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.

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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.