I had a dream several years ago:
I was sitting in a circle with others with lived experience of extreme mental states. (a term we prefer to mental illness). We might have been in a self-help center. We were intensely sharing, listening, commenting, supporting and being with each other as we have been learning is so vital. Gradually I started to notice that all around us the “normals” were running about helter skelter, looking wilder and wilder and more and more distracted. From time to time they would stop and stare. Then they started to ask us what we were doing to stay so centered and calm when they were feeling so distracted by fear, doubt and insecurity. We said we were having our weekly self-help group. They wanted to know what drugs we were taking, and we shared that actually most of us were off all drugs and medication. Then they brought TV cameras and said they wanted to film us so they could learn what our program was. We welcomed their filming us, but we said they might be disappointed to learn that we are not practicing a program but in fact were just practicing self-help and mutual support, without a program. We also said that we did not have a clear leader, because we all had internalized the comfort agreement, which we had constructed years before at the start of our group. They just shook their heads in disbelief because they had never heard of any group getting together without a clear leader, without a program, and with medications or drugs.
The Mental Health Crisis in Our Society: I believe that dream was predictive of the world we live in today. We are experiencing a mental health crisis in this country. As Robert Whitaker pointed out in Anatomy of an Epidemic, the use of psychiatric drugs has skyrocketed in the US in the last 20 years. Far from bringing relief, this over-reliance on medications and the medical model have been accompanied by a staggering 300% increase in the rate of persons being declared psychiatrically disabled. We are witnessing and ever greater widening of the diagnosing of behaviors once thought to be within normal range, in the impending release of DSM V. This new bible of the mental health system will contain a new category of prepsychosis. This diagnosis could potentially be given to everyone, since given sufficient trauma, anyone can experience extreme mental states, which are called psychotic. In fact, it is often necessary to experience extreme mental states to reorganize ones sense of self at a deep level (Perry, 1989). By labeling these states as prepsychotic, they will be treated with medications, which most likely will interrupt a potential growth experience. We badly need a new paradigm and new approach to emotional distress. I believe our consumer/survivor/ex-patient movement has developed the understanding and the tools needed to save all our people: both those of us labeled and those not yet labeled. We have discovered that just as my dream described, we can recover our lives, our humanity, and our sense of purpose through self-help and mutual support.
I and many people with lived experience have been establishing and participating in these self-help groups for 30-40 years. My first experience of such a group was in 1978, with the Mental Patient Liberation Front, in Boston. It was at my first MPLF meeting that I met two of my life-long mentors in this movement, Judi Chamberlin and David Oaks. Judi through her example, through her writings, and through her brilliance showed me never to be afraid of anything. She was as fearless as they come. Her book, On Our Own: Ex-patient controlled Alternatives to the Mental Health System, showed me and my generation that we could and in fact had to learn to help each other. Though she did not use the word recovery, she pointed out that our lived experience enables us to help each other in ways that people who have not experienced extreme states cannot understand. This was a principle similar to the AA principle that a fellowship of persons with similar experience can help us recover in ways much more profound than any professional without such experiences could understand. Judi died in Jan. 2011, but I and all in our movement carry her in our hearts every day. Her heart continues to pump energy and hope within our movement. David Oaks has similarly moved mountains for all of us with lived experience. He inspires me every day with his clear vision and outrage at the injustices we suffer. He started the international organization, Mind Freedom, led a hunger strike to demonstrate that the APA could not prove that there is a chemical basis of extreme mental states, builds bridges with the larger disability community, and is working to get the UN Convention on Rights of Persons with Disabilities ratified. David and I did not always see eye to eye. After all, though I served my time in 3 psychiatric hospitals, I went on to become a psychiatrist. But we have come to deeply respect each other and recognize that we both play important roles. His is more as an outside advocate and mine is as an inside advocate.
Our Movement’s Accomplishments: Recently, at a BRSS TACS (Bringing Recovery Services to Scale TAC) leadership conference, Dr. Ron Mandersheid, Executive Director of the National Association of County Behavioral Health and Developmental Disability Directors (NACBHDD), stated that every significant advance in the mental health field in the last 10 years has been conceived of and promoted by persons with lived experience. He cited the advent of recovery as a unifying force. I too am convinced that our movement has played the most significant role in inspiring the field to embrace recovery. I and other persons with lived experience were able to establish recovery as the vision of the New Freedom Commission. This spring, at another BRSS TACS conference on policy development, a senior administrator from Massachusetts stated that stigma and discrimination would only be reduced when persons with lived experience run the mental health system. The appointment of Paolo Delvecchio to Director of the lead government agency on mental health, the Center for Mental Health Services is a move in that important direction. Persons with other disabilities and with addiction disorders have for many years played leading roles in their fields. Another very important accomplishment has been the growing roles for peers in the areas of Services and supports, Training and Education, Evaluation and research, and Policy and planning. I call these contributions: STEPS to recovery.
New Direction for Our Movement: Implementation of Recovery Components through Dialogue: Until recently, our movement has primarily created and run recovery-centers or respite centers which are separate from the system. We have advocated for a mental health system to be run according to the principles of recovery. In 2006, SAMHSA published 10 components of mental health recovery and more recently, released a joint set of recovery principles for substance use disorders and mental health (www.samhsa.gov). However, the lead decision makers in the system have not supported the concept of recovery. In fact, when SAMHSA first tried to release their 10 components of recovery, a senior official at NIMH stated that persons with severe mental health issues will never be self-determining and therefore can never recover. The system has tried to give the appearance of implementing recovery by only hiring peers. These peers, numbering in the thousands, have become frustrated and angry because they are expected to work in an untransformed system. They are told not to share their recovery stories. They are told to keep such strong boundaries that the human touch they can supply is extinguished. When they complain they are reminded that they are at the bottom of the mental health food chain. Until the system transformation to recovery occurs at a much faster rate, peers will continue to be frustrated and feel under valued.
During the last 30 years, parallel to the recovery movement, there has been a dialogue movement. In the US, this movement was started by physicist David Bohm (Bohm, 1996), and organizational development leaders Peter Senge and William Isaacs. These Bohm Dialogues have been used for team building and conflict resolution in business and government. At the same time, In Finland, psychologist Jaakko Seikkula and social scientist Tom Arnkil have applied dialogical principles to therapy (Open Dialogue) and multi-helper teams (Anticipation Dialogues)(Seikkula and Arnkil, 2006). I am in my second year of a course in Open Dialogue taught by Mary Olson, a professor of Social Work at Smith College. I think Open Dialogue can greatly transform clinical practice from symptom management to promotion of recovery.
But to transform the system as a whole, we will need to reach all the players who are presently involved. The major decision makers need to become convinced that Open Dialogue is a valuable clinical approach. There are many providers, administrators and family members who are hungry for a new way to approach these phenomenon, but don’t know what that might be. They therefore cling to the medical model and medications, ineffective though they are. I believe that learning to practice the principles of dialogue in the community, advocates will convince the decision makers that the system would work much better if it was based on the recovery of a full life in the community instead of being locked inside of diagnostic labels and the expectation of life-long illness. In fact, the National Empowerment Center and National Coalition for Mental Health Recovery have been developing dialogical training programs during the last 4 years. Together they form the beginning of a comprehensive set of trainings and consciousness raisings we are calling Dialogical Recovery. They represent a synthesis of the Recovery Components and Dialogical Principles:
1. Introduction to Dialogical Recovery: an introduction to the components of recovery and principles of Dialogue as illustrated in Open Dialogue, Anticipation Dialogues, and Bohm Dialogues. This is a training under development. It will be based on the blogs that I have posted on Mad in America. It will be for anyone who has experienced extreme mental states, their families, their friends, healthcare workers and anyone who has or might in the future come in contact with someone in such a state. In other words, since we believe that anyone can experience extreme mental states, it will be for everyone. For those who wish, this introduction to Dialogical Recovery can be followed by any selection of the other trainings listed below.
2. EmotionalCPR or eCPR: this is training program to teach all members of society how to help each other through emotional distress. It has been developed by 20 persons with lived experience and is primarily based on what we most wanted when we were in crisis. It is also based on a number of other programs, such as crisis counseling and psychological first aid to assist the public after disasters, recovery components which as the basis of mutual assistance, trauma-informed care, and suicide prevention. eCPR is a form of heart-to-heart dialogue, which through Connecting and emPowering restores a person’s vitality. We have trained hundreds of persons representing all stakeholders, in this country, Singapore and Australia.
3. Finding our Voice and Using it in Dialogue: this is a form of empowerment training developed by Judi Chamberlin, Sally Zinman, myself, and many other peers. It is based on 12 P’s of empowerment as demonstrated by effective peer advocates. The most important P is Passion. Those of us who have been effective all agree that a critical internal development in becoming an advocate is learning to transform our anger to passion. Gandhi understood this point very well for he said: “I have learnt through bitter experience the one supreme lesson: to conserve my anger, and as heat conserved is transmuted into energy, even so our anger controlled can be transmuted into a power which can move the world.” The goal of this training has been to develop more peer advocates to play an active role in the formation of public policy. With the resurgence of activity around healthcare reform, the participation of peers will be vital to ensure that the perspective of recovery is embodied in all the new policies and financing implemented.
4. Recovery Dialogues: For the last 4 years, I and staff at Riverside Community Care in Massachusetts have been engaged in a direct application of the Bohm Dialogues in a community mental health center. We now have three monthly recovery dialogues being carried out in three different locations of Riverside CC. A recent testimonial by a director of a clubhouse who attends a recovery dialogue beautifully describes why I feel these are an excellent means to shift the culture of the system to recovery:
“The day was no different than others; a hundred things to do and not enough time to do them. In my rapid step, I said my ‘good mornings’ heading for my office; as I turned the corner I saw Steve Goldman, Riverside Community Care Peer Specialist, preparing the circle of seats. It was in that moment that I stopped; I breathed deep letting out a huge sigh of relief, and a huge smile took over my face. Today we hosted the Recovery Dialogue and I was going to be there. While it may sound simplistic in the concept, discussing recovery, it is so much more. It is an opportunity to leave your hat at the door regardless if you a provider or individual receiving services, a place to actively listen; sometimes challenging your way of thinking or validating the complexity of your experiences. It is a place to share struggles and strategies; honestly and from the heart without judgment. At the end it always gives me a renewed sense of hope that we all are people first and we are truly never alone. We have come so far in seeing the ‘whole person’ in the holistic approach of recovery. Recovery Dialogue is the catalyst needed to evolve our mental health system further and to have participants that are not just those who provide or receive direct services but to those that hold the powers to reform the policies and challenge the archaic systems that still exist.”
We are the Ones We Have Been Waiting For: Those of us with lived experience, here in the US and now around the world have discovered that most mental health professionals have little understanding of what extreme mental states are like. They think those states are a sign of illness. They think that hearing voices and having vivid dreams are symptoms of those illnesses. We who have been through our own recovery know that we are all basically healthy people who have experienced a variety of traumas. We have different constitutions. In fact, every person in this world has a different constitution. Each of us needs to face the tasks of development, which involve finding the best fit between our gifts and the offerings of the world. At times we believe that persons go through extreme mental states in order to reorganize at a deep level. We who have gone through such a recovery of our true life can be guides both individually and collectively in leading the system to a truly recovery-based system as envisioned in the New Freedom Commission. The time is short, and too many of our brothers and sisters are suffering. Let us dialogue together so our society can emerge from the darkness of the trees of neurotransmitters so we can all experience the world of a full and meaningful life.
Bohm,D. (1996). On Dialogue. Routledge Classics, London, England.
Chamberlin,J. (2012). On Our Own. National Empowerment Center, Lawrence, MA.
Perry,J.W. (1989). Far Side of Madness. Spring Publications. . Dallas, TX.
Seikkula, J. and Arnkil, T. (2006). Dialogical Meetings in Social Networks. Karnac, London, England.
Whitaker, R. (2010). Anatomy of an Epidemic. Crown Publishers, New York.
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.