Defining Harm Reduction: Three Experts Speak

(This article ran in Body Positive, April 1997)

by Dylan Foley

In 1990 Joyce Rivera was an ethnographer, studying the culture of the drug sellers in the Bronx. Working with members of the community, Rivera started an underground needle exchange to try to prevent the spread of HIV and AIDS among Mott Haven's injection drug users. The theory behind Rivera's work was and is harm reduction, which is an attempt to educate people in a non-judgmental manner on how to change risky behavior that could lead to HIV infection.

The mainstream press has written about harm reduction, but it rarely writes about anything other than condom distribution and needle exchanges. The news articles deal more with the controversy over needle exchanges and parents' objections to condoms in the schools. In order to obtain a broader definition of harm reduction in AIDS prevention, Body Positive talked to Rivera and two other long-term harm reduction advocates -- Edith Springer, clinical director of the New York Peer AIDS Education Coalition (NYPAEC), and Allan Clear of the Harm Reduction Coalition. The aim of this article is to open a dialogue on the definition of harm reduction and how it is used in the battle to prevent HIV and to help those living with AIDS.

"Harm reduction is a way of life," says Springer, whose Manhattan-based NYPAEC trains street youth to do peer-based AIDS prevention. "It's a way of reducing harm or risk in any practice in which you're involved."

She set up her group seven years ago, recruiting present and former male and female sex workers to teach their peers about safe sex and safe injection practices. With 26 peer educators, more than 20,000 outreach contacts were made in 1996 alone. Springer and her educators teach AIDS prevention in a neutral fashion, without judging or parenting their clients. "People need to know they are deserving of respect, dignity, and support," she said. A social worker by training, she discovered in dealing with her own drug use more than a decade ago how brutal society could be to drug users. "I was treated like garbage when I looked for help. With harm reduction, we believe in the intelligence and expertise of clients to make decisions in their own lives."

Harm Reduction: A European Import

The roots of harm reduction as a unified theory came from Europe. "I first heard about harm reduction in 1987," says Springer. "We'd been using bleach to clean syringes since 1985, but we didn't have the words for harm reduction then."

Harm reduction started in Europe in 1985 when injection drug users [IDUs] in Amsterdam protested the refusal of pharmacists to sell syringes to drug users. According to Springer, the theory spread to Europe and reached Liverpool, where IDUs were being taught safe injection practices. Springer went to Europe in 1988 and studied harm reduction in practice.

"When I came back, I gave a speech in Delaware," says Springer. "I was terrified I was going to be killed. Instead, I got a standing ovation. I'd thought I'd lost 10 years of my life, through drugs and prison, but that was my Ph.D."

For Springer, harm reduction includes all aspects of life. "It's how you spend money, what you eat, how you take care of yourself and how you take care of others. It's not just about drugs. For example, when I'm working with a crack user, one of the problems is that they don't eat enough. It turns out they might only have one full meal a week. So I say, 'Why don't you make sure you have one meal a day?' You change slowly -- do a little bit that's comfortable, then build on it later. Change takes time, and in harm reduction the goal is the prevention of the spread of AIDS. A person learns to be a responsible drug user, or a responsible prostitute."

"The 12-step moralistic model is different than harm reduction -- it's a perfectionist model -- you're all good or you're all bad. It's a 'leap into health' thing. But very few people can leap." Springer argued that drug treatment people are "horribly brainwashed" on harm reduction. "It is not harm reduction versus abstinence. Harm reduction can include abstinence." Springer said that sometimes she is approached by people who ask her, "Now that I've learned about harm reduction, is it okay for me to start using drugs?" Springer said that her response is, "If you are in recovery and happy, why start using drugs?"

Accepting That Drug Use Exists

Allan Clear, a photographer and a veteran of a 12-step program, is the executive director of the Harm Reduction Coalition (HRC), a group with offices in New York and Oakland that helps communities organize harm reduction programs nationwide. Clear participated in ACT UP's illegal underground needle exchanges in 1990. Eventually, he ran the Lower East Side Harm Reduction Center, which included a needle exchange that New York State legalized in 1992.

"Harm reduction accepts that drug use exists," he says. "It's how to minimize harm for the individual and the community. The end point of drug treatment is whether a person has stopped using drugs. We don't do that. We're concerned with how their well-being has changed."

The HRC was set up to provide support and advocacy for harm reduction programs. Clear explains, "We have trainings in specific areas, such as harm reduction in women's issues or pain management." Trainings are held in how to set up needle exchange programs, legal as well as underground. The HRC also provides resources and materials on harm reduction methods, and runs an bi-annual national harm reduction conference.

The barriers to needle exchanges and other forms of harm reduction are still very strong. "There is a conservative political climate right now," Clear points out. "In New Jersey, Governor Christie Whitman is ideologically opposed to needle exchange, and has promised to prosecute the programs. She is going against the advice of her own AIDS advisor." In addition to outright opposition, there is little political leadership to support needle exchanges on the state and local levels, adds Clear. It's unpopular to take positions that are seen as "soft" on drugs.

In 1992, the U.S. Congress passed a ban that prohibits the use of federal funding in needle exchanges. Donna Shalala, the U.S. Secretary of Health and Human Services, recently released a report which says that needle exchanges do not increase drug addiction and are credited with reducing the spread of AIDS. In February 1997, The New York Times published an editorial persuading the Clinton Administration to lift the federal ban on needle exchange funding.

Returning Control to the Individual

After two years of running an underground exchange, Joyce Rivera and her colleagues in the Bronx were granted a state waiver, allowing them to legally distribute needles. The St. Ann's Corner of Harm Reduction, which is named after the original needle exchange site, is a series of offices on Cypress Avenue in the Bronx. The interview with Rivera took place in the room where acupuncture is performed. Next door, participants were holding a group therapy session.

"Harm reduction tries to return control to the individual and the community," says Rivera. "You look at where harm is generated . . . it's a holistic idea. Society says that drug use is a disease, and that it must be cured by abstinence. Harm reduction looks at social policy, at the individual in the social realm. With access to methadone, clean syringes, and condoms, people have control over the environment in which they are living, and responsibility over their own lives."

Rivera argues that harm reduction provides the ultimate balance -- the greatest capacity for individuals to have responsibility for themselves, and the responsibility of the state to provide good conditions -- safe housing, better education and job training.

The state has abdicated its role in the poorest communities, like Mott Haven, she notes. "These communities are laboratories in deprivation. The government should create minimum standards for these people, but they don't. They don't have a shot at security needed for their survival. In these communities, drugs provide economic opportunity and a way of coping. The government marginalizes people into a black hole, death, or warehouses them in prison."

"The government policy of restricting syringe distribution and access to methadone has had public consequences -- HIV in the drug population. Trying to create abstinence is unrealistic -- it is unrealistic to say that people aren't going to use drugs. It's like telling people not to have sex. Like consensual sex, drug use should be up to the individual."

State policy on drugs is ignorant of the culture of the local communities. "It's far better to have culturally-appropriate programs," she says. "Right now, HIV is racing through these communities and the drug penalties are not changing personal behavior."

Like Springer, Rivera argues for changing attitudes, to admit the existence of responsible drug users, and to reintegrate them into society.

The Future of Harm Reduction

"At St. Ann's, harm reduction is at a community level," says Rivera of her program. "This is where people can change their behavior so they are responsible for their health and well-being. Information and knowledge equals safety. The harm reduction center becomes a sanctuary where people can take on the frightening experience of responsibility." Participants are also hooked up with social services.

Rivera notes that her group and other programs are hampered by funding problems. "We are experiencing flatline [stagnant] funding or funding cuts, and on top of that, there are more monitoring requirements." For St. Ann's, more money is being spent filing reports, and there is no money for more staff. "The only way to talk about drug use is to include talk about bad government policy," she says.

Rivera sees the future of harm reduction as being linked directly to drug policy reform. "The drug reform movement is in its adolescence right now, but it's gaining momentum and strength. Needle exchange and methadone are directly affected by the drug war ideology. All of us in harm reduction have to get involved in drug reform."

Edith Springer sees an exploding demand for harm reduction, and she has traveled around the country giving harm reduction workshops. "A few nights ago, there were seven messages on my machine asking for training information," she says. "There's a demand for it in every social service area. As we approach the millennium, people are hungry for a spiritual force. Harm reduction isn't a higher power, it isn't God, but it is a spiritual power -- love, respect and dignity."

Springer urges that harm reduction programs be kept small. "Don't try to become a huge bureaucracy, or it will turn into your worst nightmare." Noting that even the Bronx is different from Brooklyn, she says that it's necessary to have small community groups all over.

Finally, Springer urges integrity, and wariness of funding sources. "Stand on your ethics," she advises, "or you're a whore. At NYPAEC, we don't whore. Money isn't everything."

For Allan Clear, the future of the harm reduction movement involves a variety of things. "We must educate doctors so that they learn how to deal with drug users properly. Many medical providers address a person's drug use, not what's ailing the person. We must create more safe spaces, like needle exchanges and harm reduction programs, where drug users will be comfortable and have all the information they need. We must also continue to listen to drug users, to find out what they need for themselves."

To encourage more needle exchanges in New York State, Clear says, "The New York State AIDS Institute's waivering to allow groups to give out syringes must cease." The amount of paperwork stops groups and institutions, such as hospitals, from setting up exchanges.

Finally, Clear believes it is necessary that harm reduction supporters form alliances with other reform movements. "The future of harm reduction is to embrace other reform groups such as welfare, health care, and immigration reform. We need to work with groups that advocate for people affected by the reduction in the social safety net."

Dylan Foley is a freelance writer who volunteered with the Lower East Side Needle Exchange for two years.

AIDS education for teen prostitutes

Here is an article I did 15 years ago on heroic efforts by the legendary harm-reduction educator Edith Springer to bring young prostitutes in New York City into the AIDS prevention field.

Some of the the NYPAEC outreach workers were able to stop prostituting themselves. One wound up becoming a salesman for a pie company. Others were not so luck. The gregarious Michael Links, a charming hustler who used to work the bathrooms at the Port Authority Bus Terminal, died of a crack-induced seizure. Luscious, a transvestite hooker who useed to work the Meat Packing District, was later murdered by a john.

The Progressive

February 1, 1996

By Dylan Foley

Michael Links started hustling and prostituting himself on the Manhattan piers when he was fourteen to support his crack habit. Five years ago, at the age of nineteen, he was recruited to do outreach work in AIDS prevention education among his fellow hustlers on the prostitution strolls.

The group that recruited him, the New York Peer AIDS Education Coalition (NYPAEC), was started in 1990 to reach an estimated 10,000 to 20,000 teenage hustlers, runaways, and prostitutes in New York City. Working out of a donated church space, social worker Edith Springer, the NYPAEC founder, offered stipends of $20 a week and free meals to her twelve original peer educators. "We are educators - we show them choices, but we don't tell them what the goals are," says Springer. "We say to our clients, `You are great and you need to survive. Let us show you how to do things safely.'" NYPAEC provides safe-sex information and condoms for prostitutes and other teenagers at risk of contracting HIV, and promotes safe drug use, including clean needles.

At present, there are twenty-four outreach workers, men and women ranging in age from sixteen to twenty-six. They include whites, African Americans, Latinos, straights, gays, and transvestites. Many of them are still hustling, and some are active drug users. Two of the group's original outreach workers died of AIDS, and some current members are HIV-positive.

Michael Links has been doing peer education for NYPAEC for five years. His experience with the group has led to a job as a caseworker for a community clinic, though he still hustles part-time. Besides safe-sex information, he gives other advice: "I tell people not to go with a `date' who is drunk or drugged, and not to work while you're high."

Luscious is an articulate, twenty-year-old male prostitute who is an outreach worker NYPAEC. "I started turning tricks when I was thirteen," he said. "I became a peer educator because I see so many HIV-infected people on the stroll. Even now, there are people who don't know how to use condoms." He says many of his male clients wear their wedding rings when they pick him up.

Luscious works in drag in Manhattan's meatpacking district. He gives out condoms to his fellow prostitutes, as well as others. "When I get on the subway, I act real loud and carry my condoms where they can be seen. Young people ask for them."

Besides training other outreach workers, NYPAEC also provides group support sessions for them. "In group, I feel that I can discuss anything because people have been through everything. I feel like I am supported 110 percent," says Luscious.

Though NYPAEC has three full-time staff, all decisions are made by vote among all the members. The peer educators are still paid only $20 a week and are required to make twenty outreach contacts a week. They also help run the NYPAEC office, which is near the meatpacking district.

Samuel "Poely" Johnson III, twenty-two, has been a peer educator and outreach worker for two years. He ran away from a bad foster-care situation when he was eighteen. "I was eating out of garbage cans and living under train platforms," he says.

"The work is exhilarating and rewarding, but can be depressing," says Poely. "I do a lot of suicide interventions. Often, people need someone to talk to more than anything else." Poely has plans to start an HIV/AIDS chat room for teens on the Internet.

NYPAEC has found that funding is hard to come by for a program that uses former and current hustlers to do its outreach. "The head of a major foundation told me, `I think the work you are doing is great, but my foundation is too conservative to fund you,"' NYPAEC founder Springer says.

"A very high proportion of the kids we work with have HIV. They have a real sense of fatalism - they know they are going to die because they are constantly exposed to death through AIDS and violence. The powers that be don't really give a damn about them."