Fifteen years ago, a grizzled Vietnam veteran asked for my time when I was the commissioner for both mental health and addictions in Oregon. His name was Corbett Monica, and he told me he was the founder of Dual Diagnosis Anonymous (DDA) in California and hadn’t been able to get anyone very interested in supporting this completely peer designed recovery project. I listened to his story.
He didn’t know it, but 25 years earlier I had been learning about how alcohol and drugs were making life awfully complicated for about half the people I was working with in a community mental health center. And a few years after that, I had directed an NIMH Demonstration Project for people who had both sets of challenges. So I was a pretty receptive audience.
He was himself a person who had been addicted to heroin after he returned from war. He had seen his best friend’s head blown off over there and came back with some definite mental health problems too. Once he got into a pretty solid recovery, he began taking people who had both sets of issues to regular AA and NA meetings.
They weren’t welcome when they tried to talk about their struggles. The mainline 12 step programs rigidly held to a unitary philosophy of only allowing a structured meeting based solely on the 12 steps. And because people often spoke of hearing voices, were sometimes disruptive, sometimes spoke about experiences outside what the meetings considered normal, and other unusual ways of relating, he usually got a call back from one of the leaders saying, in essence, don’t ever bring that guy back.
Corbett knew that the kind of peer support developed in 12 step models was crucial; and he knew that personally from his own struggles for overcoming both addictions and mental health challenges. He wasn’t willing to just leave things at that so he created Dual Diagnosis Anonymous. He added 5 additional “steps” that provided more of a focus on the issues that people with dual problems were facing.
While DDA had some traditional “disease” model features when originally formed in 1996, Corbett himself wrote:
“We must go beyond the tendencies of the Social Model recovery philosophy that claims successful substance abuse treatment necessarily leads to a cessation of mental illness symptoms. We must also go beyond the tendencies of the Medical Model clinical philosophy…”
So the seeds were planted for moving beyond the medical model, but these organizational models change slowly, more slowly than some might wish. But even in the early years, DDA was departing from standard 12 step protocols.
One difference was that because almost everyone who began attending had little or no financial resources to contribute to the expenses of the groups, outside funding was needed, solicited and accepted. This was a violation of one of the “traditions.” I helped with this departure by finding $50,000 and giving it to Corbett, telling him to “go out there and see what you can do.”
He put 80,000 miles on his green Toyota Prius and started meetings in virtually every county in Oregon. Obviously, there was a market for this innovative approach—peer developed and peer driven.
Other departures from standard 12 step meetings were the creation of monthly “Fellowship Gatherings” and, later on, annual social events that have attracted nearly 100 DDA members. With the COVID outbreak, DDA nimbly moved to mostly online meetings using new Zoom features like the chat box for “cross talk”—another departure from 12 step meetings. Peers from Chicago, New York and even St. Petersburg, Russia have been attending.
I would say that peers are voting with their feet—or their laptops now.
What is the magic for people who are almost always marginalized and stigmatized by either or both systems of care? Dr. Raffaella Milani of West London University in the UK puts it this way, based on her study conducted 2 years ago:
What worked for participants is the compassionate, welcoming, inclusive and non-judgmental approach of DDA. It is about peer support, role modelling, hope, building skills… acquiring self-confidence and building a new identity. There is an element of spirituality, in the wider sense of the term.
Yes, AA was originally based on the Disease Model, and “diagnosis “is a clinical term, but we need to take into account the time and the context of when AA was born. The medical approach then was actually quite compassionate, given the fact that addiction was still very much regarded as a moral issue and a sin.
I don’t really see much of the medical model in DDA. Regarding medications, DDAUK does not encourage its attendees to stop their medication, nor do they encourage them to start taking them. What works for people is the possibility to openly discuss their medications. No one is turned away for taking them or not taking them.
Some individuals said that they don’t want to take them because of the way they make them feel; others started to use them and said that they were helping them. What participants reported is that they felt they were able to discuss these issues, something that they couldn’t do in AA and other groups. DDAUK tries to collaborate with other services.
The diagnosis is double faced. It can stigmatise, but as Doyal Smith [the executive director of DDA of Oregon] says, it can also open doors and enable people to get the support they need. Most importantly, one of the quotes from the participants I interviewed was “in DDA you are seen as more than your diagnosis”… and this says it all!
Stories told by members add a special perspective. One member (who gave me permission to write about her here), Nicole Carter, told me of her experience with years of substance use and hearing voices with a belief that she was called by God for special purposes. She lost her jobs and everything she held close. She got diagnosed with schizophrenia, traumatic brain damage, schizoaffective disorder, and bipolar disorder. She was prescribed neuroleptics and stimulants. She went through a variety of side effects like rocking and lethargy.
For a while, she felt at least some of the drugs were helpful in slowing her down. For a period of time, it was worth some of the teasing and stares at her changed mental status and physical demeanor.
But she never felt safe talking about her mental health problems, especially with people in recovery from addictions. Taking medications was one of the things that didn’t go over well. And then she found out about Dual Diagnosis Anonymous. COVID made on-line meetings available all over the US—and even abroad, like St. Petersburg—yes, Russia. In a sense, the adaptation to the digital world made this resource local. All Nicole needed was a hookup to the internet.
There, she felt safe. Nicole says that DDA led her to a different way of thinking—accepting herself and getting support and feedback and talking and greater acceptance. She began to recognize that for her, the “Higher Power” was God.
DDA’s help, and this understanding of her Higher Power, put her on the path to recovery and living life without medications. She began to think about a Higher Power in a way that didn’t feed into her delusions of grandeur.
She believes that this made all the difference for her. She is now speaking openly about her recovery process.
She is working and planning to go off Social Security Disability. She is caring for her one-year old daughter and living, for now, in a women’s residence with others who have become like family and are supportive of her journey. Recently she went off all of her psychiatric medications and is working through the withdrawal effects.
While some object to the use of “diagnosis” in the name of DDA, it’s what Doyal Smith says brings people to the meetings where they can get the supports they need to get lives back instead of spending their lives homeless, in jails, prisons, and being on probation and parole—and worse.
As Dr. Milani indicates, members begin to think very differently about themselves, including their “diagnoses” as the least of the definitions of themselves. They gradually become, like Nicole, aware of their potentials, rethinking their view of spirituality, and regaining a foothold on life. Part of that foothold is having the stamina and hope that the ups and downs of life are worth the challenge of recovery.
This is a story that bears repeating. It is unique and yet not unusual. For those who want a research base to go along with the kind of stories that Nicole tells, the University of West London’s recently published peer-reviewed research paper should be read by every mental health and addictions professional.
For those who will still struggle with the idea of DDA, I would simply add that we can’t logically have it both ways, i.e. we say we support peer empowerment and yet reject this particular manifestation because its name contains that controversial term, “diagnosis.” To me, it is hard to argue with the stories that Nicole tells and the fact that if DDA were replicated in all 50 states, nearly 150,000 people would be attending and moving their lives toward recovery.
On December 10, Dr. Milani will be hosting a webinar on this topic, titled Assessing the Effectiveness of Peer-Led Programs for People with Co-Occurring Disorders.
Dr. Raffaella Margherita Milani, a Chartered Psychologist and Course Leader for Addiction Studies at the University of West London and a member of the British Psychological Society, will present, along with 2 key leaders in the peer-developed and peer-led Dual Diagnosis Anonymous movement in the United Kingdom.
The webinar will be hosted by Mad in America Continuing Education and with 1.0 CE pending for psychologists, social workers, nurses, licensed professional counselors, and marriage/family therapists. In addition to mental health and addictions professionals, all are welcome: advocates, people with lived experiences, family members, program directors, etc.
Free to register! (There is a $20 fee for those who need CE credits.)
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.