as activists with mental illness and disabilities. But as ACT UP proved, a small group of committed people can absolutely change the world

Maia Szalavitz is a columnist at The Fix. She is also a health reporter at Time magazine online, and co-author, with Bruce Perry, of Born for Love: Why Empathy Is Essential—and Endangered (Morrow, 2010), and author of Help at Any Cost: How the Troubled-Teen Industry Cons Parents and Hurts Kids (Riverhead, 2006)..

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Maia Szalavitz is an author and journalist working at the intersection of brain, culture and behavior.  She has reported for Time magazine online, and is the co-author, with Bruce Perry, of Born for Love: Why Empathy Is Essential—and Endangered, and author of Help at Any Cost: How the Troubled-Teen Industry Cons Parents and Hurts Kids. You can find her on Linkedin and  Twitter.