“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 has been published by Viking Publishers. 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.”
From the Robert Wood Johnson
Foundation's "Silent Treatment: Addiction in America" project, produced by
Public Access Journalism LLC.