“In the end, when we don’t stand up and speak out, we hide behind our recoveries, we sustain the most harmful myth about the disease – that it is hopeless.”

–William Cope Moyers, author of “Broken: My Story of Addiction and Redemption.”
                
Dorian Grey Parker – doctor of divinity, licensed clinician – lived on the streets of Hartford, Conn., most of his 42 years, addicted to alcohol and cocaine. He’s not proud of that. Yet last September, he was among more than 2,500 recovering alcoholics and drug addicts, surrounded by supporters, who marched in his hometown Recovery Walk, a radical, in-your-face display by people struggling with one of the most invisible ailments in America.

Determined to sink the message of successful recovery into the heart of the American consciousness, a new advocacy movement is urging people to go public with their recovery stories. This small but growing group of activists are hoping to end discrimination and drum up moral and financial support by modeling their efforts after the public awareness campaigns that pushed breast cancer and AIDS onto the country’s radar screen.

For a community of people — believed to number in the millions — who have learned to live with their addictions, overcoming an age-old silence is the next big challenge.

“We’ve got to get the message out there,” says Parker, who has opened a recovery house for other addicts since he got clean eight years ago. “I show up for the newcomers, who are finding hope in seeing people with multiple years of recovery, and I come out for the clueless. There is such a moral stigma attached to this disease. It all comes from not understanding, but we can change that.”

The emerging movement to bring addiction out of the basements and anonymous meeting halls where most self-help groups gather isn’t led by a single person or organization. It’s an amorphous, evolving school of thought bubbling up from national, state and local recovery groups, all part of a sprawling underground network as diverse as addiction itself. There are now recovery support meetings for Native Americans, African Americans, women, Mormons, Jews, Buddhists, Christians, pagans, bikers, gays and lesbians, artists, pharmacists, couples, seniors, nuns and Spanish speakers, among others. They are united in their goal to make alcohol and drug addiction a public health issue.

Instead of being viewed as a moral weakness, activists argue, alcoholism and drug addiction should be considered a chronic disease that can be treated just like asthma or cancer.

“I still don’t think the general public believes that an addict or alcoholic ever gets well,” says Phillip Valentine, executive director of Connecticut Community for Addiction Recovery, a state-based advocacy and support group that organized the first Recovery Walk six years ago. “Many, many people have long-term, sustained sobriety and you may not know about it. We need to put a face on recovery so people won’t be so afraid or fearful or angry at it. It’s not a hopeless condition.”

One obstacle to actively reaching out to those in recovery: Nobody really knows exactly how many Americans have achieved it.

Mark Willenbring, director of the Treatment and Recovery Research Division at the National Institute on Alcohol Abuse and Alcoholism in Bethesda, Md., puts the number of Americans in recovery from alcohol abuse alone at 9.2 million, based on probability samples. But there is not even a guess at the number of former drug addicts in stable remission, not to mention alcoholics who also abuse drugs.

“It’s a crying shame we don’t know,” says Alexandre Laudet, director of the Center for the Study of Addictions and Recovery at the National Development and Research Institutes in New York, which plans to conduct a national survey to get a better grip on the total.

“The problem is there are multiple databases everywhere and you can search and slice them three ways to Sunday in terms of how many people have used drugs and alcohol in the past month, year, by age, gender and race, but we have no idea how many people are in recovery,” says Laudet. “I know people … in their 60s and 70s who have been in recovery 30 or 40 years.”

A clearer picture of recovery successes would help policymakers, treatment centers and researchers improve treatment and the recovery process and learn how to deal with the long-term consequences often related to substance abuse – health issues, such as HIV/AIDS, cardiovascular disease, liver and kidney disease, and emotional or social problems, such as job loss and divorce.

Complicating matters is the fact that recovery is essentially individual growth, very difficult to assess statistically. How do you measure success for an ailment that has no cure? Add to that the constant danger of backsliding; research has shown that half of those in recovery experience at least one relapse. Although a risk may diminish over time, it remains a reality. One of the very few long-term studies on drug users – a 33-year follow-up of narcotics addicts published in the Archives of General Psychiatry in 2001 – found that 25 percent of a large sample of opiate users relapsed after 15 years of abstinence.

Still, as a general rule of thumb, most treatment experts view recovery in the same terms as cancer: Five years of little or no alcohol or drug use and you can start to breath easy.

“Recovery is not only someone who is no longer using alcohol or drugs, it’s someone who’s got on with life so they are once again part of the community,” says Pat Taylor, executive director of Faces & Voices of Recovery, a five-year-old nonprofit based in Washington, D.C., that lobbies to make recovery a public issue. “It’s not just that you’re sober, but that you’ve gotten your life on track.”

As part of its national campaign, the group has issued a 45-minute video to help people tell their recovery stories. There are now radio shows, web casts, art shows, bookstores, a film festival and a proposed cable TV channel devoted to recovery. There’s even a recovery cookbook: “The Sober Kitchen: Recipes and Advice for a Lifetime of Sobriety” by Elizabeth Scott, a professional chef.

William Cope Moyers, the son of famed broadcaster and author Bill Moyers, unwittingly became the unofficial poster boy for the movement when he started speaking publicly in 1996 about his own alcohol and cocaine addictions. An award-winning journalist for 15 years with CNN and newspapers around the world, Moyers first experimented with marijuana as a teenager in the 1970s. Like many college kids, he was into binge drinking on weekends. But drinking turned into hard drug use and by the time he was 30, he says, he was addicted to crack cocaine.

“I was working for Newsday on Long Island and I was a very good reporter, but neither my employer nor my wife nor my church had any idea that I was living on the streets of New York as a crack addict,” Moyer says. “Alcoholics and addicts are very good at covering their tracks. I always tell people in early recovery that if you invest as much time in your recovery as you invested in your use, you’re going to be OK. I hit bottom in August 1989 in a crack house in Harlem after an eight-day binge on cocaine."

Moyers is now vice president for external affairs for the Hazelden Foundation, a drug rehabilitation center in Minnesota where he was once a patient. He travels the country, drawing attention to the need for more treatment facilities, money to access them and the importance of coming out of the recovery closet.

“My first public speech was to a Rotary club in St. Paul and I got up thinking I’d speak from an authority’s position as an employee of Hazelden,” says Moyers, who relapsed three times before achieving long-term recovery 11 years ago. “I rattled off all these statistics and began to notice people dozing off. It was a tough crowd. So I chucked my speech and told them, ‘I want to talk about this disease I have.’ Everybody sort of sat up. That’s when I learned the real power in the authenticity of experiences of people like me. Nobody can impeach my credibility when it comes to being a recovering drug addict. I made it despite myself. For that I am grateful and I want to give back.”

Moyers says his goal now is to change public policy. His memoir will be published by Viking Publishers in September. But he says other stories need to be told and heard.

For those who choose to keep their stories to themselves, there’s good reason. Not only is addiction painful and embarrassing to talk about, publicizing it can threaten jobs and change relationships.

Recovery advocates do caution that going public is not for everyone. The National Council on Alcoholism and Drug Dependence, one of the oldest advocacy groups in the country, suggests that people have at least two years of sobriety under their belt first. Bill White, a senior research consultant at Chestnut Health Systems and author of the seminal 1998 book, “Slaying the Dragon: The History of Addiction Treatment and Recovery in America,” says “… as much as a positive effect it can have, people do make sacrifices when they do this kind of stuff. They face the same adversity that the first gays and lesbians who came out of the closest did. People lose jobs, families can fall apart over it.”

The numbers back that up. One quarter of people in recovery report they had been denied a job or promotion or had trouble getting insurance; and four in 10 said they experienced shame or social embarrassment, according to a 2001 national survey called “The Face of Recovery.” In the same survey, 20 percent feared being fired or facing discrimination at work and nearly 40 percent were very or fairly concerned that other people would find out about their problem.

People in recovery routinely encounter public and private policies that were created as a deterrent or punishment to alcohol and drug abuse. On paper, the penalties might make sense; in practice, they often are counterproductive to people trying to put their addictions behind them. Those with alcohol or other drug diseases pay higher insurance deductibles and co-payments for treatment, get fewer visits and days of coverage, and have more restrictions on the amount they can spend, even when their insurance benefits cover treatment – if they are insured at all, according to Join Together, a project of Boston University School of Public Health that formed a national policy panel in 2002 to address the discrimination issues. The panel found that the Americans with Disabilities Act is applied very narrowly in these cases and that employees who seek treatment are frequently fired before they can get help.

And while many people with drug convictions leave jail or prison with substance abuse problems, federal laws ban them from receiving welfare or food stamps to support themselves while they get treatment. Unless they complete a treatment program, they are banned from public housing and receiving federal financial aid for a period of time, making it nearly impossible for them to re-establish themselves in society. Most states include substance abuse treatment in their mental health benefit laws, but 13 states cover only treatment for alcoholism.

There have been strides in recovery rights. Advocates celebrated last year when Congress partially lifted a ban on financial aid that prevented more than 100,000 students with drug convictions on their records from receiving loans, grants, scholarships and work study opportunities. Recovery advocacy groups lobbied for years to lift the ban, arguing that those convicted of murder were entitled to financial aid, but people with drug records were not.

There’s another reason why people in recovery tend to stay under wraps — the tradition of anonymity.

Promoting a low profile is an effective way to encourage people to seek out help and protect them from discrimination and scrutiny. It also preserves the integrity of self-help groups like Alcoholics Anonymous (AA), the largest of its kind with nearly 56,000 groups in the United States and Canada — and very strict rules on members speaking in public. Four of the 12 traditions that outline how AA groups and members should operate stress the importance of anonymity. Tradition 12 drives it home the hardest, calling anonymity the “spiritual foundation” of all the traditions, putting the common good above personal aims.

The group treasures its anonymity tradition so much that staff positions within its headquarters rotate every two years, partly so no one becomes comfortable as a spokesman for the organization. As for its members, they can speak as recovering alcoholics on radio, TV and Internet interviews, but not as AA followers. They can only speak as AA members if their names and faces aren’t revealed.

“We’re not a secret society,” says Irene K., a staff member at AA’s General Service Office in New York who, like the other 10 staff members there, insists on not using her last name. “We don’t want to be. We want to be able to go out into the world and speak to classrooms, judges, nursing homes, defense attorneys; to tell them, ‘This is my story. I’m an alcoholic.’ … We’re delighted to let other folks know we exist. But we have a public information commitment to do it within the bounds of the 12 Traditions.”

Moyers, who chronicles his involvement with AA and one of its self-help sisters, Narcotics Anonymous, in his new book, is braced for a backlash. While he never has acknowledged his participation in 12-Step programs in his speeches, Moyers says he couldn’t avoid it in his autobiography.

“It’s a disservice if I don’t tell people how I got well,” says Moyers, who still attends a 12-Step group in St. Paul at least once a week and on the road when he travels. “I embrace and live a life of recovery grounded in the 12 Steps. I don’t ever reveal what is said in meetings. I have the utmost respect for members of the 12-Step community whose perspectives on the anonymity issue differ from mine.

“This is a very contentious issue and I respect both sides of the debate,” he says, “but I will tell you that I believe this misunderstanding of the traditions has made it very difficult for those of us in advocacy to mount a sustained and successful effort.”

“This whole business of anonymity is where the thorn is,” says Robyn Leary, who hosts a weekly radio show called “Recovery Talk” on WDFH-FM in New York’s Hudson Valley. Leary gives her guests the option of using their names.

“It’s not a matter of insisting that everyone go public,” says Leary, who has organized an “Under the Influence” film festival. “It’s a voluntary calling. I do think anonymity is going to keep people in recovery in the basement of churches. It’s going to prevent more and more people from getting treatment.

“If you’re a member of the 21st century, it’s a matter of being socially responsible,” Leary says. “If you personally are not in recovery, I can prove that someone you love is. A new generation needs to learn that there’s only one thing recovering alcoholics can’t do – and that’s drink.”

(Jodi Mailander Farrell is a reporter for the Miami Herald.)

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