Mad In America: Finding A Better Alternative To The Drug-Based Paradigm Of Care With Kermit Cole

 

The current drug-based paradigm of care tends to leave significant trauma history out. Leaving these things unaddressed keeps people from finding the healing and recovery they need. Mad In America, written by Robert Whitaker, discusses the effectiveness and safety of past and current psychiatric interventions for severe mental illnesses, specifically antipsychotics. It is more than a book since it catalyzes psychiatric care. It expanded to an online platform and non-profit organization later on, where it encourages people to share and publish their stories of real-life experiences about mental health. In this episode, we have Kermit Cole, a founding board member who has been its editor from 2012 to 2014, to tell us more about what they have discovered about drug companies and why other non-drug alternatives can be much more effective. He dives deep into the importance of social relationships and human-to-human connection, incorporating open dialogues and communities to help people. Kermit then discusses the interest that led him to therapeutic work and their organization. 

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Watch the episode here

 

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Mad In America: Finding A Better Alternative To The Drug-Based Paradigm Of Care With Kermit Cole

Kermit Cole was the Founding Editor of MadInAmerica.com. He and his partner, Louisa Putnam, practice family therapy in Santa Fe, New Mexico. They have a focus on families whose members have been, or are at risk of being, diagnosed and treated by the mainstream psychiatric industry. Their interest in integrating open dialogue principles and values into communities and networks has led them to be certified as open dialogue trainers and as peer-supported open dialogue practitioners.

Mad in America’s mission is to serve as a catalyst for rethinking psychiatric care in the United States and abroad. They believe that the drug-based paradigm of care has failed our society and that scientific research and the lived experience of those diagnosed with a psychiatric disorder calls for profound change.

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Kermit, thank you so much for joining us here.

I’m so glad to be here.

I was hoping you could start us off by letting us know how you got the work you’re doing and what drives your passion for it.

In mid-life, I found myself at a point of trying to understand some things and that the work I had been doing wasn’t quite satisfying me. That led back to school where I had set myself on a path to be what I thought was going to be a garden variety therapist. I was finding myself enjoying being with people who were trying to figure things out. I enjoy the feeling of helping somebody find something new in themselves or find a new path. I didn’t have much larger aspirations than that.

As I was in school, I was working in schizophrenia research and mood disorders research. I was working in a lab. The people who came in that were identified as schizophrenic, I discovered a couple of things. One is that I liked them. I had a feeling I felt for them. I had a feeling of connection. Also, every one of them had a significant trauma history that was not being addressed and not recognized. I felt that there was a strong connection, and I said so at the time. This was many years ago. At the time, when I went to work in this lab, I said, “I have my doubts about this schizophrenia diagnosis. I’m not sure it’s valid.” I was laughed at because I had no status to say that. They said, “Go do your work.”

A few years later, when we were collating the data, somebody at that table said, “Maybe schizophrenia doesn’t exist.” Everybody looked at me and then we moved on. A lot of those people have gone on to careers and let me know that they’ve come to agree, but that’s a whole other subject. At the time, while I was working in the lab, I started working in a group home. I ended up running this group home. I went there trying to look for a toe-in-the-water volunteer position, but circumstances were such that I ended up running the place.

I had the opportunity to bring in some of the things I had learned about. I’ll say this because it’s a good visual image. This was at Harvard and I was at the William James building. It’s that literal ivory tower, the tallest building in Cambridge. I was near the top of it, studying the DSM. I remember thinking, “This doesn’t pull up. This is a sweater that falls apart when you pull on any yarn.”

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Around that time, I heard an interview with Bob Whitaker on the radio. I also heard something emotional in the interview. I felt that he was being pushed into a corner. The interviewer was saying, “What do you think? Are medications good or bad?” He was saying, “It’s not really how I think. The research evidence does not substantiate the standard of care that we have and that a lot of people are pushed into.” These are my words. It doesn’t mean it’s never useful, but the fact is that it’s never useful tends to get used as a lever to push everybody into it when it’s not appropriate.

The evidence suggests most people should never take meds. For the people who do a little bit for a short time, at the right time, and not initially, but later on, when it becomes clear, this is what’s necessary can be helpful. He didn’t present a reason as to why, but that’s significant because we have a standard of care that purports to have a reason why it doesn’t have any claim to. It just suggests that it knows, but it doesn’t. Every ten years, the rationale falls apart and is replaced by another one.

The important thing here is that I took this job in this group home because of reading his book, or perhaps it was a conversation with him that introduced me to open dialogue and the Soteria houses. I found myself in a position to implement a lot of the philosophies. I found that I could do everything I wanted to do in that context with my focus being on creating a safe home for people. They’re people who arguably perhaps had never known one, or even if the home is safe, not predicated on their own well-being or their own perspective, or their gradually emerging self-agency. It takes a pretty remarkable home to provide all that to the person.

For the readers, can you give a brief definition of the Soteria house model?

The original Soteria was put together by Loren Mosher. He was, at the time, the Head of Schizophrenia Research at the National Institute for Mental Health. He was aware of at least two significant things. One was the legacy of houses done by RD Laing, where people with extreme diagnoses were put together to live with people who may or may not have had any professional credentials but were people who were able to show up in that situation. He followed that model.

I can’t claim to know the outcome data for those houses, so I’m not going to say that I do. What he did know was that the WHO studies coming out of the UN showed very clearly that if you are qualified for a schizophrenia diagnosis in the Western industrialized world, your prospects for a positive outcome were drastically less than if you were qualified for a schizophrenia diagnosis in a non-industrial country.

That study led to another study to try to understand why. They initially assumed that in the non-industrialized country, for some reason, people were more adherent to their medication regimen, but they found the opposite that very few people adhered to any medication regimen but got better. I won’t spend the time going over some of the reasons that might’ve been. Out of that came this experiment that Loren Mosher created called the Soteria house. It was a house where people with a diagnosis lived together with non-professionals who were screened to be very open-minded and able to tolerate extreme behavior. More than that, they’re interested in varied perspectives that are diverse from their own.

The outcome of the data was very strong. People got better. It’s been reviewed in the years since and only gotten stronger in the review. At the ten-year mark, when it became clear that this project showed that understanding schizophrenia and how it should be treated was completely wrong, the pharmaceutical companies flexed their muscles and the project was eliminated.

Loren Mosher retired angry. I met him years later, shortly before his death, and he was still angry. He resigned from the American Psychiatric Association with a letter you can find on the internet. He called them all a bunch of prostitutes to the pharmaceutical industry. I’m sorry if that’s going in the negative direction, but the positive is to learn that a safe home can transform lives.

The point about the Soteria home is that it’s a lovely, humane, and respectful environment. People are taught skills of living and art. It’s not the cold institutionalized if-you-get-out-of-line, we-lock-you-in-a-padded-room kind of a place and everybody’s forced to take meds. The Soteria home is 180 degrees off of that. I wanted to put that out there for the readers who aren’t familiar with that term.

The big takeaway is that we’ve been by the standard of care, the diagnostic system, and the medical industry that there are certain kinds of behavior that we can’t and shouldn’t try to deal with. That’s had a big effect. It used to be that the field of psychology or social work, or family therapy in particular, could indeed deal with situations that we would be told would be professionally responsible for us to even claim to have anything to offer them. That’s the worst of it.

We do everything that we can to remind people that life is hard, sometimes overwhelming, and confusing. They’re situations in which people cannot find a path toward a meaningful expression of what they’re experiencing. It’s meaningful either in the sense that they can make sense out of it for themselves or meaningful in the sense that they can get help for the needs they have or the abuses they may be experiencing.

When a person is in that situation and the things they’ve tried to do or say haven’t worked and they’ve lost hope that they will, it’s natural for them to keep trying. Their efforts become increasingly strident or bizarre to the point where they even lose track of how it started or what it meant. They lose track of a way to get back or they give up.

Those are the two hallmarks of a schizophrenia diagnosis. They completely shut off or are completely outside of the range of explicable behavior. I’ve experienced people who do not seem to be connected to you or to this reality at all. If you can create enough space and time, eventually, things become clear. Eventually, things start to come out. The things that seemed bizarre or could never have been resolved by any means turns out that they can.

We all have opportunities to step up to the plate and take a turn at making it easier and better for those around us and those to come after. Click To Tweet

I have one quick, strong example of somebody I was working with once. He was very insistent, trying to convince me that aliens had given him the cure for cancer. I was agnostic on that. I said, “I don’t know if that happened. It’s not my job. I have no authority over whether it happened or did.” Eventually, I thought to say, “What interests me is what it would mean to you if it happened.” He blurted out, “People would like me.” I stopped. I remember the moment. I was like, “I get that.”

It stuck on me so hard because I realized everything I had done in my first career didn’t give me what I hoped for. I wanted to be a film director and succeeded, but it didn’t give me some of what I hoped for. There were other things I needed to do in this way. The part of it about me wanting to be a famous film director, what I realized is that I could not conceive of anybody loving me who knew me. Since I desperately needed love, the only option left for me was to be loved by strangers by doing something that I couldn’t imagine doing. Since I couldn’t imagine anybody loving me, I could only think that I could be loved by doing something that I couldn’t imagine.

I was lucky. I chose to make films, which I could accomplish, and I did. I got love from it, and I’m glad I did. I’m proud of it. Looking back, I realized how insane it was to want love from strangers because that is not the kind of love that I want. It’s a dead end. It doesn’t get you where you’re trying to go. I realized at that point, “I need to learn how to be alone in a room with one other person and make it count.” That was the path I went on. I’ve learned a lot from whatever I have or haven’t accomplished in the world. There are things I’m proud of and work I’ve done that I’m proud of. There are people who attribute our work to the life they have, for which I’m proud.

The other part that is an important thing for people to have is you have to be doing this for your own self-discovery. That’s what I’ve learned from studying the philosophic underpinnings of open dialogue and of this work. I learned things. I’ve learned ways to look at the world. I’ve learned ways to understand the world. I’ve learned ways to make sense of the world. I’ve learned ways to be with people that, for me, in themselves, were worth the journey. That has its own thing. It’s not measured by how much or whether I’ve changed anybody else or changed the world at all.

It’s important to have an eye on what is your journey. If you’re working with somebody, they need to have a sense that you’re on a parallel journey of exploration. Otherwise, it feels like you’re just some mercenary. It doesn’t matter how well-intended you are. If you’re saying, “I like to help people,” that’s nice, but it can lead to situations where you get frustrated because the person you’re wanting to help isn’t getting helped by you.

Do you think they should?

Yeah. It could also be they’re not expressing themselves or sitting and not seeming to know you’re there. That can get frustrating and hard. Understandably, it is hard and terrible, but that’s what I’ve learned about the people that I’ve been with who were the seemingly most disconnected and least present in our reality. If I could somehow maintain the faith that what I was doing mattered, in the instances where there was a good outcome, I would find out that that person was exquisitely aware of everything I was doing and saying. You have to have faith that it is true.

 

On the other side of it, you talked about being on your own journey of discovery as you’re trying to help somebody else. When you’re there and they don’t seem to be responding the way you want to, whatever comes up in you is a discovery. If you deal with it and learn from it, you grow. Through your growth, you’re modeling for anybody else who wants to observe it and take advantage of it. As you’re talking about it, we’re all on this journey together. If you can have that as your experience, it’s a therapeutic process in itself. I’m learning as much from being with people as they are learning from being with me.

One thing I hoped to learn to do was that when I was feeling frustration or anger, I would try to bring my attention to that point of frustration and anger. Instead of reacting to it and pulling away or severing, I would identify that as the point at which the two of us are connected. I was experiencing frustration and anger at that point and attributing to the other person their intention, whether they were trying to drag me down into whatever abyss they were in or trying to hurt me. They’re not trying to do anything. They’re just trying to live like everybody. They haven’t been given the luxurious ways that have worked thus far or it has been beaten out of them.

I found at times that if I could manage to put my attention on that point of frustration or point of anger and think of it instead as a point of contact or connection that exists between the two of us, then I can hold my ground and find clarity. I can pull myself back in a healthy direction. It was an act of faith that they helped. They felt that sense of connection too. They could follow or hold onto that line to whatever facsimile of clarity I was maintaining for myself.

If you can be in that situation and have anger come up for you and you can take a breath, turn your focus inside, and explore for yourself how you are generating the anger there rather than attacking or blaming the person you’re sitting with for causing it? You’re modeling for yourself and that other person. You’re taking responsibility for your own emotions, internal responses, and reactions. That’s what they need to do to get better.

If I can focus and take responsibility for my emotions and reactions rather than attack them or blame them for it, it gives them a roadmap for how they might start doing the same. They’ll take responsibility for their emotions and actions rather than blaming the world outside of them for it. The effects of trauma that I’m carrying with me are in me. The initial event happened from the outside interactions years ago, but all the effects of it, I’m carrying around in me. The healing for that is in me. It has to happen in me.

This may be helpful and may be pertinent to what you’re saying. For me, I found the word love can be a very problematic word. Especially for a lot of the people that we work with, it’s a word that has come to be associated with things that were not safe or at least not true. It’s a very problematic word to operate on. I found myself needing to replace it with a different one. It’s not that I don’t believe in love. I do, but it can be problematic.

I found if I replaced it with the word clarity and that what I’m trying to find with another person is a sense of clarity, meaning that deep understanding about what they’re going through or what we are going through, then it was an act of faith. Clarity would lead directly to the thing that we call love, but it would do it in a way that was safe and reparative. If it’s with this sense of expectation, then you are bound to be disappointed and you risk ending up hurting the person further.

It's not about independent living. It's about getting to the place where you are in a relationship with the people that you want to be in a relationship with. Click To Tweet

Especially when you’re focused on expectation, you’re not focused on inquiry. You want this radical, deep inquiry to happen, so you get an understanding of the person and yourself. They can also have an understanding of you if they choose.

That’s exactly right. That was the biggest thing. To be honest, when I started on this path, I wasn’t ready to let go of being a film director yet. I imagined it would make me a better director and then someday, I’d make a film that would change the world in this space. I was drawn to being with people in the most extreme crisis because it was the kind of situation that was most necessitated. You’re leaving any assumptions or expectations at the door and walking in naked in the sense of not having a personal agenda. You’re just saying, “I don’t know what’s going on here.” That’s what I’ve said to a lot of people.

My experience has been that when somebody is in a real crisis, I have only ever experienced a positive turn after the moment that I gave up. It was after that moment that I thought, “We are going to fail here. This is hopeless. This is the one that’s going to humiliate me. I’m not going to be able to get past this failure.” If I could manage to hang on, then that was when something would happen. The reason for that is because that’s when I truly became allied with the person. They knew that I was where they were and that we were in it together.

I gave up all these ideas about being brilliant or being a savior. I was in there. I would say to people, “I have no idea what we’re going to do or how to help you.” That was an artifice that was coming from stating the facts that I was depleted. That’s when somebody was like, “I trust you now.” They would not say it, but that would be the effect.

You start to feel it.

Something would happen. It’s been an odd thing to experience this. Anytime I don’t have that moment and I get to walk through it or skate through it thinking like, “I’m bringing the gold here,” they always end up in some kind of failure. I still haven’t figured out how to say it.

As you’re describing it, what you’ve seen help most often is this deep, honest connection. You mentioned open dialogue. Your promo page on Mad in America talks about dialogical therapies or techniques. Can you talk about how you came to that and how you would describe that to others? What does it mean to be in an open dialogue process or dialogical process?

 

How I came to it was when I was working in the group home. A young person might come in with a terrible state and a terrible prognosis. We might make a lot of progress and they might come to experience themselves as having hope and moving forward. The minute they came in contact with their family again, it would all fall apart. I came to understand for myself that where there was the opportunity to include the family or put better the social network that was of meaning to that person, we would do it. We would never force anybody to be with people they don’t feel are the right people to be with.

When I started working there, the watchword of the place was to help people progress toward independent living. I noticed that whenever that phrase was said in the presence of somebody living in the house, terror came into their eyes. I thought, “We have to change this. It’s not about independent living. It’s about getting to the place where you are in a relationship with the people that you want to be in a relationship with. Let’s work toward that, whether it’s coworkers, fellow activists, or whatever it is.” That was the important thing because people don’t exist in themselves.

Our culture sells us a bill of goods that, first, we have to be completely solid and independent within ourselves. It’s fiction. It’s not what being human is. It’s about being in a relationship in a functional and meaningful way. That’s what we would work toward. For most people, that meant their family. I got oriented toward that trying to create safe homes, a safe community, and fun.

We played games. Every night at dinner, we laughed. I’m proud of that. We also try to move that in the direction of the family. Ultimately, that led to me exploring and training in open dialogue and learning how to certify as an open dialogue trainer. I have done individual therapy work. I do respect a lot of individual therapists or people who work with individuals that are struggling inside. I don’t mean to disrespect. There can be a lot of good work, but what I found when I was working with an individual because we didn’t have access to a family for whatever reason, usually, it was harder. It took longer. The gains were less resilient than if we got right to it.

If somebody was talking about somebody that they were in a relationship with, eventually, I’d say, “Let’s bring them in here.” Oftentimes, it was incredible. They were things that seemed insurmountable. Within a session, we would clear up misunderstandings and wrong expectations. I’ve seen incredible things happen that would have taken ten years to do any other way if ever.

One of the ways to describe the philosophy that informs open dialogue is to always be moving toward trying to expand the sense of relatedness and network. You try to raise whatever is being experienced to a higher level of social reality. You know that you are seen by the world that matters to you. You know that what matters to you matters to the world that you depend on. Whatever ways you can find to reinforce and strengthen that, that’s the basic thing about open dialogue. The reason it happens to be called open dialogue is that dialogue is so essential to being human. We can expand the understanding of dialogue to being able to look at somebody the right way and being able to say, “Good morning,” in the right way. That’s dialogue.

Unfortunately, we have this time restriction here. I’ve tried to ask a few questions. If you cleared your mind for a minute and thought, “What do I want to put out there that we haven’t even talked about?” It can either be the core of what you’ve learned for yourself, what you have learned works with struggling people, or hopes you have for taking this to the next level. What would you want to share with us that I haven’t even asked you about yet?

Being human is about being in a relationship in a functional and meaningful way. Click To Tweet

I’ll recap very quickly. It’s to remember that to be human means to experience pain and struggle and that we can help each other with that in deeper ways than our system allows us to believe. That’s one thing. We can go back again to the Mad in America journey. I met Rob after he wrote the first book, Mad in America. It was an incredible read. I bought it the day I heard the interview and then read it overnight. I couldn’t put it down. It was such a well-written book. It read like a detective story where the mystery is the question, “Could we possibly be this stupid in a way we’re dealing with this kind of distress?” I won’t give away the ending, but it’s not a happy one.

The book is incredible. It gives the great history of all the efforts that have gone into working with psychosis and how they lead to the misunderstandings that we have. I realized that Rob lived in Cambridge, where I was. I reached out to him and we had lunch. He came to the house I was working in and things have gone from there. One of the things I recognized was that Rob was so selfless. When he started to write Anatomy of an Epidemic, my comment was, “The first book nearly killed you. I don’t think you owe this to the world.” He believed the opposite. He believed in the mainstream, but as he dug into the research, he was shown by David Oaks, initially, and then others that there was something wrong going on.

He looked at the research in a way that he was more capable than most of looking and found that the research base was, in fact, seriously flawed. It was beyond flawed. In some aspects, it was criminal in the sense that people went to jail for their research. The research itself continued to inform standards of care. It’s a crazy situation. He felt obligated to write another book to address the question of whether our escalating levels of disability could be tied to the way we were trying to address it. He found that is demonstrably true.

That book produced such a groundswell of response from hundreds of thousands of people. They recognized that it was telling the story that they had been experiencing and made to feel crazy for even trying to say it. It seemed that they, as crazy people, were trying to say that science was wrong, which didn’t end well. He felt obligated to start a website to marshal and organize that energy for the good.

It’s important for people to know he has not benefited personally from this at all. There were moments in the last couple of years that I’ve seen him have the opportunity to make a decision that would have benefited him. The choice was that versus the greater good, but there was not one single instance I can name where he didn’t make the choice for the greater good no matter what it cost him. I almost cry when I think about it.

That was the energy that I saw with him that made me say to him one day, “At least let me help you. Let me get your laundry. Let me do something.” He was flying around the world for nothing. Anybody who asked him to come to speak, he went and spoke, paid or not. I could see he was living like a monk. He didn’t have money. People think somebody who has a name in print has money. They don’t. I was like, “I’m in. I’ll do whatever you want.”

Were you the editor?

 

Yeah. He asked me to help him start the website, which I did. For the first 4 or 5 years, I was up through the night while I was getting a Master’s degree. Also, I would be up in the middle of the night getting Mad in America going. I’m happy where it is. It’s far beyond anything I did in those first five years. I had to quit ultimately because my health was beginning to suffer. I was beginning to fall apart from the stress of it all. I had to back down and also focus on my practice. I don’t aspire to be a journalist as much as I wanted to know that I was doing good work with one person. When I was in the film industry, I was after big audiences. It took a change of direction and I wanted to be with one person at a time. I want to be with small groups.

The website is MadInAmerica.com. They publish a webzine. They encourage people to share their stories of lived experiences and provide updates about changes in the law.

It provides a platform for people who have been hurt and need to say so publicly. We’ve been very scrupulous to the best of our efforts, given that we also have to guard against other people being hurt. In every way we’ve been able to, our most important mission has been to provide a platform validated to people who have been hurt. It is a validation of their experience in the form of finding and showing research that says, “This did happen to you.”

I thank you for being willing to share that with us and for all the work you’re doing in this area. It is heartwarming to me when I find people who like to help people do it with balance and give from their abundance to others. They help this life that we have be a better, more enjoyable, and more rewarding connected experience. This human experience is not an individual thing. We don’t exist and thrive alone.

I’m very grateful to meet you. For anybody who’s trying to do this work, it can, at times, feel dispiriting. At times, maybe you’re lucky and that’s not the case for you. Doing this work, we are outside the castle walls. We’ve made our lives about finding other people who are outside of the castle walls and trying to help them.

We’re bringing comfort, solace, and hopefully, resources to those. For some people reading this, they may have never heard about dialogical or open dialogue work or the ideas about what’s going on in Soteria houses in Finland or in other places here in the US where people are trying to provide alternatives to simply match the list of symptoms with a medication regimen. That’s what we’re about. It’s to give people options and hope.

That’s always good. A phrase I like for the hard times is, “Freedom fighters don’t always win, but they’re always right.” That applies to this. Even though sometimes we can’t necessarily promise people that it’s all going to work out, we can say, “Right here, right now, you are seen, cared for, and loved. That’s not nothing.”

What matters to you matters to the world that you depend on. Click To Tweet

That’s a lot. That’s everything for a lot of us.

It certainly is for me.

Thank you so much for sharing with us. It’s an honor to meet you and find out about the work you’re doing at a deeper level. I look forward to our next contact.

Me too. I wish we could do this every day. Thank you.

I wish you blessings.

 

Important Links

• MadInAmerica.com
• Mad in America
• Anatomy of an Epidemic

 

About Kermit Cole

Kermit Cole was founding editor of madinamerica.com. He and his partner Louisa Putnam practice family therapy in Santa Fe, New Mexico, with a focus on families whose members have been – or who are at risk of being – diagnosed and treated by the mainstream psychiatric industry. Their interest in integrating Open Dialogue’s principles and values into communities and networks led them to be certified as Open Dialogue trainers and as Peer-Supported Open Dialogue practitioners.

Mad in America’s mission is to serve as a catalyst for rethinking psychiatric care in the United States (and abroad). We believe that the current drug-based paradigm of care has failed our society, and that scientific research, as well as the lived experience of those who have been diagnosed with a psychiatric disorder, calls for profound change.