You can read the entire transcript here, thanks Irit!
Will Hall, March 16
On the evening of March 16, 2012, the Adult Education Program at the Unitarian Church of Vancouver hosted the first of several events featuring Will Hall. The evening opened with gorgeous original music from Hannah Epperson. Parish minister Stephen Epperson (Hannah’s father) then took the stage:
Stephen: Welcome to an extraordinary evening and also a fabulous weekend. Tonight is our lecture, but tomorrow there is a day-long workshop on Emotional CPR and New Ways of Supporting Extreme States. Tomorrow evening, Will is going to be speaking at the Rhizome Café on the topic of Queer Pride, Mad Pride and Mental Diversity. And then, tomorrow on Sunday morning, Will is going to be the guest speaker at our worship service. The topic is Mental Health, Extreme States, Dangerousness and an Effective Social Response. So I think it’s going to be an unusual and very provocative, worship service. Last, but not least, on Monday evening we will be showing a documentary called Open Dialogue. no other program success rate. Eight-five percent of clients enjoy a full recovery, the vast majority without using
antipsychotic medication. The screening is jointly sponsored by West Coast Mental Health Network and the Adult Education Program of the Unitarian Church of Vancouver.
This year, at the Unitarian Church, we are focusing on promoting emotional, mental and
physical well-being. We have a number of Adult Ed classes, including yoga and tai chi. And, a wonderful experience for a number of us –- we’re meeting twice a month for a Madness Radio listening group. Those who show up are either dealing with mental health issues themselves or are allies of people dealing with such issues. It’s been a fabulous way for us to listen to people who are experts in the mental health field as well as those dealing with extreme emotional or mental states; we have great discussions afterwards.
Which leads me into introducing our evening’s speaker. We’re hear to listen to “Living with Mental Diversity: Bipolar, Schizophrenia and Psychosis in a Crazy World.” Will Hall is an acclaimed mental diversity counsellor and advocate. He is a therapist working with couples, individuals and groups. He is a survivor of a schizophrenia diagnosis. He is a trainer and teacher. And he is the host of Pacfica
Radio Network’s Madness Radio, which is archived and available online. There have been about 130 programs where Will interviews extraordinary people. They are some of the most provocative, informative interviews I’ve ever heard. It’s one of the best
radio programs I know. You can listen on the internet by going to www.madnessradio.net -– you can scroll through the archives and pick and choose the topics. Will is a really accomplished interviewer. Will is on the board of Intervoice: the International Community for Hearing Voices (see www.intervoiceonline.org) and is the director of Portland Hearing Voices. Please welcome Will Hall.
Will: Thank you so much, Stephen, for that nice introduction, and thank you, everybody, for coming out. It’s great to be back in Vancouver. I was here in May with Robert Whitaker, which was wonderful. I really want to thank Steven and the Unitarian Church of Vancouver for inviting me and having me here. And I want to thank Diana, and Catherine, my wonderful host here. And I want to thank all of you for coming out to talk about this topic. This is not something that gets discussed very much. It’s something of a taboo topic. And when we do talk about mental health issues, it’s often a cramped discussion we don’t often get to hear about alternatives and critical perspectives. So I really appreciate you all coming out.
I want to welcome all the different roles that are here. I know there are people here
who’ve been diagnosed with psychiatric disorders; people who have extreme states yourselves. I want to welcome you here. I want to welcome those of you who are family members. I’m also a family member of someone who’s diagnosed. I want to welcome you.
Professionals who maybe work in the field, as counselors, social workers, doctors, psychiatrists – I want to welcome you here. And the general public – because I think all of us are affected by this issue. So I really want to appreciate everyone for being here, and to appreciate the fact that it’s a very difficult topic. It touches
some of the worst kinds of suffering that we endure as humans. Madness. Extreme states. And I also hope to evoke in this talk the possibility that maybe this is also related to some of the most extremely joyful parts – the most creative and spiritual parts – of what it is to be human.
And I want to acknowledge that often when we come together and talk about mental health, there’s a lot of pain in the background, and to really appreciate those of us who are living with that and dealing with that, and struggling with that, in ourselves and in other people.
One of the things that often happens when I give talks is that people look at me and think, “Gosh, he doesn’t look schizophrenic!” One of the big messages that I hope you will take away from this talk is to move away from stereotypes. If we’re going to start talking about this and really understanding mental health issues and words like “psychosis” and “mental illness” and “schizophrenia” and “bipolar,” we really have to embrace the diversity and complexity of these issues. I am someone who does not take medications. They have not worked for me; they were not useful for me. I tried lots of different medications. At the same time, I know many people who are helped by
medications. So I want to welcome and include that diversity. I did not have good experiences in hospitals and with doctors, but I know that many people who have found in hospitals places of refuge and safety, so I want to acknowledge that.
In addition to being someone who has recovered from a diagnosis of schizophrenia, I’m
also someone who lives with what would be called symptoms. I still have experiences that would be called psychotic symptoms. I’m going to be talking about that, and my thoughts and my feelings about that, and how I do that, in a minute.
But what I was thinking we could do, just to start us off and really bring the diversity of our experiences with this into the room – I want to encourage you to take a moment to turn to someone sitting near you – someone you don’t know – and introduce yourselves to each other, and talk about how this topic affects you; how mental health extreme states affect you. I want to encourage you to take a little bit of a risk, to open up; but also to be considerate of yourselves, and not talk about anything you’re not comfortable talking about. But just take five minutes to check in and talk about this with your neighbour – someone you don’t know.
[five minutes of discussion within audience]
People ask me, “What is this idea of mental diversity? Can you define it?” If we could
somehow take everything that just happened in the room, and put it together, that would, for me, be mental diversity. Mental diversity is really a conversation about what it means to be human. All the different things that go into that, and all the different ways we express ourselves. We become strange or normal – acceptable or
unacceptable – because of who we are. For me, mental diversity is a dialogue. And that’s why I really want to encourage all of us to bring this out into the community. We really don’t talk about this enough. That would help so much.
Those of us who are here – maybe you did it just now, or maybe you didn’t, and that’s
fine. But those of you here who maybe have had an experience of what would be called being psychotic, or maybe you were in a hospital, or had a time in your life when you thought you might be in a hospital, or a time when you thought you felt like you were losing touch with reality or felt like you were losing your mind – if we can just come out of the closet a little bit – if we can just talk about it a little bit in our communities – we will discover that we’re not the only ones. That actually these are very common experiences, that have become taboo and secret and shameful and stigmatized. So I really hope that this conversation can continue, and people can bring it out.
I’d like to tell a little bit of my own story; how I came to be doing the work that that I’m doing. How I ended up with a schizophrenia diagnosis, and what I think that means and doesn’t mean. And then I’ll talk about the work that I’ve been doing and the international movements to rethink what madness is, and what mental health problems are. Then I’ll talk a little bit about my ideas of the way in which madness, in a sense, challenges us to rethink who we are at humans; to really rethink, on a deeper level, what it is to have a mind, and what it is to be a human being on Planet Earth. And then we’ll open it up for questions and discussion. How does that sound?
I’ve told my story a lot of different ways, and it’s always hard to know where to begin. Often where people begin is with their families. But my own family story really starts with history. And I really think all families, actually, are the beginnings of a connection with all of history, and all of society, and generations and generations of experience.
Both of my parents are trauma survivors. My father is a Korean War veteran, and he was also in prisons, in his life. And he grew up in a very abusive family in the Deep South. And my mother is also a trauma survivor. She was orphaned as a girl. Her mother died in a car accident when she was 12. And her father – my grandfather – was American Indian. He left our family and was in and out of prison, and had struggles with alcohol.
I grew up in the South – in South Carolina. So I had a lot of trauma and chaos in my
family, that wasn’t talked about. But my family was also carrying – was a conduit for – a lot of trauma and violence in history and in society. And that was really the starting point of coming to who I am, both as someone who’s suffered a lot and also as someone who’s learned what I needed to learn, to survive.
My family was quite chaotic. I didn’t get a lot of acknowledgement or support for my
feelings. It was never clear what was coming next – if love was coming next, or emotional abuse was coming next. My relationship with my mom was really difficult. I think she had a lot of problems in her relationship with my dad. So she turned to me, maybe in some inappropriate ways; some ways that weren’t really right for me. So my childhood experience was complicated. The idea of safety was something I didn’t have very much of, as a kid.
And I also remember, from a very, very early age, having emotional altered-states
experiences. I would become frozen and mute. I would be absolutely paralyzed by fear and not be able to talk. I would hear really aggressive, angry voices, attacking me and putting me down.
I also had visionary experiences. I would see cartoons on the ceiling of the house. And I remember having these ecstatic experiences in nature. And I remember, when I was in third grade, having some kind of hallucination, or some kind of visitation from a voice, or entity of some kind, that attacked me and held me down on the ground. I was taken to the school clinic, and they didn’t know what was going on with me. I was absolutely terrified by this experience.
So I really struggled with feeling like the world wasn’t safe, and there was something
strange going on. And I didn’t have anybody to talk to about it. In fact, I sort of wrapped it up in this word: depression And depression was just something I was carrying around with me, and I had to kind of try harder to manage with.
It wasn’t until I graduated college that things really started to come to a head for me – that a lot of those experiences caught up with me. And this was at an age – 25, 26 – where they say this is your “first onset” of schizophrenia. But my understanding is that it’s really the moment in your life when you’re under the most stress. It’s a
huge, huge stress.
I was transitioning from being in college to becoming economically independent. Living
independent from my parents. Really trying to find who I am, as a person, in the world. I was working at a nonprofit environmental agency at the time. I’d tried therapy. I’d gone to different counselors, and didn’t feel like I was getting any help from them. Then I saw something in the newspaper called the Bay Area Depression
Treatment Centre. And that sounded really good – they’re going to treat my depression!
So I went to the Bay Area Depression Treatment Centre and came out of my meeting with the counselor with an appointment to see a doctor. And I came out of the doctor’s appt with free samples of this new medication call Prozac. Which, at the time, was really being hailed as a miracle drug.
And I was really excited about taking Prozac, and really hopeful that it would help me. And sure enough, when I started taking Prozac, it was like the best cup of coffee I’d ever had in my life. It was amazing. I started going to work earlier, working more, staying longer. All of my fear and depression and sadness just – went away. Now I felt really up, and happy, and kind of high. I was working harder, and hanging out with people, and getting higher and higher, and feeling happier and happier. And pretty soon I was on the moon. I was just completely, completely high.
And what had happened is that I had a manic reaction to the Prozac. I was not being
monitored. No one had told me that this was potentially a side effect of SSRI [Selective serotonin reuptake inhibitor] antidepressants. It took me years to make the connection between the Prozac and that manic state.
I’d had really intense energy states, where I’ve been really active and really engaged. But nothing like this. I started going into work wearing a trenchcoat, like from the movie The Matrix. I was having arguments about WW II with my co-workers, and acting really, really “out there.” I had all these wild ideas and grandiose thoughts, like I was going to out there and start my own organization and
travel the world, and – well, maybe that wasn’t so grandiose, actually.
But I ended up losing that job. And, of course, the Prozac crashed. And now I’m back,
stuck with all the problems that I had to begin with, except now I’ve lost my job. And I’ve lost all my co-workers. My community – my friendships were really centered around my work. So I lost all my friends. I was under an incredible cloud of shame and confusion about what had happened to me.
And this was the beginning of a year-long downward spiral, where more and more things
started coming together. And when I work with people, and when I talk with people in the groups that we run, and people I meet, I ask them, “When you had your first break – when you had your first ‘psychotic episode,’ or your first crisis, that led to your being hospitalized, what were some of the stresses you were under?” And people start to make a list. I mean, I was probably under 20 different kinds of stress, any one of which could have really affected anyone’s mental health. And they were all just layered on top of each other. Being really isolated. Not eating properly. Sleep deprivation. Dealing with this incredible trauma of losing my job. This perfect storm emerged, for me to start to disintegrate.
And I did. Under that pressure, I started getting worse and worse and worse. I went into a very deep crisis, that was eventually diagnosed as psychosis, and was part of my diagnosis; of being told that I was schizophrenic. And I was in really bad shape. I was leaving through the window of my apartment, because I was so paranoid. I was convinced that my roommates were planning things against me, and trying to hurt me. So I couldn’t let them know whether or not I was in the apartment or not.
So I’d leave, out the window. I was walking the streets of San Francisco, and I would turn around and I would see people. And I was terrified that they had seen me, and they were thinking about me, and they were planning on doing things. So I’d have to go in a different direction.
I would go to the Golden Gate Bridge. I was very suicidal. I was hearing very aggressive voices telling me that I should kill myself. At the worst moment in this whole experience – it’s really hard to talk about, because it was a very extreme thing that happened to me. I went across the Golden Gate Bridge, dragging my hand against the chain-link fence until my hand was bloody. The dawn came, and the fog started to burn off. And there was all this rush-hour traffic, and all this garbage by side of the freeway there, in Marin.
And for some reason I was told or controlled or pressured to pick up this piece of orange Styrofoam. I stood by the traffic, holding this piece of Styrofoam, looking as crazy as I was. For some reason, in that moment, that’s what I needed to do. And I stood there, and stood there. I don’t know why. I’m still struggling with that experience.
That was really the low point for me. I had really lost touch with who I know myself to be.
When I did make it back to San Francisco, and I talked to my therapist, he said, “Well, go to the clinic, and get a different medication. I really was wanting help. So I went to the clinic. I didn’t have any idea what was coming next.
You don’t just walk into the clinic. You go to the door, and there’s an intercom. And
you buzz the intercom, and they talk to you, and then they buzz the door. The door unlocks, and you go in, and then the door locks behind you.
I was treated like a wild animal that they had captured and were observing. No one ever talked to me about what was going on. No one ever talked to me about what I needed, or if I wanted to go to the hospital. No one ever sat me down to hear the story of what had gotten me to that point. It was all interviews and observation clinical assessment. And eventually they said, “We’re not letting you out. You’re not able to take care of yourself. We’re concerned about your suicidality.” I pleaded with them. I said, “Look, I can make a contract. I’m not going to kill myself.” I wanted to go to work. I had already lost another job. But they wouldn’t listen to me.
Instead, they put me restraints. And I was not resistant. I was not struggling. But they said that the restraints were something that had to do to everybody, to transport them to the hospitals. After that, I had nightmares of being raped. The restraints experience was very traumatic for me.
And that began a year-long journey for me, in the mental health system. I left reality in another sense. I left ordinary reality and entered into the reality of mental health system. Arriving in the psychiatric emergency room was itself traumatic. They were bringing in people who were screaming. They were bringing in people who were having reactions to drug use. There was violence; people were coming in bloody. And we were all crammed into this really small room, where you had these chairs that folded out to become. That was the beginning of my being a mental patient.
I was in the system for a year. I spent about four months as an inpatient in the hospital, including several months in the locked wards. I was in halfway houses. I was in group homes. I was in residential treatment. I was in outpatient treatment. I was in homeless shelters.
Standing here today, you would not recognize me as the same person who was going through what I went through at that time. I consider myself very, very lucky that I made it out of that system. Because a lot of people don’t. I saw a lot of beautiful, wonderful, creative people who did not make it out of the system.
When I was in the hospital, they were doing a lot of different tests on me. They still
do Rorshach tests. They did something called the Minnesota Multiphasic Personality Inventory –
They had me filling in bubbles with a number-two pencil. They were really evaluating me. Eventually they sat me down and said, “Mr. Hall, we’ve reached some conclusions from your tests. You have a very severe mental illness – a thought disorder. It’s called schizoaffective-disorder schizophrenia. There’s no cure for it. Medications can manage it. You’ll have to take medications for the rest of your life. You really need to rethink your plans and your dreams and your hopes.
That moment was like the doctors were casting a spell on me. They had a certain belief
about my experience, that was not anything like a dialogue, or a discovery, about my own understanding. It was an outside, “objective” assessment of who I was, leveraged by all the power that they had as physicians in that hospital, where I was locked up. It was like they were casting a spell on me. And I started to believe that spell. I
started to believe that I was schizophrenic.
My recovery process has in large part been about unlearning the lessons that I learned in the hospital. And I tried lots of different medications. And everything just made me sick, or made me worse. I wouldn’t come out of – the primary symptom that they would see is that I would go for weeks without speaking. I would get completely frozen and not move, which is called catatonia.
And then there were times when I would speak – I would talk about suicide.
I don’t remember what the circumstances were, exactly, but when I got my files, I read that I would make violent threats against the television set. How many people here have been angry at their television sets before?
It was a really difficult experience. They weren’t going to let me out. They decided that I was dangerous; that I wasn’t able to look after myself. So they came and said to me, “Well, Mr. Hall, you know we’ve tried everything. And now we’re recommending
My father is an electroshock survivor, and he has nothing good to say about it. He was traumatized by his electroshock experiences. But I was desperate. I wanted help. And I was really considering it. In his era, they just did it on people. They used it as punishment. They used it as control. Now, there is some consent involved. They
were asking me to sign a release. And I was thinking about it. I was really debating it. They were really saying, “This is all we have left.” Because they’d tried all these medications; they had this huge tool kit. But it’s like a tool kit that’s full of nothing but hammers. All they have is medications. They have one thing to
try, and then the last resort is electroshock. And then the social worker came in and said, “Mr. Hall, we’re releasing you tomorrow.” And I said, “What?” And she
said, “Yes. The insurance money to keep you here has run out.”
[laughter and groans]
So that was the one time in my life that I’ve been grateful for the insurance industry. So I was discharged, sure enough. I went to this homeless centre at 14th and Mission, under the freeway. It was this horrible, run-down place. There were insects, and there was a lot of violence there. My friend had his door smashed down, because there was this big fight. It was this horrible, horrible place.
And I started to feel better! To get happier, being out of the hospital. So that was the beginning of me exhausting the resources the mental health system had to offer, and trying something different. It’s partly the human spirit. When we are absolutely tested to the limits – when we are pushed past the point of knowing what we’re capable of – that’s when resources from inside of us start to kick in.
And I consider myself very lucky, that something inside of me started to ask questions. I’d been raised to question authority, and when I’m told one thing, I want to look at the other side of it. And one of the key things was that my mom was mixed American-Indian. She wasn’t raised on a reservation; she doesn’t have that kind of connection with her heritage. But I was always raised with a belief in deep, deep spirituality, and a real pride. And knowing that there is something more to this reality than just physics and mathematics and medicine and science and objective reality. That there was something deeply spiritual going on.
And so I always questioned that, about the diagnosis that I was given. And that really helped sustain me, and helped me to start a journey – a quest – that took more than ten years. It took me many, many, many years of trial and error to discover things that started to make sense of my experience.
I was on disability for years. I lived in a rundown apartment in the Tenderloin for many years. And so, it took me a long time to slowly get things back together. There were a lot of different ingredients. And I know that different people have their own set of ingredients, and I really believe that there is a diversity of what helps people.
But some of the things that helped me were learning about nutrition and allergies. Learning about my environmental sensitivities – I’m very chemically sensitive. Connecting with meditation, and starting to study my own mind, and learn relaxation and self-observation. Exercise was really important – starting to do yoga.
But I think the key ingredient – the thing that was most important – and this has become a thread that’s run through all of my life, because it was so central to me – was finally talking with other people who were themselves survivors of a schizophrenia diagnoses and psychosis diagnoses. Who had themselves been in hospitals. Other people who had been diagnosed as psychotic.
I was able to find people who really listened to what I had to say. I could talk about
being suicidal. I could talk about the times that I had cut myself. I could say, “Hey, I’m hearing voices.” And they would say, “Oh, yeah? What are the voices saying? Are you hearing them right now?” They were interested in what I had to say. They were really listening to me.
And since then I’ve discovered that, although listening is a simple human capacity that we we all have – yet somehow, when it comes to extreme states, we stop listening. And that is really the key to starting to help people, and heal people. To start to listen, deeply.
I slowly started doing community work. I co-founded an organization called the Freedom
Center. We had one meeting a month. We had no money. We had a borrowed library computer and a free e-mail account. But that grew. And pretty soon we had two meetings a month, and then one meeting a week. And then someone came in and said, “Hey, I’ll teach yoga.” And someone came in and said, “Hey, there are these grants
available.” Other donors started to show up. It just grew and grew and grew.
In the beginning, in this small town where I as, in Massachusetts, the attitude was, “Oh, the crazy people are taking over the asylum. What is this Freedom Center group?” and then, eight years later, the mayor came to our anniversary celebration, to congratulate us for the work we’d been doing. And now we’re receiving city money in Massachusetts.
So, through that local support group experience, I discovered a whole international network of people who are thinking differently about mental health. And there were two really important ingredients in our support group work. One was that we were not going to preach to people about what the solution was. There are many, many different perspectives on what madness is, what mental illness is, what psychosis is. We weren’t
going to come up with one answer. We were going to say, “What do you think it is? What’s your answer? We’re going to create a support group that’s a forum.”
One person will say, “Meditation really saved my life.” Another person will say,
“Well, you know, that’s great, but I tried to meditate, and it made me more anxious.” And both perspectives are welcome. It was really important that both people who take medication and people who don’t take medication were welcome in the group. And people who liked their therapists – who liked their doctors – and who didn’t, were all welcome. We created this space for diversity.
And a lot of people did come to us wanting help coming off medications, and learning from me and from other people who were living without medications. So we did help a lot of people come off medications and get control over their medications. But we really resisted that stereotype, that we were an anti-medication group.
And so, eventually, people in the community started to realize that we knew a lot; we had a lot of experience and a lot of knowledge, and were actually really helping people. We set up an acupuncture clinic that was free, and open to the whole community. We developed this whole body of wisdom. And a lot of the people involved with that group have now gone on, and have different jobs – they’ve become counselors or are doing organizing, or have gotten positions in different agencies and organizations and groups.
And we discovered that, for us, this simple principle of listening to diversity, and
discovering each person’s own experience, and the depth and the uniqueness of that experience – that this is something that people had also discovered in other parts of the world.
I learned about, and became part of, the Icarus Project (www.theicarusproject.net). And I learned about the Hearing Voices movement, and how they were also creating these support groups where there was no one way to understand your experience. Where different perspectives were welcome and everyone was included, regardless of their point of view on medications; regardless of their point of view on what their voices
were all about.
And there was also an openness to working with professionals, and with doctors. We were always trying to build bridges and create allies. To create a real coalition of people who work together.
So I contacted, and got really interested in, and got involved with the Hearing Voices movement and with the international movement. And then I started discovering all these things about the mental health system, and all these things about the movement to change it. The efforts to reform and challenge the DSM – The Diagnostic and Statistical Manual, which is sort of the “bible” of what the disorders are all about. The incredible corrupting influence that the pharmaceutical industry has had on medical science, and on the clinical trials of pharmaceutical drugs. The scandals of the side-effects and the marketing. The way that, for so many people, the problem is really the medications they’ve been taken, and that they’ve been told, “This is a biological disease. You need to take medications. It would be irresponsible not to take medications.”
Maybe this helps some people – it does help some people. But it’s also hurting a lot of people. And there’s been a lot of research and journalism that’s been done. For example, the way the medications are being marketed globally is really quite appalling.
In Japanese culture, there’s a real tradition of honouring sadness. Sadness is a really esteemed and valued emotion, that’s given a lot of respect in literature, in poetry, in theatre, in the religion. And this, of course, is an obstacle if you are GlaxoSmithKline [a huge pharmaceutical company], and you want to market your drugs for treating depression. Because they don’t understand depression the way that we do in the United States.
So GlaxoSmithKline went in and spent millions of dollars on consulting fees and on academic trainings, and on influencing the media. And they actually created a market in Japan for their drug, Paxil, by manipulating the entire Japanese culture to change its conception of sadness. To start to create this idea that depression is an illness, and can be treated
I discovered story after story like this, and started seeing a deep, deep craziness,
really, at the heart of the mental health system and the way the pharmaceutical industry is operating. And the increasing number of people being diagnosed bipolar, and put on bipolar medications. And how someone is given a drug like Prozac, like I was, and has a manic reaction – now they’re told they’re bipolar. Now they’re
given bipolar drugs.
And so, we’re seeing a terrible, terrible cycle where disease and disorder are part of the market expansion of an industry. And this is driving the science, and it’s driving the way mental illness is treated. And we’re getting really terrible results. The outcomes for mental health treatments are just terrible. A hundred years ago, the recovery rates for schizophrenia were better than they are today.
If you look at the history DSM, you do not see a scientific document. You see a collection of the opinions and subjective perspectives of very politicized professionals, in a political and economically driven industry.
There’s another example, from the history of the schizophrenia diagnosis itself. Originally, in the 20s and 30s, the stereotype of someone who was schizophrenic was the housewife who was sad and withdrawn, and would not do her duties as a housewife; would not do the housework. This was the typical case of schizophrenia.
And then, in the 60s, something shifted. The actual criteria for schizophrenia shifted. A lot of psychiatrists and hospitals and police were encountering young, angry black men who were part of the civil rights movement. Who were part of the riots – the uprisings – in the Black Power movement. Who were angry. Who were perceiving a conspiracy of power against them, that was called paranoia. They would see it is white privilege, but it was called paranoia.
And so we actually see the diagnositc criteria for schizophrenia change. So now you have anger and paranoia and hostility being included as criteria, whereas 30 years before they hadn’t been. Because the stereotype has changed. So there’s a way in which the DSM and the perspectives of the psychiatrists and the doctors who were giving these diagnoses is thoroughly politically constructed, and thoroughly dependent on the culture and context that they’re within.
So I started thinking, Wow. How do we get back to that listening? How do we get back to the real essence of what helped me? The Hearing Voices movement is really key. I would love to see Hearing Voices groups established here in Vancouver and in the rest of Canada.
And I also want to talk about the Open Dialogue program in western Finland. It’s getting the best results for schizophrenia treatment in the world: a recovery rate of about 80%. That means 80% of the people who have been tracked after five years being the program are back in school, or are working or seeking jobs. Twenty percent or less are on medications. And this is something that’s been established for more than 20 years in western Lapland. And it’s become so effective that the rate of schizophrenia there is actually declining. They’re actually seeing a dramatic reduction in the number of people diagnosed with schizophrenia, and a 33% decline in their budget for mental health in general, because of the effectiveness of this program.
I asked the director, Jaakko Seikkula, how he would describe the essence of Open Dialogue. And he said, “The essence of Open Dialogue is democracy.” Basically, it’s a way of listening. When someone has a crisis, everyone in the family – in the social network – is brought together within 24 hours. The professionals meet with them. And the professionals don’t diagnose. They don’t come up with a treatment plan as quickly as possible. They’re not focused on stabilization.
They create a discussion. And it’s an open-ended discussion: “What brings you here? What’s going on? Well, we’ve heard from you; let’s hear from someone else in the family. So-and-so is talking and behaving in a very strange and unusual way. What do you think about this? When did this begin?”
The person who is considered psychotic – even though they may not be communicating in a so-called rational or normal way – they’re included in the discussion.
And one of the things that’s most amazing to me is that the professionals do not leave the room, discuss amongst themselves, and then come back in and give a diagnosis. The professionals do all their discussing, all their treatment planning, all their thinking, out loud – with the families. With the person in crisis. It’s a completely transparent approach.
And I have to say that a lot of people who are going around with a diagnosis of schizophrenia – and symptoms that are considered paranoid, where they think people are out to get them and talking about them – they’re not actually paranoid. They’re talking about the mental health system, and the way in which that transparency doesn’t
exist. It’s a very unnerving experience, to be diagnosed, and to have professionals talking about the most intimate part of who you are.
And so, Open Dialogue has been an incredible learning experience for us. We’re trying to see how that can be adapted. Because the outcomes – it’s as if the Nobel Prize for medicine – as if the holy grail for treating schizophrenia had been discovered, and was functioning. They have this program in this one place, that’s actually working, and changing people’s lives.
It has incredible implications for changing the treatments for schizophrenia. For
actually getting successful outcomes – actually helping people recover. Of course, it challenges the pharmaceutical industry. Because one of the cornerstones of the program is that they use very little medication. They actually assume that there is meaning in what people are going through.
And this is the idea I want to leave you with; that everything that I’ve gone through, and everything that I go through today, has meaning. I want to say something that I think is really true: I think that every human experience is normal. That we are part of nature. That everything we go through comes from somewhere. It has a purpose. It has a place. It makes sense.
When I go out into the forest, I’m not saying, “Okay, this is a normal tree; this is an abnormal tree. This is a situation that belong. This is something that doesn’t belong.” Everything is part of the cycle. Even if a disease has taken hold in a tree, that disease has a larger purpose. It has a place in the larger ecosystem. It is part of a single, unified whole.
And if you just take a step back for a moment, you can see that the life cycle of that forest is actually dependent on what we would call a disease. That the evolution of that ecosystem goes hand in hand with all the different parts around it. It’s actually connected, and there’s a purpose, and there’s a larger meaning that’s being served. And that larger meaning is complexity, and diversity. That all of life is moving to explore and discover greater diversity and greater complexity.
For me, when I discovered the Hearing Voices movement, I learned that hearing voices is not abnormal. It’s as normal as being left-handed. It’s as normal as having blue eyes. It’s a variation of human experience.
Most of the people who hear voices don’t have distressing experiences. They don’t end up in hospitals. They don’t end up with a psychiatric diagnosis. Poets, artists, prophets, inspired people, musicians have heard voices throughout history. And we need to welcome that. We need to not do what we did with people who are left-handed, which is to tie their left hand behind their back and force them to write with their right hand. To see them as needing to be corrected and brought into normalcy.
And this is something that I think is true of every experience that we would call extreme, or that we would call madness. Just from my own experience – when I was in those deep states – when I was in a suicidal state – one of the experiences I had was of hating this world. This world did not make any sense to me. Everything was wrong about this world. I hated this world.
Now, that seems pathological, until you realize that now, my belief is that this is not the only world. This is actually one of many, many, many worlds. And if I spend too much time in this world, it’s not good for me. It’s like, I want to visit New York City, but I don’t want to live there the whole time.
I need to visit other worlds. I need to embrace altered states. I need to embrace spiritual realms that I contact. That helps live in this world – to know that it’s not the only one. There’s a germ of that truth, for me, in that suicidal state. When I’ve been suicidal, or had suicidal feelings, it’s about a conflict.
We often see suicide as being against life. I think suicidal feelings are really a conflict between a person feeling that they want some change – that they want a different life; a better life – and another part of them that feels absolute despair and powerlessness to be able to get that change to happen. Because I did need a different life. I did need to change. I needed to make big changes.
And one of the things I talk about in my workshops and my trainings is that suicidal feelings are way more common than we want to acknowledge. They are very, very common. It’s the one thing that will get you locked up immediately. If you tell a professional that you have suicidal feelings, they’re often mandated by their job description to lock you up. To get you into a hospital.
I think it’s just the opposite. I think we need spaces where we can talk about our suicidal feelings, and discover not only how common they are – how many people live with them – but also how we can support each other, outside of diagnosis and medications and force and restraints, and locking people up in hospitals. But also how we can discover that those feelings are part of who we are. That maybe they have purpose and meaning. Maybe there’s a message behind that suicidal feeling, that says something needs to change, and you’re feeling powerless to effect that change.
My paranoia – I get very paranoid. I start to think that people are thinking about me. That people are talking about me. That people are feeling things that I’m feeling. But – wait a second – all those things are true, aren’t they? Don’t we all think about each other, and talk about each other, and feel each other?
For me, I believe that my paranoia really came from living in a very volatile family
situation. I alays had to be watching for little signs and signals: is my father in an aggressive mood, or is he in a friendly mood? Because I never really knew. I had to be constantly on the alert.
Now, living like this is a recipe for making someone hypersensitive, hypervigilant – paranoid – in their adulthood. And at the same time, you can see it as a powerful, powerful training ground for becoming very sensitive, and learning how to communicate on a very subtle level.
My paranoia serves me very, very well as a therapist. Because I can pick up very subtle things. I can have very subtle sensations and intimations of what a person’s feelings are. And then, I can believe in them, and connect with them, and find that I can relate and communicate in a much, much deeper way.
And I have to say, if I felt like had to sleep eight hours a night, and to get up at the same time each day and go to sleep at the same time every night, there’s no way I could do that. My creative cycle goes through periods where I feel depressed, and blank, and I’m sleeping more.
And then there are other times where – whoa! It’s 11 o’clock, and I’m just getting rolling. I want that energy. I want to go with it. I’m pushing myself; I’m pushing my body. I’ve talked to so many artists, musicians, writers who have the same thing. They have cycles of creativity that are connected to cycles of depression. Highs and lows. Energy bursts. Moments of inspiration.
We’ve reached a point where, instead of saying the word “fear,” we say the word “anxiety.” Instead of saying the word “sadness,” we say the word “depression.” Instead of saying “inspiration,” we say “mania.” Instead of saying “despair,” we say “suicidal ideation.”
We really need to see that all of these are just like the diversity of a forest. These experiences have meaning. They have a place. We just haven’t quite discovered it yet. We don’t know quite why or how they’re serving the person, but they really are. I really feel that all these things are serving us.
Just to wrap it up, I’ll give you a couple of examples, from people I’ve worked with.
There’s a young woman who’s very scared, because she goes into psychotic, manic states, and she ends up in the hospital. And she wants help not to go into these states. And, yeah, I want to help her not go into these states. But I also want to understand what they’re about.
I talk with her, and she tells me about her mania, and about the very difficult things about her mania. And one of the qualities – the essences – of her mania is that she talks about stuff. She just blurts stuff out. She talks about sex with her parents. She talks about her boyfriend – really inappropriate talking, and bringing stuff up; bringing stuff out into the open. Including things about her family history, as immigrants from Bangladesh.
Her family has been deeply traumatized. Her mom and dad never talk about their experiences of violence, as immigrants from Bangladesh. That’s the family she grew up with. She goes into altered, manic states – and suddenly she’s talking about it. She brings the secrets out in to the open, and forces the family to talk about them.
Now, my question to you: Who is crazier, the family that doesn’t talk about trauma like that, or the daughter who goes into extreme states and forces the family to talk about it? Who’s crazier?
Another person I work with hears 38 voices. One time she came into my office and said, “Will, something new has happened. Now one of my voices now hears voices!”
I don’t know if that’s exponential, or how you add that, or multiply it. But she works with me because I don’t think she’s crazy. I don’t think she’s schizophrenic. I don’t believe that. Her voices have meaning.
I talk with her, and she’s very interested in talking about the voices, very focused on that. I start to learn about her life, and her experience. She’s been married for 34 years. Her husband goes away to work. She stays at home, alone, with no one to talk to. So she starts to hear voices.
You can say that her voices are pathological experiences. But you could also say that her voices are actually showing her what she needs. She needs relationships. She’s a brilliant, brilliant woman. And she has no one to talk to about her ideas about religion, about philosophy, about theology – except her voices. So our work hasn’t been about getting rid of her voices, but about helping her find people to talk to, and get something happening on the relationship level.
And it’s interesting; she was on medication; now she’s off medication. And as we’re discussing whether medication is right for her, and how to make changes with her medication, she says, “You know, I have a voice that I think wants to speak now.”
“Yes. It’s a voice that works as an apothecary.” An apothecary is a pharmacist. One of her voices is a pharmacist.
So we consulted with her pharmacist/apothecary voice about what to do, and it gave a lot of really good advice about changing her medications.
So, my belief is that, really, this about ecology. This is about permaculture of the mind. This is about how we make sustainability happen, in terms of our inner experiences. Our inner psyches.
Because we’re all part of nature. And the ecological crisis that’s happening “out
there” – it’s happening in here. This is one fabric, that is moving into crisis on a global level.
And one of the things that struck me most – and I’ll end with this – is one of the experiences that has guided me to the work that I do, and how I do the work that I do. I came out of the hospital and slowly started putting my life back together. And I went back to school.
I was living in the Castro district in San Francisco. And I went to school, and right near my school I saw one of the resident psychiatrists from the hospital. And it was this incredible coincidence – what is he doing near my school? An incredible synchronicity.
So I come home, and I’m a little bit shaken up. And there’s a stack of mail – in a lot of places you get mail addressed to previous tenants. So we have this stack of mail that we get, for people who have lived there before. So I glance at this stack of mail. And the name on one of the pieces of mail is exactly the same as the name of my other psychiatrist, in the hospital. It’s right there – his name.
And I’m, like, Wow, this is getting really weird. Really freaky. Wow. So I told my roommate. I said, “Hey, I just saw the stack of mail; someone who used to live here has exactly the same name as one of my psychiatrists in the hospital.” And she looked and me, and she said, “The person who used to live here was a psychiatrist.”
So it turned out that my former psychiatrist used to live at the house I was living in, in San Francisco. And I looked at her, and I said, “What room did he live in?”
I was sleeping in the same room that my psychiatrist had slept in.
You could say, “Oh, wow, isn’t that weird.” But for me, this is something that I consider really meaningful. I get messages. The universe is talking to me through this. The universe is telling me two things. One is, “This is a big part of who you are. This is a big part of your destiny and your learning, connecting with this.” And the other thing it’s telling me is, “You’re not very different from that psychiatrist. It seems like he’s on the other side. But you are him, Will. You are him.”
And that’s been one of the great guiding principles of my work – to build bridges, and to really try to understand the other side. Because I think that’s how we’re going to move forward; if we can get beyond “us and them.”
Because, fundamentally, that’s what diagnosis; that’s what the failure of the mental health system; that’s what not listening, is all about: “I’m not you. I’m not going to listen to you. Sorry – you’re one of them; I’m way over here.”
That experience completely overturned that for me. To really understand, to really
empathize even with someone who abused me. Who I feel inflicted a tremendous amount of harm, that threatened to destroy my life, to destroy my soul. Even that person, I want to see as, “This is also me.”
I really want to thank you for this time to speak with you today and to tell my story. And now we’re going to open it up for questions.
Q: Were your studies influenced by the transpersonal psychology model? They have quite a bit to say about the relationships between creative and exceptional states.
A: I have a master’s degree in process work, which is a Jungian approach. I looked around at a lot of different frameworks. I was looking for something that didn’t pathologize – that didn’t use the DSM – and that was open to spiritual and crossculturual understandings of madness. And one of the things I discovered is that a lot of spiritual approaches are still pathologizing. It’s just that instead of saying you have faulty neurotransmitters, people say that your chakras are imbalanced.
I really want to get away from all of that. I have much more of a holistic approach. And one of the things I think is valuable about a Jungian model is that it looks at things that we consider as pathological – as diseases, or disturbances – as having a purposeful meaning for us.
And of course we have to get our lives under control. To live in ordinary world. But, at the same time, I think there are messages that come from things that we tend to think of as disease or disorder or pathology.
So that was one of the things that was really important for me. I needed to be in an
atmosphere where I didn’t feel that the professors were talking about me behind my back: “Is he a mystic, or is he actually psychotic?” That type of thing.
Q: Did you graduate from Pacifica?
A: No. From the Process Work Institute, in Portland, Oregon.
Q: What’s your take on demonic possession versus, say, schizophrenia?
A: That’s an interesting topic. There are a lot of cultures that believe in spirit
possession. There’s a wonderful book called Crazy Like Us, by Ethan Waters, which is a crosscultural perspective on psychiatry. He talks about an indigenous culture in Zanzibar. They believe in spirit possession. People go into states about which a Western psychiatrist would say, “That’s schizophrenia.” But they don’t look at it that way. They consider it to be spirit possession. And it turns out that people there end up recovering faster and better than if they were given a Western diagnosis and treated with Western drugs.
And why is that? Why is it that telling someone they’re schizophrenic and giving them meds doesn’t actually lead to recovery the way that this framework of normal spirit possession does? There are two crucial ingredients. One is that it’s considered normal – “Yes. Spirit possession happens. It happened to you.” It’s just considered part of human experience. So there isn’t this exiling of the people. “You have to go live over there now. You’re a mental patient. You have to live in a special place, apart from us. You’re not one of us anymore.” Instead, you’re included. And the second ingredient is that people recover from spirit possession. You can get better. You go to a healer.
So those two ingredients are crucial to the recovery process. And I think that’s probably crosscultural. That in cultures that exile people and treat the problem like it can never be solved, that’s more likely what happens. That people are going to end up being chronically ill.
There’s a movement now, especially in multicultural societies, to respect people’s frameworks. If someone comes from a Muslim society and they’re having these far-out, extreme states, maybe that’s a djinn that’s attacking them, and they need to go to the imam of their mosque, and get help with that. Rather than seeing it as, “Oh, those are archaic beliefs, and you really need to get with the scientific program of modern Western medicine.”
Well, actually, if modern Western medicine was producing good outcomes in regard to mental health, maybe that would be a reasonable argument. But I don’t think it’s a reasonable argument. I think that the scientific, medical way of seeing mental illness is a cultural belief, from a specific culture. And exporting it is a form of colonialism. We’re imposing it in the name of objective science. But that’s been done
throughout the history of colonialism: “We believe that we have access to science and truth and God, and so our culture is better than yours.”
I work with people who have demons. I’ve talked to their demons. I’ve invited their
demons. I think normalizing the experience; not freaking out; communicating with them – my approach really is based on diversity. So if someone really, really believes that’s what’s happening to them, I’m going to follow that. I’m going to allow that belief to be the basis of working with them, and see how it goes.
The woman who hears the 38 voices – she believes the voices are real. I believe the voices are real. She hears the voices. They are happening. I can’t tell her that they’re not real. But I’m also not going to be so interested in communicating with the voices as the main form of work with her. Because she needs to talk with real people, and relate to other people in her life. That’s really her issue. Whereas for
other people, getting the message from the voices is the main thing, for her, she’s heard the message from the voices a lot.
If I was engaging with someone experiencing demon possession, I would want to know the demon’s name. Why is it possessing them? Is it male or female? When did they first start experiencing the demon? It may be associated with trauma. People having voice experiences or possession experiences is often associated with trauma. But also, I would be very interested in respecting that person’s spiritual and cultural
beliefs – to the extent that those beliefs actually serve them. I would want to explore that with them, and see if that could be helpful.
The word “demon” actually comes from the Greek word “daemon,” which basically means “guardian spirit” or “guardian angel.” It’s an aspect of the psyche that the ancient Greeks were in touch with, that provided inspiration and guidance. Like inner conscience, or the Muse. And then the word got twisted around in the development of
Western civilization, in the context of this very rigid black-and-white, good-and-evil polarity.
So it’s a really rich question. Did I answer it?
Trying to argue against people’s beliefs is not usually a good way to build a relationship with them. You really want to respect and listen. I’m thinking about someone I work with. He’d never talked about his demon experience. He has this demon. And I could say, “Look, it’s not your demon; it’s your father. Your father is not a great guy. He’s totally abusive. He’s horrible. You’ve idealized your father, and you’ve split off that, and you’re projecting it onto this demon figure.”
That would be a Western, psychoanalytic way of working with that person. That’s not what’s going to help him. What helps him is, “Yeah, tell me about the demon.” We’ve talked a lot about his demon. He tells me what the demon is saying. The demon is really nasty. It’s very aggressive.
You could say, “He’s a very calm guy, who’s not in touch with his own aggression. So he projects it into his demon.” But that’s a psychoanalytic interpretation. If that helped him, I would follow that. But what helps him is having someone to listen to his experience. Because he’s never been able to talk about it. And after working with him for several months, he’s less anxious. He’s less freaked out. He’s in a different place.
So, yeah. It’s something that isn’t talked about. It’s kind of scary. “Voices” is a category that can mean a lot of different things. I’ve had really scary experiences with entities that would be called demonic. I’ve used that language before. In that period when I was going to the Golden Gate Bridge, right before I was locked up, I was convinced that the Devil was leaving voice messages for me. That he had sent me this postcard, and was communicating with me.
Having grown up in a Christian culture and with a lot of horror films, I was terrified of stuff that I was seeing on television. That really seeps in. It affected me a lot. So it’s a really interesting question. Have I answered it yet?
Q: Have you read Julian Jaynes’s work on the bicameral mind?
A: It’s interesting; I grew up in a pretty intellectual family. And that book, coincidentally – or not coincidentally – was recommended to me when I was 12 or 13. I remember trying to figure it out. He’s a very controversial thinker, who wrote a book called The Origin of Consciousness and the Breakdown of the Bicameral Mind. The idea is that what we today call hearing voices is actually the residue of a more primordial form of consciousness, where people did not have a reflective self that deliberates about our actions and beliefs and emotions. That people were actually hearing the voices of the gods, and that’s what motivated action and life. And that this was actually the natural form of consciousness.
He compares The Iliad with The Odyssey. In The Odyssey, you find a consciousness – a sense of self – that’s more like the modern sense of self. “I think about this”; “I do this.” Whereas in The Iliad, all the characters are told what do by the gods. The gods are communicating with the characters all the time.
So the idea in the book is that this is part of what the human mind is all about. That we originally had something closer to the voice-hearing experience, and then it slowly evolved into a reflective self-consciousness that we call the modern self. And that when people hear voices, as part of schizophrenia, it’s kind of a regression, or a throwback, to this earlier form of consciousness.
This has talked about a lot in the Hearing Voices movement, because it kind of normalizes the experience: “This is part of who we are. We hear voices. We’re humans.”
I have a lot of different thoughts and feelings about that book. I think what we call hearing voices or being possessed, or being in states where we’re controlled, or on automatic pilot – I think that consciousness actually has all these things. I think that all of us hear voices at some point. And there’s a lot of evidence that when they’re alone, or when they’re grieving, or when they’re under high amounts of stress, so-called ordinary people will hear voices. Sleep deprivation – everybody will hear voices.
I like that book because I think it expands our notion of what consciousness is. It helps us include more of what we would call pathological as variations on what it is to be human. He was writing before there was a lot of research about left-brain and right-brain stuff. Neuroscience is now confirming a lot of what he says.
There are actually neuroscience models of the mind that are now saying, “Look, our minds are not unified. There are all these sub-compartments that end up coming together as a composite. And in that composite comes the sense of self. If you ask yourself, what am I thinking about right now, you’ll end up saying, “Well, part of me is like this, and part of me is like that.”
So maybe, under stress, we start to experience these parts as more separate from each other, and that is part of what we call madness.
Q: How were you able to get through school and university, and manage the voices, and get back your executive functions?
A: My executive
functions? You mean, like, my briefcase, and my jacket?
You mean, how did I hold it together? That’s a great question. The answer is, I didn’t. It took me 13 years to get my master’s degree. I went to a transpersonal college called the California Institute of Integral Studies, in San Francisco. And it was actually really progressive. But it wasn’t progressive enough to handle what I was going through. I still felt like I had to be in the closet about my experience.
So I went to a program on process work. It’s much more progressive. So I was able to be open, from the very beginning. I was able to say, “I still have extreme states; that I still struggle with voices.”
I had a horribly hard time at the California Institute. I flunked out. I couldn’t get
through the program. And I went back into a mental health residence. It took me years to try again, at a different school, that was much more welcoming. Not being stigmatized; not being isolated; having people I could talk to; having faculty that supported me – these things were really key.
And I really believe in the methodology and the framework for working with extreme states; it’s exactly what I’ve been talking about: that these states are meaningful. They’re purposeful. They’re part of who I am. They’re not “bad,” even though part of me sees them as bad, because they’re really disturbing.
It’s really hard to be in class, and to suddenly freeze, and not be able to talk for the rest of the class. It’s incredibly shameful and embarrassing. And I got challenged by my professors. It was a huge struggle. But fundamentally, the belief system was that these were meaningful parts of me. And that carried me through.
I had to learn – and I still use – all kinds of different wellness techniques: homeopathy, acupuncture, yoga, meditation. Nutrition is really key. Some of the aggressive voices have messages. I have a voice that comes, that really wants to hurt me. And I need to negotiate with that voice. I can get in a really bad state, until I start ask the voice what it’s saying:
“That was terrible, Will. What you did yesterday was terrible, Will. You’re a horrible person”.
“Why was it terrible?”
“Because you’re stupid”!
“Why, exactly? Be specific.”
“You’re stupid because you did this.”
“What exactly did I do?”
“You didn’t listen to that person. You didn’t answer that question right, here’s why.”
“Now I’m getting some useful information. Now you’re giving me some specific recommendations. You’re not just being mean to me and attacking me, Voice. You’re actually giving me some information that I can treat as a coach.”
I have to understand that behind this negative voice is a coach, that wants me to change or grow, or has information for me. But I have to treat it with openness and curiosity, and assume that it has meaning. That it has some kind of message. But the message is coming wrapped in horrible, horrible envelope of abuse and attack and meanness.
That’s actually a technique that I use a lot, with clients who have bad inner critics.
One of the reasons you have that inner critic is that somewhere, deep down in there, is a kernel of truth. And your inner critic wants you to hear that kernel of truth. And it’s going to keep coming back. But all we can hear is the meanness of that inner critic. And of course we want to push away that meanness.
But instead of seeing it from an either-or perspective, I see it from an ecological
perspective: this is part of me. It’s there for a reason. It serves a purpose, within a system. Let me approach it with curiosity, and then discover what that meaning and purpose is. Did I answer your question?
Q: I get what you’re saying about institutions. But I’ve seen so many people in Vancouver – I don’t know the right answers. But clearly they’re suffering from mental problems, and have nothing. They have no support. It’s called care in the community – and they’re just dumped.
A: I was one of those people who were dumped.
Q: What is realistically possible for them? Or do we need to employ thousands of you? What you do is very particular and intensive. I see a very extensive problem. And there is no treatment, other than the police.
A: It’s the same situation in Portland. That’s why I create support groups. I think one of the answers is creating support groups, to provide places for people to go. Hearing Voices groups. Places where people are going to be able to talk about suicide, or talk about their demons, and they’re not going to be immediately locked up.
A lot of people who are on the street, they don’t want treatment, because they’ve been
treated badly. They’ve been abused. Forced treatment drives people away from the healing professions. That’s one of the reasons people come to me; they know they can talk about stuff, and I’m not a mandated reporter. I’m not going to say, “Well, let’s get you locked up.”
I have taken to the hospital. I keep that open, as an option. But I think the framework of force and control blocks people from being able to access services.
And the peer model – I mean, AA has done a great job. It doesn’t work for everyone, but it’s a place people can go. We need that same model around mental health care, and around peer services. The Hearing Voices movement is a really great approach for that. There are ways that people can provide peer support around a lot of different issues.
But it’s absolutely true – when deinstitutionalization happened, in the 60s and 70s, a promise was made to fund community services. And that promise was broken. We need good, voluntary community services that people can go to.
And so many people who are homeless and on the street do have that diagnosis, of mental illness. But we also have to recognize that being homeless and on the street can itself drive you crazy, rather than the other way around. Our prison systems are overflowing with people who have mental health diagnosis and who are psychotic. They just cold-turkey people off of medication when they arrive in jail – which will make people psychotic.
And the incredible sensory overload – the incredible fear. In laboratory circumstances, prison conditions will start to create psychotic symptoms in people. That’s the kind of environment that we’re putting people in. But then we say, “Oh, it’s the disease.”
Well, actually, the disease is the prison system itself. It is driving people crazy. I think we need a multi-issue approach. That’s why I love giving talks in churches that have social justice committees. Because what you’re pointing out is absolutely right. Homelessness, poverty, the prison system, criminal justice and mental health are all like this.
And I think we need to reduce military spending. There’s just a terrible lack of priorities, that, in the end, is costing more. The Open Dialogue Project that I was talking about – they were able to reduce their mental health spending by 33% by providing intensive services right at the beginning.
They have a team of four people who meet with the family and the person in crisis right away. They may meet for three hours the first day, four hours the second day, and then they meet the third day in a row. They invest all that time and energy because they know it’s going to pay off in the end. The person’s not going to on disability. They’re not going to be in a chronic psychotic state.
So these issues are deeply connected. And one of the main things is that we’ve so stereotyped people on the street as dangerous; we’ve so stereotyped mental illness as dangerous – that it’s the police that respond. And the worst thing that I can think of, when I’m in an extreme state, is to have someone with a gun walk up to me. A lot of people have had – and I’ve had – bad experiences with the police.
My anxiety level goes up, just having – it’s nothing against the police as individuals. It’s just the reality of police policy and police experience. One of the things that we’re working for in Portland – I’m on the board of the mental health association. Right now, it’s not against the law to commit suicide, or to threaten suicide. But if you call 911 and say, “My neighbour is suicidal” or “my wife is
suicidal,” the police come.
Why are the police coming? Let’s get a mental health counselor. Because, tragically, those situations often provoke, and they escalate, and people get hurt. They get shot. They get killed. Or, it’s just the control paradigm, and you get thrown into the hospital, where you’re given the message, “We’re not going to listen to you. We’re going to control you.” If you talk about these experiences, you’re in danger of beign further traumatized.
So thank you for raising that; that’s a really important point. And did I answer your question?
Q: Is there anything happening to train psychiatrists to use encouragement, or optimism?
A: That a great question. And that one, I don’t know if I’m going to be able to answer. But what’s interesting is that, right now, the DSM is being revised. The fifth edition is coming out. It already looks like The Yellow Pages – it’s like a phonebook. And now it’s going to grow. There are all these new ways to be crazy in the DSM.
But now more than ever, there’s a huge debate. A lot of psychiatrists who are involved in the creation of that are really starting to question it. And some of the founders, and some of the early advocates of the DSM are saying, “Wait a second…” There are starting to be questions about the influence of pharmaceutical funding. The free lunches, the cruise ships – all the things they do to influence prescribers.
There have been some moves to have greater disclosure in academic authorship, so that there’s less ghost-writing of academic articles by pharmaceutical representatives, and less manipulation of the research. So, it’s starting to happen.
The problem is that now the training – it’s all biomedical. It’s all about which drug. That’s why people get multiple drugs. You take this drug; you still have a symptom – let’s add another drug. You still have a symptom – let’s add another drug.
People are getting three antipsychotics, two antidepressants, two mood stabilizers. I mean, this is common now. Because the prescribers only know that. And then you’ve got the insurance companies. I’m not sure how it is here, but in the U.S. it’s all 15-minute sessions. And then we have this whole framework, where doctors are supposed to be very, very wealthy and have these expensive lifestyles.
So I think it would be a mistake to say that there’s light in the tunnel here. We’re in a really, really bad situation. But one of the things that’s happening as a result of this, is that people are starting to rely on their own devices. The medical system in the United States is in ruins. We’re not taking care of people. It’s just too expensive for people who are uninsured. And so a lot of people are turning to holistic health. They’re turning to things that they know will work: preventive things that their friends and family have found, that work. They’re turning to practitioners who listen to them, and talk to them.
And this move towards holistic health is starting to have influence in psychiatry. We’re starting to hear about more integrated psychiatry conferences. So, it’s a really big issue, and I’m actually quite pessimistic. But, I know that Robert Whitaker – who wrote the book Anatomy of an Epidemic, which is this incredible indictment of the medication-based paradigm of care around the world – gave a talk at a conference of the American Psychiatric Association. And it was totally packed – standing room only. There was a huge interest.
So, I think a lot of the old guard are maybe too invested in their careers, and in all their decades and decades of prescribing patterns, to be ready to change. But younger one – and that’s kind of always how it is. Change takes a while. So, I do think that more and more people – there was this pharmaceutical bubble in the 90s and early 2000s, and now that’s burst.
There are many more family members, for example, who – we have a very conservative
organization in the United States, called NAMI (the National Association for the Mentally Ill), which is heavily financed by the pharmaceutical industry, and is constantly pushing medications and forced treatment. And a lot of those family members are seeing that it’s just not working.
Their sons and their daughters aren’t getting better, and they’re starting to see, and meet, people who have gotten better. So there’s a questioning that’s happening, because this bubble has started to burst. The pendulum is swinging back. There’s been such an oversaturation of advertising and prescriptions, that people are realizing, after years and years and years, “Now I need to try something else.”
Q: I’ve come to a point where I feel like people who don’t experience some kind of depression or psychotic experience – there’s something a little wrong with them. Because we live in a really crazy world. I have the good fortune of being surrounded with people who are open to talking about feelings, and are honest and open. I’m wondering if there’s a gentle, compassionate, safe way to open up dialogue with people who don’t seem to experience these states. I feel like they’re so human, and I actually have a lot of concern for people who don’t have, or don’t seem to exhibit, that capacity. And I don’t actually believe that people don’t have that capacity. So I’m wondering if you can suggest a safe way to start a dialogue with those people who don’t seem to have the language, or the experience.
A: I think all of us experience some kind of extreme states; that we’re all on a
continuum. Some of us are their more intensely, and for longer periods of time than others. But anybody who has thought their cell phone was ringing and reached to answer it, and it wasn’t – you’ve just had an auditory hallucination. Or maybe you feel like it’s vibrating in your pocket – that’s a tactile hallucination.
These are really, really common experiences. The number of people who believe that they’ve had premonitions in dreams, or that they’ve had some kind of mind-reading experience, is actually really high, in surveys. The thing you’ve put your finger right on is that we’re not talking about it. And I think to normalize it – to get the idea that everyone can relate to these things, if we just create a common language around it, is really good.
And I think everybody’s really, really different. For you, having access to those states enriches your life, it sounds like. For someone else, it might terrify them. They may just totally not want to have that part of their life. So, acknowledging that from the beginning – that everyone’s on a continuum, and we all have these experiences in one form or another – and that we also have different reactions to them. That people are going to have a total diversity of perspectives. And to welcome that, and to be really personal.
We all have gifts of creativity. We all have parts of ourselves that maybe are undeveloped, and want to be developed. And for some of us, those are associated with madness. And for some of us they aren’t. So, really creating a level playing field, so everybody’s included, and recognizing diversity, and the idea of a continuum, can be really helpful.
That’s why it’s so important for us to talk with each other. If you can come out more – if you can speak more publicly – it’s great that you did it here, and I congratulate you for doing that. We need more people in public spaces and public forums to start talking about the experiences that we have.
And at the same time, we need to recognize that if someone is resistant, or if they don’t seem to be listening to us, they still are listening. It does still seep in. I’ve been in talks where someone who seems to strongly disagree with what I’m saying – If I don’t focus on the disagreement, but remain open to them, and then they see that I’m not reacting; I’m not judging – I’m just really curious and interested – they start to say surprising things, that sound like they’re agreeing with me. So, people may surprise you.
But that’s a great point. Thank you.
Q: I’m nursing student, and I just finished a rotation on a psychiatric ward. And I did find it challenging, for a lot of the reasons you’ve mentioned, like this focus on diagnosis and the lack of discussion about meaning. I’m curious about whether you see a role for hospitals.
A: That’s a great question, which raises the issue of my vision for the future of the mental health system. I have to say, my vision for the future of the mental health system is that we don’t have a mental health system. That communities would take care of each other and of ourselves. There would be so much focus on prevention.
I would like to see sleep be taught in schools. Learning about sleep. I’m serious. And we’ve got to deal with bullying. My experiences of being bullied were really central. So prevention is key.
But, in my vision of having no mental health system, would there be hospitals? Maybe. Sure. I mean, there need to places where people can go, where they feel safe. But safety doesn’t mean that the staff feels safe because they know you’re not going to hurt yourself, because you don’t have shoelaces or sharp objects. Safety is you feeling safe, being there.
Do I know people who feel safer in hospitals sometimes? Absolutely. I’ve taken people to hospitals, because sometimes they do feel safer there. Often it’s a matter of the lesser of evils, but that’s where they want to be. They want to be in that safer place.
The Open Dialogue Project in Finland is based in a hospital. They have a whole system that’s based in a hospital. They don’t have many people in the hospital, because that’s where the administration and the training and the supervision take place. They go out to people’s homes.
So, I do think that we need to de-medicalize these problems, and see them as social and community problems. That the family is in crisis, the community is in crisis. How does the community respond? I think we need more ritual response, and we need more public forums. Just get it out of the whole medical framework.
But sure, there’s definitely a role for hospitals. Actually, nurses are often the ones who provide the most effective and beneficial support, because they’re the ones who are connecting. The doctors just come in for 15 minutes, interview, meds, and they’re gone.
The nurses are the ones who are there. There’s a beautiful tradition, within the nursing profession, of care and support and spirituality. Being there, and relieving suffering, and caring for people when they’re hurting. Bringing the image of hope and possibility.
So I would encourage you, in your training and in your work, not to get isolated. To find people who share your values and interests, so you don’t feel like you have to put your values on the shelf to be able to go to work. So that you can be connected, and start to raise and find allies, wherever you’re training. And bring in speakers, and bring in books, and raise issues, and start questioning. And that’s how systems slowly start to transform. And then maybe someone will come along looking for a hospital setting to do an Open Dialogue program. It could be one of the hospitals that you’re working at!
Q: Sometimes the person may have a condition, and if you don’t treat it, then it will be worse next time. Or if a person goes so far off into the other realm that they’ll never be able to come back. I’m curious if you’ve ever found that. If that is something that’s actually true, or just something that we’ve learned. That you have to handle it, or it’s not manageable, and just gets worse and worse.
A: That’s a really great question. And I think there is some truth in that. Let’s see – how to approach this? In general, when people are suffering, the sooner you can help them, the better. That’s just common sense. Suffering that goes on is worse. That’s a general principle. And we’re seeing that, in a lot of the research on so-called psychosis, early intervention is the way to really help people. That you want to intervene early.
I do tend to agree with that in general, and that’s actually one of the bases of Open Dialogue approach. They’ve learned, over 20 years, that if they can reach people within 24 hours – if they can encourage the community to come and ask for help as soon as someone starts acting weird or disruptive, or seems disconnected, or has dropped out of their ordinary social role – if you can get help right away, things tend to go better.
But, that does not mean that early treatment means early medication, or early diagnosis. They treat people without medication, mostly. And they don’t diagnose. And their whole goal is to get them, and keep them, away from the hospital system and the mainstream mental health system. Because they know there’s a huge danger of iatrogenic harm from the system itself. That’s what Jaakko Seikkula says: Why does psychosis persist? Bad treatment. That was his answer.
So, there is definitely truth to that. But early help does not mean early conventional medical intervention.
There are a couple of things you hear doctors say. Its scary. They say that there’s a kindling effect. Once you’ve wired that pathway, its more easy for the disease – there’s a disease process growing. I mean, the metaphor is infection. They think of schizophrenia as an infection and risperdol as an antibiotic. That is the paradigm. That’s where these drugs came from: magic bullets. “Wow, let’s find a magic bullet for psychiatry. Wow! We found it! Thorazine.”
That is the mentality. Actually, there isn’t any convincing scientific evidence for that. There’s a lot of research looking for it, but there’s no evidence that there’s an actual disease process, or a kindling effect.
There’s also this idea of neuroprotection. That if you medicate people – let’s not talk about the side effects of the medications. Antipsychotics cause brain tissue to shrink. They cause tardive dyskinesia. Psychiatric medication attack the basal ganglia. It attacks the frontal lobe. It diminishes mental function. It causes dementia.
But let’s not talk about that. Let’s talk about how it protects the brain from this disease process. That is part of the mythology of biomedical science. It’s a wonderfully apt idea, if your metaphor is antibiotics and infection. It does not hold for schizophrenia, bipolar, mania. And there’s starting to be more daring research coming out, that’s challenging some of that.
Now, is it true – especially around mania, I’ve had people ask this – if someone goes into one manic state after another, is that not a bad thing? Of course that’s a bad thing. Repeated sleep deprivation is massively debilitating to your system. If you’re not eating properly, that is going to deplete you.
Think about it in terms of stress. The more stress your body endures, the you’re your system is going to be crumbling under that stress. The more crumbling, the weaker the person is going to get, the less capacity they will have to heal. It’s like any natural healing process. If you can reduce the amount of stress the person is under, that will strengthen their ability to recover and regain their health.
So in that sense, yes, repeated experiences of crisis are very depleting to the system, and may make it harder for the person to recover in future. But people ask me, so-and-so has been on medications for this many years; so-and-so has been in the system for this many years – is there any hope for this person?
Absolutely. I totally believe that there is always hope for people. We cannot categorize people – we can not say, “These are the ones we cannot help; these are the ones we can.” There is nothing like that in psychiatry. People are able to recover. We don’t have any way of predicting who can recover and who can’t.
It used to be believed that the brain could not generate new brain cells. Now we know that it can. That’s there’s something called neurogenesis. Brain cells are forming all the time. That’s called the learning process. The brain can heal and restore itself.
Just as when I was told “You’re schizophrenic,” that threatened to become a self-fulfilling prophecy, if we tell people, “Your brain is injured. You can never recover. It’s too late,” that encourages people to think that way.
And I think that’s true of all illness, actually. There are miraculous cures that happen. I’m not saying we should be unrealistic about something with a very poor prognosis. But we have to leave that door open, to the human mystery of it.
I think it’s really important to remember that Open Dialogue is based on an ethic of hope; an ethic of expectation. If we can create and generate that for people, then they are, I think, more likely to recover.
The ideas that there’s this neuroprotective process that the medications provide, and that neurogenesis is not happening, and that some people, I think, are just part of stigma. We start to see people as lost causes, or think we should give up hope for them. Ultimately, every program that really helps people is based on hope, and an expectation of recovery.
Stephen: [to audience]
Whatever it was that brought you here tonight – whatever story you’re dealing with, whether it’s that of a family member, a colleague, or someone you’re working with as a nurse in the hospital – I just want you to know that you are welcome here. You’re honoured here.
When I first began to speak about this in the congregation, a year ago, just about everybody in this congregation knew what I was talking about, because they were dealing with issues, or know people who are dealing with really difficult issues.
And I really believe it’s something that we have to talk about. That we have to bring forward, and honour, and to speak to, and to listen to. So this is part of that process: bringing Will here, and encouraging people to be involved in our Madness Radio listening group, where you can listen and speak and be heard.
This has been an experiment for us. We don’t know where this is going to go. We just want it to continue, and to grow.
Please join me in thanking will Hall.