Listening to fighters of demons

By Robert Landauer – editorial columnist for The Oregonian, August 31, 1999. Not available elsewhere online.

People don’t advertise frailties that the public fears. So anonymity usually accompanies treatment of mental illness and drug/alcohol addictions.

The privacy is mostly good, as in 12-step programs. But not always. Anonymity robs us of first-person testimony about what aids or blocks recovery.

Movements to furnish that testimony took stage in Portland last week.

Few of us trust drunks, druggies or anyone foundering in a mental -health crisis. The mentally ill appear unhinged from reality, and the addict will say anything to manipulate us.

Still, ideas from people who suffer years of illness or addiction, enter treatment, persevere, take their medicines and stay clean and sober can ventilate our minds and redirect our actions. For example, Portlanders who described their thoughts during psychotic episodes helped police create effective Crisis Intervention Teams.

Yet most of what we hear about addicts and the mentally ill comes from social workers, police, judges, doctors and family members. That feeds the illusion that addicts and the mentally ill can’t contribute useful ideas for their own treatment and for public policy.

It is admirable when those in recovery speak out for themselves.

Their collective public face could encourage some of the ill and addicted not yet accepting help to believe that they can reconnect to the world.

That was happening here as the National Summit of Mental Health Consumers and Survivors progressed over four days “toward building a united national advocacy initiative” to reflect the experience and beliefs of consumers of mental health services.

Their issues are thorny: defining what constitutes informed consent; pros and cons of the right to refuse treatment; involuntary residential and outpatient commitment; insurance reforms, including parity of coverage for treatable mental illnesses and community-support options in housing, jobs and family assistance.

The sessions concentrated on brainstorming. Action plans to fit national, state and local needs will follow.

The Recovery Association Project also engaged in something of a coming out here last week. Its members, recovering addicts in Portland, want to help people like themselves speak out effectively on substance-abuse issues.

The group has worked since last fall on Multnomah County task forces dealing with heroin overdoses and drug-related hepatitis C. Members — who have broken booze, heroin, cocaine or designer-drug habits — find behind-the-scenes work insufficient.

Five who spoke with editors said they worry that the privacy that most addicts in recovery value has an unintended effect. It works against encouraging others to reach for help.

“The story on the street is that once you’re an addict, you’ll always be an addict, a junkie,” a recovering heroin addict told us. Most of the public believes that, too, she added.

The others chimed in that they are proof that treatment can work — perhaps not the first, second or third time, but eventually. They are going public (several appear in public service announcements) because they believe their visibility is essential to help remove the “stigma of hopelessness” that enshrouds addiction diseases.

We see the emergence of specialized consumer movements. They differ from the inner-directed support-group or lobbying workshops one usually finds among factions with little power.

Consumer movements usually rely on mass appeal. They encourage us to buy environmentally friendly products, boycott unsafe goods or refuse to do business with companies or countries that do objectionable things like killing seal pups or exploiting child labor.

The groups discussed here don’t have mass appeal. They are trying to give credible voice to people whom many Americans prefer to ignore.

Their goals are to battle misinformation and misimpressions that make recovery tougher for individuals and more expensive for society.

All they ask is that we listen to the survivors of these diseases and weigh their ideas.

That seems sane and sober.