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.
The day that we’re finally able to stop the forced drugging of people will be the day that our real work begins. Stopping the drugging will be the easy part. I work in a state hospital that has a capacity of about 250 “patients.” I work in Admissions so I get a chance to talk with and listen to people admitted to our facility. One of the things which overwhelms me is the number of people who’ve been in the system most of their lives and who’ve never worked. People in their twenties, thirties, and forties have been on SSI all of their adult lives and have little or no experience in taking care of themselves. So, first we have to muster an army of people who can help people to taper off of the toxic drugs. Then, we have to develop some method whereby people can learn how to stand on their own two feet and take control of their own lives. Are there enough peers that we can marshal to carry out the things that must be done to help people become self-reliant? I just have a lot of questions about all of this after realizing the magnitude of the situation. We can’t turn our backs on our sisters and brothers who’ve been drugged senseless for years and are almost permanent “patients” in places like the hospital where I work. They view themselves as permanent patients and have little realization that things might be different if the right circumstances fall into place.
Wow. It seems almost inconceivable to me that the harm of psychiatry can be that blatant and that officially nobody sees it as egregious.
I know people like this too Mr Gilbert, in fact I am talking to someone on the phone a lot recently (he lives in a different town to me so I can’t see him face to face very often) and he is pretty much institutionalised at age 32. He entered the system at age 17. But he has come off his drugs and I see him slowly moving forward.
I also did some work in my local mental day centre, the one with the knitting and the pool tournaments, using theatre which reflected their lives in the day centre and discussion. It was when the centre was changing the way it ran and I was employed to do some constultancy with the users on the changes before they happened. People who usually sit and play dominoes came to life and started to very vocally express their concerns about the future of the centre. These were people who had been using the centre for decades.
So I think it is possible for these people to recover but it takes the structures in place to provide the supportive relationships that people need,
Thanks for writing this piece. I especially like your premise “We are the ones we have been waiting for.”
In addition to illustrating how people with lived experience can provide transformational support to one another, it also reminds me of the concept of “locus of control” in wellness.
For me, your premise cuts right to the heart of the matter of “locus of control”. So much of routine medical and psychiatric care removes the percieved center of control from inside the individual and hands it over to “care providers”. Waiting on “meds to kick in” is placing power well outside the individual. To say the least, this is dis-empowering.
I worked with a nurse many years ago who did reserach on patient’s perceived locus of control and their recovery from medical illnesses. People who saw themselves as being in charge of the process had better outcomes than those who believed the “locus of control” was outside of themselves.
Yes. We are the ones we’ve been waiting for.
Thanks for your “lived experience” shared here.
Thank you Gilbert, Yes we indeed need a large number of peers to help people reduce their mind numbing drugs. It is a horror to mankind that this goes on in the name of treatment. I am not totally opposed to medications, but we have to turn this Titantic of a psychopharmaceutical complex around so that other means of treatment and support that are empowering can be developed.
Alice, you really hit the nail on the head. The issue of control and power is central. In fact that army of peers Gilbert wants to engage in detox will only be effective if the paradigm changes to put people back in control of their lives.
This is beautiful, Dan. Yes, we are surely the ones who have so much to teach and share with the world. Thank you.
Alice, I would love the name of the nurse you
Mention and/or the study . In Mass we are looking
For some early indicators of recovery and locus
Of control may be an excellent one. We keep
Returning to agency, efficacy and empowerment
As the most critical determinants of recovery.
I’ll see if I can recall her name. She worked with me in the Portland VA A and D residential treatment program in about 1987. I will email you her name.
I recall she talked about other nursing research about locus of control at the time.
Locus of control has been a useful concept in my work with folks.
I think Martin Harrow has identified locus of control as an indicator of who chose to stop drugs in his outcome studies. Have you been in contact with him?
I am interested in how we help people to find this within themselves- although, as you know, knowing people with lived experience who have recovered is quite powerful.
Thanks for this post.
As you know Dan, the Florida Self Directed Care Program was based on finding alternatives to treatment and recovery. We were tired of a system that was based on the supply meeting the demand instead of the demand meeting the supply. We are able to create our own menu of services instead of those limited by a providers menu. Self Directed care isn’t just a program but a new way of life. Our participants are able to create their recovery plans that are focused on quality of life not just survival. It’s amazing how healing a dose of self direction, self determination and choice is. I suppose if it came in a bottle we wouldn’t have the resistance we find still today to keep the program running. I have always found it confusing that there is such an emphasis on experimenting with numerous medications and yet not many physicians are willing to experiment with taking people off of them. Medications that are used to control behavior instead of treat the symptoms is what has angered me over the years. People say things are changing get over it…considering I have Tardive Dyskinesia its a bit hard to get over knowing that these medications that cause it are still widely used. I’m really weary from years of advocating for cost effective and successful initiatives like Self Directed Care not being more widely accepted unless you go through the expensive costs of having it researched as a best practice program. My greatest fear is that without specifics of self directed care being part of the new health care system that the program will be reduced to only what Medicaid will reimburse…pills and doctors. I appreciate all you have done and continue to do to transform our mental health system to a more individual and family focused system. It is always a pleasure working with you.
Your blog title along made my heart skip a beat with joy, “We are the Ones We Have Been Waiting For” And we keep arriving! Which was so heartening at the weeklong retreat we had the good fortune to attend. So many new Ones are arriving to lend their unique voices, perspectives and strengths to this “unfolding of human potential” movement (not as succinct as recovery movement, but I’m feeling inspired to widen the lens!).
It is so encouraging to hear how long this vanguard of the recovery movement (all the wonderful leaders you mentioned and so many more) has proven the wisdom of lived experience and the compassion of mutual aid are our best medicines and ways to step into our power.
Our Mother Bears are especially excited about joining in your emotional-CPR work and helping families and communities learn how to be and walk with those in extreme states in a way that promotes transformation and change (and not just in the person in the extreme state).
It seems that there have always been those who understood this journey and could support others in this transformative process – be they shamans, philosophers, clergy, elders, husbands, wives, etc.) but we have lost our way in modern society. Perhaps, in part, because the lure of quick fixes for suffering that promise we won’t miss a beat in our unhealthy, breakneck pace of life. But we have missed much more than beats in this tradeoff.
Thank you for your reminder that we are who we have been waiting for and we have been so for centuries upon centuries. That is empowering!
Could you share more about the 12 Ps of empowerment? That might make a great blog in and of itself.
I will gladly share the 12 P’s of empowerment
In another blog.
Are you starting to write in prose?
Because it is an interesting technique
For making one pause
To explore the essential thought
Yes! I just wanted to add this poem. Coincidentally, I just read it this week, before reading your post Dan:
Hopi Elders Statement
“You have been telling people that this is the eleventh hour. Now you must go back and tell people that this is the hour!
And there are things to be considered:
Where are you living?
What are you doing?
What are your relationships?
Are you in right relation?
Where is your water?
Know your Garden.
It is time to speak your truth.
Create your community.
Be good to yourself.
And not look outside of yourself for a leader.
This could be a good time!
There is a river flowing very fast. It is so great and fast that there are those who will be afraid. They will hold on to the shore. They will feel that they are being torn apart, and they will suffer greatly.
Know that the river has its destination.
The elders say that we must let go of the shore, push off into the middle of the river, keep our eyes open, and our heads above the water. See who is in there with you and celebrate.
At this time we are to take nothing personally, least of all, ourselves. For the moment that we do, our spiritual growth comes to a halt.
The time of the lone wolf is over. Gather yourselves!
Banish the word struggle from your attitude and your vocabulary.
All that we do now must be done in a sacred manner and in celebration.
We are the ones that we have been waiting for.”
– The Elders, Oraibi, Arizona Hopi Nation
Krista, thank you for the Hopi prayer. Is it the origin
Of the phrase “we are the ones…?” do you have
A book it can be found in? I love the image of our
Needing to venture to the middle of the river.
I agree that mental health reformers have generally come from outside of mainstream treatment systems, but I’d also give some props to well-meaning people without “lived experience,” especially Dorothea Dix, and the founders of the NAMI movement, and political actors like JFK and President and Mrs. Carter. It took so long to get to the point where people were even treated humanely. Like every civil rights movement, we need allies everywhere.
This is a social change movement, and like all such, it is playing out over the course of decades, and on multiple fronts. JFK and the authors of the Community Mental Health Centers Act generated resources and forums that made it possible for mental patients to collaborate and formulate the early literature of recovery. The same medications we see as grossly imperfect today made deinstitutionalization possible.
I started working through the concept of recovery years after the worst part of my illness, and still occasionally quibble over whether it does enough to let people see their way to a life not defined by illness. Unfortunately I have also seen bureaucracies manipulate the recovery concept in order to maintain power imbalances.
The movement to professionalize peer specialists parallels what is happening in the field of addictions: University-trained professional counselors are wiping out the true peers, whose strength was their experience, their cultural connections, and their capacity to relate informally. In mental health and addictions I think “peers” are more important to recovery than “specialists.” I worry about the economics for these workers too.
From my vantage point, what’s exciting now is the space where we affirm that people have multiple capacities, and that people retain a variety of strengths even when they encounter trouble in their lives. Even folks who work within the medical model are coming to realize that. People like Milt Greek are bridging cultures by describing how to connect with people who are actively psychotic. When people ask me how to reconnect with someone they have lost to psychotic thinking, I have a way to express what’s going on within their person’s experience, and also to have a way to explain that the strength of their relationship is the real ticket to hope.
The next step is not within the mental health system at all. Reform does not happen within the system. It happens within the wider community. It’s one thing to invent a kind of therapy and a program to deploy, but quite another to construct a social narrative that confronts the justified fears of the larger society. We need a narrative that addresses how everyone stays safe.
I agree we need to reached a wider audience. We have developed
EmotionalCPR, which is a public health approach for any member
Of the community to help anyone else. See http://www.emotional-CPR.org.
It’s Lisa Martinez, Suz’s friend…we met in Boston two years ago. I had gone through PTSD from the sudden accidental death of my son. Two things: how can I get involved with a group like this in DC? And how can I be trained in this type of recovery? My yoga business is going well but I think the time is drawing near that I expand my business to include an intentional focus on mental/emotional wholeness. What would that look like? So many yoga teachers add Life Coaching to their teaching but that tends to focus on strategic planning rather than facilitating recovery through shared experience and dialogue. Thanks and stop by if you are ever in DC! Lisa
Leesa Marteenez! I will do what I can to facilitate a connection. We should all have a reunion in D.C. That would be great fun!
Lisa, I am in DC often and will connect there. I am so glad you found me again. If life coaching is mostly focused on planning, we need a different name for the type of coaching a person can enter into when they need to restore hope and feeling they have a future. Maybe hope cultivators? Our emotionalCPR is very much about restoring hope which is what the R is:revitalization
It would be interesting to learn which recovery services are actually being brought to scale and how their implementation and impact are being evidenced. I ask this in light of the fact that the Mental Health Transformation – State Incentive Block Grants were to lead to recovery enhancing environments. Despite over 1,500 transformational activities the final report includes,
Were the grants able to create more recovery-enhancing environments? POC [Proof of Concept] studies were designed to focus on areas in which grantees thought they could effect changes. Limitations of this study were that the intervention fidelity and “dose” were not measured and therefore not statistically controlled. The results from these studies indicated the answer to this question is no. (Executive Summary, page 5, para. 2.)
I’ve found that virtually every provider agency now asserts that services are predicated on and outcomes reflect the Principles of Recovery. Sadly, when asked to evidence the same they can do little more then fumfer or resort to an anecdote. (Increasingly provider agencies assert that services and outcomes reflect both the Domains of Wellness and the Principles of Recovery.)
I had hoped for better in 1992 when Anthony’s, “Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s,” was published. I now fear that recovery services exist so rarely and are represented so widely that the expression is rendered mere shibboleth. It didn’t have to be this way but in the mental health system change is often represented broadly when it can be evidenced narrowly, anecdotally, or not at all.
As Dr. Fisher wisely observes, “The time is short, and too many of our brothers and sisters are suffering.”