My talk at Alternatives 2012 has just been transcribed by Madness Radio listener Rene Bermudez!
You can listen to the audio of the talk here: http://beyondmeds.com/2012/10/13/willhall-keynote-alternatives/ and read the entire transcript below (thanks Rene!)
Will Hall: Thank you, Dan. Thank you so much. Great. Thank you. Hi everybody, good morning. Good morning, good morning! Thank you so much for that really nice introduction. Everybody can hear me ok? Yeah? Yeah? Ok. [laughs]
I really want to thank Alternatives for inviting me, and I want to thank the translators for helping with access. And, again, thanks especially to PeerLink, to Amy [unintelligible], Dee Hayes, [unintelligible], [unintelligible]. Again, another round of applause for all their great work in putting this together.
I was just reading on the Peerlink website that Nicole is “a pit bull advocate.” I don’t know quite what that is, but we definitely need more of those in the movement. [audience laughter]
I’m really happy to be here. People may remember that a couple of years ago Robert Whittaker and I were almost dis-invited from Alternatives. Do you remember that? And then Alternatives made the right decision and we were both able to speak. [applause] Exactly. And that is the power of our movement, the power of diversity, and the power of getting our voices heard. Bob was talking about medications and a more honest approach, about how medications are helpful sometimes but also can cause a lot of harm. And I was doing a workshop on coming off medications. I’ll be doing that workshop again this year and hopefully next year as well. In fact I’m going to be doing it every year, if I can!
There was a lot of fear about inviting Bob but he was finally given the chance to speak. It was fine, nothing happened, it wasn’t like the sky grew dark and it started to thunder and the power went off in the building or something [audience laughter]. Oh, wait, actually all that did happen! Right? Do you remember? [audience: yeah!]
Just a coincidence. [audience laughter] So, I’m not having a relapse of schizophrenia and my delusional beliefs are not coming back with ideas of reference, because that was just a coincidence. Right, people? [audience laughter]
The reason I like to mention that is because that is significant to me. A lot of my work is about talking about my own altered states, and the fact that I live with a lot of experiences that would be called “symptoms.” You don’t have to get rid of all of your “symptoms” to live a fully-recovered, happy, healthy life. [cheers and applause]
Part of my view is that the universe is talking to me all the time. This is part of my spiritual belief, and I want that to be respected by the medical profession, respected by the culture that I live in. It’s not a sign of schizophrenia or a relapse, in fact a lot of the things that we’re taught are signs of disease can be looked at very differently. Maybe we need to change our relationship with them rather than simply thinking that as soon as they are there we have to just get rid of them and be afraid of them. I continue to live sometimes with suicidal feelings. I’m committed to being here, I’m not going to take my life, but sometimes, yes, I do have feelings that life is not worth living and feelings that I want to die. I continue to hear voices, I feel presences, I hear noises, I hear machine noises, and sometimes I go into very withdrawn and fearful states where I can’t communicate. This is still happening to me even though I am recovered, I’m working, and I’m part of society. Sometimes I get overwhelmed. Recently I was in New York City and– I don’t know if anyone is here from New York, but if so do you know those taxi cabs that say “never hide”? They’re everywhere. Wow, those are– that’s me, those are my taxi cabs, those taxi cabs are me. I’m there, that’s me. So, I have these really strong connections with mystical messages and what psychiatry would call “symptoms of schizophrenia” I just call “the way I live in the world.” I’ve changed my relationship to it.
Just to give you an example of this, do people remember when the movie “Batman: The Dark Knight” came out and there was that terrible, terrible tragedy? It really affected me because the last time I was in a mental health residence was in 1999 and that was when the Columbine tragedy happened, and it was also in Colorado. 1999 was also the year that the movie “The Matrix” came out. If you have any kind of tendency towards going into extreme states, I don’t recommend that you watch “The Matrix” over and over and over again. That’s what I did in 1999 and I went into a really deep, deep, extreme state. When the Columbine tragedy happened I believed that I was very connected to it and was getting all of these messages, and I was terrified. And I ended up having a big crisis and going back into a mental health residence. That was in 1999. And, now, when “The Dark Knight Rises” film came out and the tragedy happened, also in Colorado, I started to make those connections again and I got really scared. I was feeling that the whole universe was just a diabolical thing that’s trying to hurt me. I called a friend and was trying to get some support, and then this bus went by with this giant image of the ocean on it, and I was reminded about one of my biggest fears, which has to down with the ocean and swimming out in the ocean, and sharks. I was really getting into a deep state.
But I felt, “I have to work.” So I get on a plane. I’m going to a training, and when I get into the plane– I almost missed the plane because I was panicky and upset and having a really hard time– I sit down and the guy next to me is wearing a Batman t-shirt. [audience: oh!] Ok. Ok. So now it’s getting really, really, really… it’s getting really something, ok! Finally I get to change planes and get away from this guy. I sit down next to somebody and I notice that she’s reading a book in Spanish, and I kind of look at the title of the book, and it’s Don Miguel Ruiz’s The Four Agreements. I don’t know if people know it, but that’s a spiritual book. It’s a very powerful book that is from the [unintelligible] tradition in Mexico. It teaches about signs and seeing messages from the universe and how things are connected. So now I’m getting really, really freaked out. The whole universe is starting to really do something here! When I get off the plane and I arrive– I was going to South Dakota– it’s dusk. I walk out to get a cab, and I’m sort of hearing stuff flying over my head or something. And I’m like, “What are those, birds?” They were bats. [audience: oh!]
Ok. So– [laughs]– the moral of the story is that I didn’t panic or get overwhelmed like I would have more than ten years ago. I have changed my relationship to my extreme states and I’m not feeling disempowered, I’m not feeling isolated, I have normalized for myself my own worldview. That is a really, really important thing that I’ve learned in my own recovery. I learned to think about my experiences, which used to get called “symptoms” or seen as signs of my illness or signs of relapse, differently. I learned how to think about them differently and have the power– because I am thinking of them differently– to engage with them and work with them differently. I think that this is really important. The issue really is not one of seeing things differently or feeling things differently, or having a different view and experience of the world. The issue really is fear. The issue really is shame. The issue really is isolation. That’s what we need to be working on. Not overcoming these so-called diseases and disorders. [applause]
The title of this talk is “Remembering Our History.” One of the most important things that I think is instructive from the history of our movement and from the history of psychiatry and mental health is that being homosexual was in the DSM as a mental disorder. Do people know this? Being gay was considered being sick and diseased, a mental disorder. And it wasn’t until 1986 that it was taken out. People often say that it was taken out in 1973 but, no, it wasn’t until 1986. Because after 1973 they still had something called “ego-dystonic homosexuality.” If you were gay and it was a problem for you then that was a mental disorder. Well, actually, I thought that being gay was ok, that the real problem was homophobia– that’s the problem! [applause]
We’re now in a different place with being gay: homosexuality was taken out of the DSM completely and we accept diversity and we speak openly about this. This is slowly starting to happen with coming off medications. People are less afraid of it and they are more willing to be open to it. it’s not seen as just a symptom of your illness that you don’t like your medications. Yes, medications work for many people. But, also, some of us they don’t work for. We need help and support when we want to discuss coming off medications. It’s no longer as much of a taboo as it was. I’m going to keep working on that, to make it less of a taboo.
More and more people are joining in on this. I’m doing a workshop on coming off medications here at Alternatives. The same thing is also happening with hearing voices. It actually turns out that hearing voices is a much more common human experience than anyone thought. There are many many people who hear voices who don’t have a problem with them. In fact, if you look you’ll see that the entire Old Testament was written by people who were hearing voices. Right? [audience: yeah!] [laughs] Sigmund Freud, the founder of modern psychology, talked about how he heard voices. So, clearly, hearing voices is something that doesn’t necessarily mean that you are a psychiatric patient and you’re sick. It is the relationship that we have to it, fear and isolation, shame, not talking about it, seeing it as a symptom or sign of disease that is at issue.
There has been a lot of work and a lot of advocacy around this issue of hearing voices that shows that, in fact, it shouldn’t be seen as a disorder or disease. The word is– which I’m hearing from the people who are developing the new DSM– that in the new list of all the mental disorders, in The DSM V, hearing voices is going to be taken out as solely a characteristic of schizophrenia and psychosis. It will be taken out. [audience applause] So this is something that is very instructive, and let’s cross our fingers about that. The hearing voices movement did this really through the power of peer support. The movement started in the Netherlands. It gave people a place to talk about their experiences, to explore their experiences without judgment, to talk about voices without necessarily needing to get rid of them, but to talk about the fear, isolation and disempowerment so that they can change their relationship to that experience.
It was very instructive to me that this movement has been so successful and has given a lot of us a real impetus to work on spreading these Hearing Voices groups. And it’s not just for voices, it’s for all kinds of extreme states. It’s a place that I go and talk about my experiences with “The Matrix” and Columbine and “The Dark Knight Rises”, and all the different things that I went through, without being judged. It helps to bring the fear down around that, and to overcome the taboo.
This is really exciting to me. Do people know that for everything that gets considered psychosis, everything that gets considered a sign of a mental illness, there are people living with it somewhere in the world who don’t have a problem with it at all? [applause] That’s not to romanticize these experiences. They are terrifying, absolutely. I’ve been through so much suffering about these extreme states. But it is to acknowledge the possibility that I can live with them and not be scared, not be held back, not be oppressed by them. That has been really really important for my own recovery. And there is actually some research– in 1998 there was a study in Psychological Medicine. They looked at 1,000 individuals who were patients of primary care physicians. They surveyed them, they interviewed them. They found that between 5% and 70% of these 1,000 people had had some kind of psychotic experience and none of them were psychiatric patients. None of them were having a problem with their experiences. Between 5% and 70% of them. So there is a lot of research supporting the idea that we don’t necessarily have to see ourselves as diseased or sick or having a disorder just because we think differently and have unusual, extreme experiences. So, my goal is to have all of these things taken out of the DSM so that there is nothing in the DSM at all! [cheers and applause] And then people will be able to qualify for services without having to get a label or be told that they are sick.
If someone is experiencing domestic violence we say, “Wow, we need to help you, society needs to support you” without saying that it is a medical issue. It’s a social problem that needs to be met with help and support, without taking it into a whole medical framework. So this is very important for my own recovery and I think for a lot of people’s recovery: to not necessarily see everything we go through as “symptoms,” but to use a different kind of language and be open to the experiences. To get help around the fear, the shame, and the isolation. One of the things, of course, that we should be open to is the way in which so many of these experiences are related to trauma. When I go into these states– everything is connected, I’m looking for little signs, I’m totally on edge– in a lot of ways I’m remembering what it was like to grow up in my family with my father. I never knew what was coming next, I had to look for little signs and signals. It was a very paranoia-inducing environment to live in, my family, because my father was so unpredictable as a result of the trauma that he had survived.
Now I have a different framework: I had a normal response to an extreme situation. That normal response, as a traumatized person, has given me great suffering. But it has also given me incredible gifts. In many ways, trauma can be an initiation for a lot of us.
This view of trauma, which acknowledges that it is important and one of the factors that is involved with psychotic experiences, was not looked at for many years. But it is starting to make a comeback in some of the research. There was just recently a study, in The British Journal of Psychiatry on April 20th 2011, that looked at more than 7,000 people in England. It concluded that “the association between childhood sexual abuse and psychosis is large and may be causal. These results have important implications for the nature and etiology of psychosis and for its treatment, and for prevention.” That is The British Journal of Psychiatry saying that child abuse may be causal for psychosis. I’m quoting a lot of research studies these days, because I was at The American Psychiatric Association and that’s kind of the language that they speak. But it’s also a good sign that things are changing.
One of the things I think we need to really recognize is that one of the experiences that people can live with– and it’s a very difficult experience, but it’s something that I live with and I think we overreact with fear and shame and stigmatization– is the experience of suicidal feelings. One of the things that happens when you have suicidal feelings and you talk about them is that you receive worse treatment. We all know that some people do appreciate that they were put into the hospital, that they do find that that was helpful. But for a lot of people it is very traumatizing and our movement is really about re-thinking forced treatment.
If we want to think about forced treatment in new ways, we need to start thinking about suicidal feelings in new ways. It’s much more common than we realize. You sometimes feel like you want to end your own life. It doesn’t necessarily mean that you are going to do it. I’m committed to being here, but sometimes I do have those feelings. We create a situation where people aren’t free to talk about it. That is terrible, that is backwards. People need to be free to talk about their suicidal feelings. Again, looking at the research, one of the groups that is doing some of the most interesting and honest research about suicide and suicidal feelings is the US Army. They are so interested because there are so many people in the military who are ending up taking their own lives. So the Army is really looking at this question: how can we predict suicidal behavior? How can we predict who will attempt suicide and who won’t?
There was a study by Gregory Gahm and Mark Reger, by the Army, called “Army Suicide: A Prerequisite to Suicide Prevention.” It states clearly that they cannot predict who will attempt suicide. They can’t predict it. They looked at lots of different studies, and they can’t predict who will attempt and who will not attempt, even with all the risk factors. They said that, because of this, what happens is that they are assuming that people are going to attempt suicide. And therefore they are using very heavy interventions.
In the study it says, “Well-intentioned interventions are surely targeting many for whom the intervention is not needed. Clinicians are committing numerous false-positive errors. Many individuals who are not truly suicidal may be targeted with intrusive interventions and suffer adverse effects because of the inability to predict suicide. Specific interventions to prevent suicide in a high-risk individual may violate confidentiality, harm the therapeutic relationship, increase stigma, decrease the probability of suicidal ideation in the future, and increase the probability of treatment drop out.”
That’s the US Army basically supporting the perspective that we need to talk about these experiences and not react with fear and locking people up. [applause]
The real effect of risk-assessment and of intervening with people with forced treatment, is to deal with the fear that the providers have. It is a way to deal with the professionals being afraid and being responsible, and being blamed. We need to take that on head on, because that is a really big issue that is not serving people. It is about cultures of fear in agencies and in hospitals. But even if you have all of the risk factors you can’t predict suicide– it doesn’t mean that we can’t try and help and support people, but one of the best ways to try to help and support people is by giving them a space to talk and peer support. And that is what we are all doing here, and that is what we are all about. [applause]
I’m glad to hear that there is so much support for this perspective because we all know that it’s true that there is a lot of really great work going on around the country now. One example is in western Massachusetts, where they have a suicidal feelings/ alternatives to suicide support group. It’s really beneficial for people, because if you give people forced treatment, if you lock them up, what do they learn? They learn not not talk about feelings of being suicidal, right? And that’s totally backwards. People need to be free to talk about these experiences.
I choose to live with my suicidal feelings, sometimes I’m working on them, sometimes I have less of them. I see them not as a sign of disease or relapse, but as a message. I have a deep commitment, a spiritual commitment, not to take my own life but I don’t see suicidal feelings as a sign that someone is giving up on life. When someone gives up on life, they go to work in the morning, they come home, they sit in front of the television, [audience laughter and applause] they stay up late watching David Letterman, they wake up, they go to work in the morning. That’s what giving up on life looks like. [laughs] Right? That’s giving up on life. [audience laughter and applause] We just don’t have a label for that. It’s called being “normal.” Right? [laughs]
Suicidal feelings are a desperate need for change. You’ve got to make a change in your life and you need it so desperately that you’re not willing to continue your life unless that change happens. You have that desperate need for change but you feel totally powerless to get that change in your life. So when I have these feelings, that’s how I encounter them. I encounter them as a message. I ask myself, “what is it that needs to change? How can I get some power to change?”
And we should remember that many cultures see sadness and melancholia and suicidal feelings from a very different perspective. We’ve just decided to pathologize them and turn them into signs of a disease rather than seeing them as part of the human experience that needs to be met with compassion, understanding, curiosity, and– above all– deep, deep connection and listening. [applause]
I didn’t want to just focus on my own personal experience. One of the things that I did as part of preparation for this talk is– does everyone know what “evidence-based practices” and “evidence-based research” are? You’ve all heard of this “evidence-based medicine”? I think we’ve heard a little too much about it! Well, I realized how important this is so I decided to develop a survey as a way to develop my talk for today. I did a survey online and had a lot of people answer questions about what they wanted me to say, what they wanted me to focus on. I thought it was really, really important to do this survey so that my talk today would be an EBK. Do you know what an EBK is? It’s an “evidence-based keynote.” [audience laughter] This is an evidence-based keynote. [laughs] It’s a scientific instrument called “survey monkey” [audience laughter] and you can go to my website, willhall.net/alternatives2012, and you can read the responses.
A lot of them were really interesting and thought-provoking. One person– this is very creative– I asked “what should I say at Alternatives?” and one person just wrote, “Give them hell, Will.” [audience laughter and cheering]. I thought that was cool. Somebody else said that I should discuss “the power of psychiatry and what we can do to take it away.” I thought that was great. I asked people, “what should people in different agencies, different mental health agencies, do to truly serve people’s recovery?” One response that I had was that all mental health agencies should have 24-hour streaming of Madness Radio. That was pretty cool! [laughs] One person just wrote “One word: skateboarding.” And I just thought, “Wow, finally, somebody who understands the deeper meaning of my message!” [audience laughter] Does anyone know, does skateboarding actually have a Medicare billing code yet? Can we work on that? That’s really important. Get that on the agenda.
Someone else said, “Dear Will, I’m sure that you’ll cover all the bases without needing more input.” I thought that was really nice, so thank you for having confidence in me. A lot of themes, of course, were the themes that you’re hearing at the conference workshops and other keynotes. There was a lot of interest in Open Dialogue. Dan and Karen are doing a workshop on Open Dialogue. Let me give you a really quick little “elevator speech” on what Open Dialogue is.
We’re really interested in recovery, right? For psychosis, for schizophrenia, for experiences that get labeled things like “schizophrenia,” “bipolar,” “psychosis.” You have to look around the world and ask, “where are they having the best results for recovery?” Right? It’s common sense. Let’s look around the world to see where the best recovery rates are for schizophrenia. In a 5 year study on Open Dialogue in Western Finland, 82% of the people recovered and didn’t have so-called psychotic experience. 86% returned to their studies or a full time job. Only 14% were on disability. Only 17% had relapsed during the first two years. These are incredible recovery outcomes. Incredible. It’s all very well-documented. It’s all evidence-based, they’ve done lots and lots of research on it. They’ve been doing this program for 20 years.
You know what one of the keys to the success of Open Dialogue is? Lower use of medications. Lower use of medications. [applause] And they’re not anti-medications. Many people do use medications in the Open Dialogue program. But they use it very carefully and they have a much, much lower use of medications. This has been a very innovative approach.
One of the other very interesting principles of Open Dialogue is that they don’t believe that the problems that get called “psychosis” are inside of individuals. They don’t believe that the problems are inside of individuals. [applause] We have something like this in the social model of disability, where the idea is that the problem is the society not accommodating people rather than with the person who has the disability, because it’s really a form of difference.
In Open Dialogue they believe that the problem isn’t inside of an individual, the problem is with the relationships between individuals. And it’s the relationships that need help. And so they bring in families, they bring in neighbors, they bring in co-workers, and they talk in a social way as a group and they talk openly. The doctors don’t sit there with a clipboard and go into another room and then talk privately and in secret about you, and then create their notes. That, to me, is totally a set-up for creating paranoia. They are studying you. They are watching your every move. They are talking about you behind your back. In the Open Dialogue approach they discuss everything openly with the person who needs support and they do it with the family, with everyone there.
So I want to say that this is one of the things that I feel very strongly about: whatever kind of Cold War has developed between survivors and family members, we need to build bridges to end that Cold War. We need to start communicating with our families and connecting with families and bringing the families in. It doesn’t mean that we need to stop talking about child abuse or the trauma that people have experienced in families. But families are suffering, too. We really need to bring them into the dialogue because they are a key to helping people recover. This has been a key part of the approach in Open Dialogue. I’m very excited that there is a workshop happening here about Open Dialogue. I’m very inspired to be learning more and studying it. That was one of the many things that people talked about in the survey that I did.
Another thing people mentioned is– someone wrote, “For heaven’s sake, Will, please keep hammering at the importance of safe, slow tapering off of psychiatric medications.” This is something that I’m doing a lot with my coming-off-medications work. It’s not about saying that people should come off, its about educating people so that they have options. One of the big messages is that when people go too fast and they end up having big problems, what they are experiencing often is the fact that they went too fast. They are having withdrawal symptoms because of the fact that they went too fast. But what does the doctor say? “That’s a sign that your illness has come back and you need medications. You can’t try it again. Don’t try to go off medications. You need more medications.” Instead of helping the person and telling the person, “Hey, let’s do it smarter next time. Let’s slow down. Let’s stop and think. Let’s get some supports in place. Let’s discuss this, let’s figure out alternative ways that you can support yourself, and alternative wellness approaches.”
So that’s a big, big message of The Harm-Reduction Guide to Coming Off Psychiatric Drugs. It’s now in it’s second edition. It is creative commons copyright, so you have advance permission to download this and print it as many times as you want. It’s being used in many countries, in lots of different agencies, in peer support. It’s being used by nurses, by some psychiatrists, and in some clinical settings. It’s been translated into five languages. Just recently it was translated into Bosnian, which is very exciting. So, that was a big interest in the survey.
A lot of other things that were talked about in the survey– and, again, you can read about it on my website at willhall.net/alternatives2012 — people were really interested in self-directed care and self-directed spending, and peer-run respites, which are a very inspiring alternative that people need to have in every community, Every community needs a peer-run respite. Peer-run warm lines.
In Oregon we have the David Romprey warm line, which is a model for other communities around the country. Certified peer specialists. We need to really support this. You certified peer specialists need to get paid more. You need to get paid more! [audience cheers] Do you have a union? That’s how you get paid more in this society, you form a union. So this is really important. I want to see certified peer specialists as a pathway in a ladder of career advancement. I want people to get their BAs and GEDs, high school diplomas, and go on and get your master’s degrees. It’s not that hard, it’s a psychological obstacle. You can do it. Some of you should even become nurses! Oh my god, some of you should even become psychiatrists! [audience cheers] I mean, why should they go to the top of the ladder? Everyone should do it. Don’t just be stuck in a low-paid certified peer specialist position. The certified peer specialist movement is the beginning of a bigger movement of people coming out about their experiences and using them to support people. [applause]
Have you heard this joke: “How many peer specialists does it take to change a light bulb? None, the light bulb needs to learn to change itself.” I think we came up with that in South Dakota. Something about the bats and Batman.
A lot of the survey responses were people talking about nutrition and food allergies. How many people here realized– I mean not everyone is the same around allergies, but a lot of us– how many people know that they can’t eat gluten because it contributes to their mental problems? Thank you so much for raising your hand and, if you’re too shy, that’s fine too. I want all of us to speak up more because this is a big issue– food allergies is a big issue. The food is getting better and better at Alternatives. Yay. [applause] So let’s make it even better next time and let’s keep bringing awareness of nutrition and diet. The food that I ate in the hospital was horrible and it made me feel worse. Exercise is really important.
And the other thing that I think is really important– I’m going to be talking about this a little bit in a moment– is that we need to really recognize that we are a culturally, ethnically, and racially diverse society. We need to overcome legacies of oppression, racism, sexism, and really recognize that people need to be welcomed who are part of that diversity. African Americans, Native Americans, Asians, Latinos. We need to have bilingual services, we need to be welcoming people from different perspectives and make sure that we have a multi-cultural, inclusive, and culturally responsive movement. This is very, very important. [applause]
We don’t live in a post-racial society, folks. Racism is alive and well and it continues in new forms. It’s very important that we be aware of this. One of the things that people talked about in the survey as well was the issue of shame. This is really shame, fear, isolation, disempowerment. This is really what these issues are about. Problems that people have going into mixed-gender hospital wards can be very traumatizing if you’re a sexual abuse survivor. For women, especially, if you’re in a ward where there are men, it can be very very problematic and problematizing and humiliating and just add to shame.
This issue of– I don’t smoke cigarettes, I have problems with cigarette smoke– but believe me if I smoked cigarettes and I was in an extreme state and I went into the hospital, I don’t want to cold turkey off my cigarettes! That’s crazy, I mean come on. People need to be able to have their cigarettes in the hospital. Don’t add another level of stress. In the name of their health? I mean, come on, it just doesn’t make any sense to me.
Another thing that’s humiliating and contributes to shame is that people go into hospitals and the first thing that happens is their cellphones get taken away from them. I mean, come on! Let’s ask some of the nurses and psychiatrists and people who work on this stuff, “If people took your cell phone away from you, how would you feel?” You’re going to be distressed without your cell phone, it’s very common for people to be distressed without their cell phone! Let people have their cell phones in the hospital. I mean how hard is that? [audience member: woo!] Exactly. They say that it is about privacy and cameras, and I have a solution for that. It’s called tape. You tape up the lens of the camera, and then that’s not a problem. Actually I’m on the board with the Mental Health Association, and one of our board members, Jenny Westberg, did some research. It turns out that there is actually a kind of tape that you can put on a cell phone that will show you if the person has taken it off and put it back on because it changes color. In a lot of corporate environments they have the same issue with cell-phone camera privacy. So privacy concerns are an excuse. We can find a way to let people have access to their cell phones. And of course there are many ways in which the humiliations and shame in the hospital situation continue and many of those– there are some really powerful stories on the survey, so I encourage people to read that if you get the chance.
One of the other things is — Dan mentioned, “I must not sleep.” Well, I tell you, sleep is on the top of my agenda for my wellness. I’ll tell you. Sleep is really, really important for me. [scattered applause] And sometimes I go without sleep. I go without sleep and I know that I’m going to go into a little bit of an altered state, but that’s my choice. Sometimes I like those states a little bit. NOT TOO MUCH! 10% mania works really well for me. More than 10% and I need to get to sleep. But one of the things that we can do– this is simple, folks– we can dramatically improve the recovery rates for bipolar disorder, for mania that gets diagnosed as bipolar disorder, by seeing it as a sleep issue. [audience cheers and applause] Very simple.
When someone goes into a so-called manic state, they go into the hospital and what do they do? The hospital gets them to sleep. They clobber them over the head with meds to get them to go to sleep, but it works. The person comes out and then the problem is that they just say, “You have an underlying disease called bipolar disorder and now you need to take meds for the rest of your life.” No. That’s going to risk major problems with those medications. And, also, it doesn’t understand what really happened to the person.
Educate the person to get them to sleep and then get them off the medications that help them sleep, gradually. Educate the people around them, friends and family. Teach them that, for whatever reason, it’s a mystery, you are someone who goes into altered states and if you don’t want to go into those altered states– maybe you do sometimes, but if you don’t want to– then you really need to take a look at your sleep, because sleep is a trigger. And I think that this is a huge awareness issue around mental health issues and I personally would like to see us start a new national holiday called “National Sleep Deprivation Day.”
We can all celebrate National Sleep Deprivation Day by not sleeping for 24 hours, and then talking in our communities about what it’s like to not sleep for 24 hours. We can realize that it’s not just people who have the bipolar diagnoses who are vulnerable to getting crazy if they don’t sleep. So that’s really important.
There’s a lot of really practical innovations that we can implement right away and I was very honored to be able to be invited– honored and also terrified– to the American Psychiatric Association, and I talked about these issues, and I presented them with a lot of very concrete things that they need to look at, changes that can be made in mental health treatment settings. One of the things that came up in the survey– and it comes up so often in my work, because I’m a therapist now, and in my work at Portland Hearing Voices and doing peer support– is that so much of our issue is not mental health. So much of our issue is POVERTY. It’s poverty. [applause] People are suffering from poverty. Poverty can drive you crazy. The stress from poverty can drive you crazy. Poverty is the issue. Money is a really, really important and taboo subject in our country. We are medicalizing poverty and calling it mental illness rather than facing issues of poverty and empowerment head on.
There was an incredible study that was done by my friend Alisha Ali at NYU, where she took people who fit the criteria for clinical depression and she didn’t even give them medications, she didn’t put them in mental health treatment, they didn’t go to the hospital, none of that. You know what she did? She gave them enterprise loans to start small businesses collectively and collaboratively. And then, after these people diagnosed with clinical depression had started their businesses and were making their money, guess what happened? They were no longer depressed. Wow. Ok. You can’t quite put that in a pill, so it’s a little bit problematic to market that. That’s why we don’t hear about those kinds of solutions.
But we need to directly address poverty issues. Our movement in a lot of ways is an anti-poverty movement. I want us to see our movement as an anti-poverty movement, and ally with the anti-poverty organizations. Like Jobs With Justice, for example. It’s a great organization to ally with. The Occupy Movement is an incredible movement for us to be part of.
I have to say that we need to really rethink the way in which our disability system discourages people from getting off disability. I came off medications, yeah, I came off medications and that was hard. But me coming off disability was way harder than coming off medications. [applause] Has anybody else here tried to get off disability? You can’t just call them up and say “stop sending me the checks, I’m no longer disabled.” They keep sending you the checks. You have to set up bank accounts, it’s a really complicated. Then they say, “Well, you say you are no longer disabled, but we’re going to evaluate you, because maybe you were no longer disabled five years ago, and now you’re going to have to owe us all that money.” And you just get scared and want to hide and not deal with them. The VA system is a little bit better, I think, with regards to disability benefits, than SSI and SSDI are.
We really need to address this issue of poverty. And the belief that we can’t work because we have emotional distress, this is something we need to really rethink. Actually emotional distress– a lot of people go to work when they are emotionally distressed. Emotional distress is very common in our society and I spoke with some clinicians in Austria. I was in Europe recently because I have the honor to be able to travel and teach. They do this really interesting thing in the clinic there. Every morning the staff, the clinicians, and the people with diagnoses all get together and they rate their emotional experience, their mood on a scale of 1-10. And all of them do this: the staff, and the clients. The clients learn that sometimes the staff are having a harder time than they, the clients, are. Big surprise, right? They don’t have a psychiatric diagnosis, but maybe they feel like life isn’t worth living, maybe they feel terribly depressed.
So people get this message that , “Actually, I can work, I can be part of society and still be having emotional struggles. Having emotional struggles doesn’t mean that I’m a person who is just a broken person who can’t be a part of society.” Because these staff-people are doing it. And then they get into conversations about what it means to have distress and how all of us help our own wellness. And a lot of times the clients have a lot of tools and know a lot about wellness that the staff don’t know about. I mean, peer support is something that mental health staff need, too, everybody. [applause]
The poverty issue is really, really important. We have a terrible set of policies around maternity leave and childcare. It would really help our society with mental health if we could improve maternity leave and childcare. A lot of times people go into extreme distress– they can’t work, they have a really hard time taking care of themselves, they can’t live on their own, and they have nowhere to go– because that’s the way this society is set up. People are living on the edge, there are no extra rooms, there aren’t extended families, there are not people who are at home not working, so people don’t have anywhere to go. So they end up in the system.
That’s a poverty issue and it’s about our society not being supportive of people who are having a difficult time economically. So I think that we really need to go back to our roots; our roots are in the civil rights movement. Our roots are in the lesbian and gay movement. Our roots are in the anti-war movement. Our roots are in the women’s movement. Our roots are in the movement against poverty. Reverend Dr. Martin Luther King Jr. talked about his values: against war, against racism, against poverty. And those are our values, too. [applause]
Everyone should vote. I can’t tell you who to vote for, but please vote for Obama. [audience laughter and applause] [laughs] That’s a no-brainer. But if you don’t vote for Obama, that’s ok too. You’re still welcome to be part of the movement. [laughs]
I was really inspired yesterday hearing the talk about our roots and liberation movements. I really see this as a human liberation struggle. The disability rights movement has made society better for everyone with disability access. Everyone has benefitted. Just to give you a very tiny example: those curb cuts, ramps, this helps everybody. It helps people with strollers, people with shopping carts, everyone has benefitted by the disability rights movement taking the lead and changing our society. It’s true of our movement, too. We can help everybody with our values. It’s a human liberation movement. [applause] And we’re the best kind of human liberation movement; we’re a diverse movement, we don’t always agree on everything, we’re unruly, we’re chaotic. But that’s ok, that’s part of what being a movement is all about.
We do live in a new social context. I love that Joe Rogers said yesterday, “we need more protests.” Because we do need more protests, we need to root ourselves in protest. We need an inside-outside strategy. Have people heard about this idea? An inside-outside strategy is something that people have been talking about all the way back to the 60s, and all the way back to the labor movement in the ’30s. It is about how you work with institutions of power and how you work with people in the streets, and it’s very very important. I believe that I embody this. I’m a survivor, I’ve been diagnosed with schizophrenia, and I’m also a therapist now, I work as a professional. I did go and talk to the APA but at the end of my talk I took a cab across town and went to the protest and protested the APA. [applause]
Any time you are in a political struggle, and your opponent– Sun Tzu talks about this in the book The Art of War– any time your opponent has no way to escape, that’s when they’re the most dangerous. So when I told the psychiatrists at the APA that I was going to the protest, I invited them to join us at the protest. I didn’t say “we are protesting you.” I said, “We are protesting the APA, please come and join us.” A couple of them actually did! A coupe of them actually came to the protest and joined us.
I really like the idea of sitting down at the table– “yes” to sitting at the table. But we also need to be writing the agenda at the table. [applause] And I think that when we sit at the table we all need to talk about recycling the table and building a nice swimming pool instead. That’s what we need to do. Every movement struggles with the same issues that we struggle with. Every movement challenges the science. Who is more intelligent? Who has genetic problems? Every movement struggles with the language. Every movement struggles with stereotypes. So these are really important lessons that I think we have to learn. We are in a new social context, though.
I am reminded of the fact that things are different now. It’s 2012… 2012? Right. [laughs] I am reminded that the last time Alternatives was in Portland was in 2006 and that a man named Jim Chasse had just been killed by the police. Do you remember that? I think it’s fair to say that Jim Chasse’s death has been a wound on the soul of the city of Portland for many, many years. It’s just tormented us. Alternatives joined a vigil of 500 people.
Jim Chasse was killed by the police when he was doing nothing wrong. The police went after him, he ran. If the police come after me I might run, too, because the police are scary, ok? He was diagnosed with schizophrenia, the police jumped on him and beat him. They didn’t give him proper hospital treatment and he died. The response from the police to Jim Chasse being killed was shameful, and the response from the city was shameful. They wouldn’t remove the officers from duty. There was evidence of a cover-up. The city finally had to pay 1.6 million dollars in a lawsuit to the family. I mean, come on, that money can be spent much better than defending police who are killing people with mental illness.
So that’s one of the reasons that I joined the board of the Mental Health Association of Portland. They are doing really great work, advocacy work, often alone when everyone else is sort of saying, “Well, this is a tragedy and we did the best that we could.” Of course, yes, it is a tragedy for the police, too, it is a terrible tragedy for the police. We know that the police can do better and we know that the city can do better. The Mental Health Association was pushing and pushing and pushing and finally the federal government stepped in and drew the conclusion that, yes, there was a pattern of excessive force against people with mental illness in Portland.
That was a recognition and a vindication of the fact that, for years, we were saying this in the streets as advocates. This is a very, very disturbing thing that is happening around the world and around the United States: we are being killed. We are being terrorized. We are being beaten by the police.
I believe that police don’t want to be in the position of interacting with the mentally ill. They are being put in the position of being counselors because there are no community services. The police don’t want to be in that position. They don’t want to be playing the job of counselor or therapist or responding to people with mental health problems. Society has put them in that role unfairly. And, as a result, many people are getting killed. Things escalate quickly. The federal government does keep track of killings by police. If you go to Wikipedia and look up “law enforcement killings in the United States” you will find that there are descriptions of what happened. It’s very disturbing. Especially because many people are in some kind of altered state or extreme state or mental health distress, so many people are having suicidal feelings, and we know that there are better ways to respond to those people.
This is something that is changing in Portland. Portland is trying to get police out of the business of responding to suicidal feelings. They shouldn’t be coming, 911 shouldn’t be sending the police when someone is suicidal. Send a counselor. Send a peer specialist instead. The city is trying to change this but there is also a big move in our society to militarize these issues, to treat mental health as a public safety issue. It’s not a pubic safety issue. In Portland they want to give park rangers guns. I mean, come on! That’s completely the wrong direction to go in. It’s fear, it’s control, it’s power, it’s the misuse of power. We need to really think about changing this relationship and we need to reform the police’s relationship to mental illness.
But the best way to reform the police’s relationship to mental illness is to make it so that they have no relationship to mental illness, to get them completely out of the whole mental health equation and get peer specialists and counselors and community services there instead. This is a big, big challenge and this is a new context for our movement. We need to speak more openly about it and we are already doing a lot of work training the police, which is great; we need to build those bridges. We need to really, really address this issue. It’s so pressing. [applause] Thank you.
There’s one issue that I really– this is the most important thing for our future as a movement and it needs to be talked about more. The title of my talk is “Towards Our Future” or “Thinking About Our Future.” We need to recognize that one of the biggest mental health providers right now is the prison system. This is a very disturbing situation. It’s very disturbing. I’m just going to read you a few facts, which should be shocking. They are shocking because the situation with the prison and criminal justice system is absolutely disgraceful.
The United States now incarcerates more people than any society in human history. Since 1972 the US prison population increased from 300,000 to 2.3 million people. One in every 31 adults in the United States is in jail, prison, or on probation or parole. This is driven by the War on Drugs: approximately 80% of drug-related arrests are for possession. The huge number of people in prison or locked up who are locked up for nonviolent crimes is driven by the war on drugs.
Since the 1990s there was a huge increase in drug criminalization. 80% of those arrests around drug criminalization were for marijuana. How can we be prescribing people to take Xanax and Seroquel and Geodon– I could go on and on– and then tell them that they can’t smoke marijuana? It doesn’t make any sense. I think we need to decriminalize marijuana. This is a really important thing that we need to do and that’s not to say that you should smoke marijuana– I mean, come on! Alcohol is not illegal in the United States and I’m not recommending that people drink alcohol.
It just means that its illegality is driving our prison system and we really need to look at this and think about decriminalizing. Oregon is a place where that is changing and it has changed in other parts of the country, but in general we have a law-and-order, punishment mentality and that breeds fear and it breeds more criminals.
It has not been shown that locking people up reduces violent crime. There’s a terrible use of informants where, if you make a deal with the police and you inform, then they let you off. There is mandatory sentencing and excessive sentencing. People get five-, ten-, and twenty-year sentences for nonviolent crimes. Politicians prey on fear, they use stereotypes to get tough on crime. It’s a Hollywood, television mentality. And we know that the issues of poverty and the prison system are completely connected because, come on folks, money buys justice in this country. If you can afford a good lawyer, if you’re privileged, you’re going to get off where the person who doesn’t have the money is not going to be able to get off. This is absolutely connected with poverty issues and we need to address it.
You know, my father was in prison, my grandfather was in prison. I only spent a couple of days in jail, but these are brutal places. They are terrible places to send people. If you’ve got mental health problems, of course they make them worse. And if you don’t have mental health problems, they will cause mental health problems. [applause] The best way to deal with mental health issues in prisons is to not lock people up in the first place. Let’s not lock people up in the first place. Let’s find alternatives. Let’s deal with drug issues with treatment and support rather than criminalization and locking people up. And also by offering jobs and community services and dealing with poverty.
We have to say that the prison system is a racist system. We have to look at this very, very straight-on and be very clear about this. The prison system is a racist system. [applause] Whites and African-Americans use drugs at the same rates but African Americans are ten times more likely to be locked up for drug crimes. African-Americans make up more than half of all prison inmates, although they are only 12% of the population. Blacks are incarcerated at a rate seven times as often as whites. And I am not exaggerating when I say that the situation with racism and the prison system is a continuation of Jim Crow and the slavery system in the United States today. [applause]
There are more African-Americans under correctional control of the criminal justice system today– in prison, in jail, or on probation or parole– than were slaves under slavery. It’s shocking. It’s disturbing. And there is incredible leadership happening in the African-American community to get us to wake up to it. The African-American community wants us to wake up around these issues, and as a white person, as someone who is educated, I’m more insulated and protected. I’m not as affected by these issues but I want all of us to wake up to these issues because racism and the prison system are everybody’s issues. They’re everybody’s issues. [applause]
Prison is a brutal and traumatizing place and one of the things that is the most disturbing about the United States today, and about the prison system specifically, is the way in which prison rape has become so common. It’s become an accepted part of our culture. More than 70,000 prisoners are raped every year. This is a trauma-creating, mental-health-problem-creating experience people have in prison. It’s wrapped in shame, it’s absolutely taboo to talk about. Prison rape is a very, very serious issue. It is routinely held out as a threat. Think about it– it’s accepted as part of our culture.
Think about how many times being raped in prison is joked about. Think about how many times it’s talked about in TV shows and movies. It’s an incredibly disturbing fact that speaks to the deep, deep… I don’t even… I’m losing words because this is so disturbing to think about. I have friends who have been raped in prison. I have friends who have been raped in hospitals. And… [sighs]. Our movement needs to take on the issue of prisons in our society. We need to work on this. [applause]
And where will the leadership come from for a movement around prisons? The leadership will come from prisoners. The leadership will come from formerly incarcerated people, according to the same principles as the peer recovery movement. And so we need to build alliances and build bridges. People will say, “Well, come on, we can’t mix these issues. It’s not in our grant contract to talk about decriminalizing marijuana, it’s not in our grant contract to talk about the new Jim Crow and racism and the prison system or to deal with the fact that so many prisoners are non-violent offenders.”
To anyone who says that I say this: this is exactly why we need to be a liberation movement.” [applause] Because if we ignore this issue then we are ignoring one of the most important issues facing our country today. I think it is the most important issue, I have to say. The most important issue. And we have something very powerful to bring with our mental health perspective, because people need to be healed from the shame and trauma of being imprisoned.
I want to just say, in closing, that Portland Hearing Voices is starting a support group for people who have been incarcerated. I encourage people to develop support groups and peer support for people who have been incarcerated and also to learn about the transformational and restorative justice movements. We don’t have to lock people up. Even for violent offences there are alternatives to brutalizing people in prison, there are ways that we can use community responses. I think that if Dr. Martin Luther King, Jr. were here today, if he hasn’t been assassinated, we know that he would be taking leadership on this issue. Wouldn’t he? [applause] Absolutely.
That is the powerful spirit that our movement is all about. The spirit of the inspiration that Dr. King gave so many of us and continues to give many of us, let’s continue in that spirit. I really want to thank you for the opportunity to speak with you today and I am happy to be here. And I want to open up– we have a few more minutes– the floor to questions or comments. I especially want to invite anyone who has been affected by incarceration– anyone who is a former prisoner or has been in the criminal justice system– who might have something that they want to say about this issue. We have some microphones that are going around. I know that this issue has affected a lot of us.
Audience member #1: Hi, I’m Janice Sorensen. And, Will, something right in line with this– and, had I seen your request for “what should I address for my Keynote” I would have mentioned this– is the Occupy JRC. The Judge Rotenberg Center in Canton Massachusetts. It’s as close to incarceration as you can get. Students at the school, children at the school are given a fanny pack with a shock device in it and for a “misbehavior”– and please see the quotation marks around that– they are administered a shock by any one of the staff-members. These are not — not that it would be ok for therapists or psychiatrists to administer a shock, either, but this is just anyone who is working there who has the ability to administer a shock. Andre McCollins was shocked 31 times in one day. His initial shock was for not removing his jacket. You can go to the Occupy JRC website online, just google “occupy jrc.” It’s hard to watch the video of Andre McCollins. There were remote cameras in the room where he was shocked. He was strapped down on a board and shocked 31 times and many of the shocks were for “tensing up” after receiving a shock. It is horrifying footage and this is where we need to demonstrate. I heard on our first night someone saying, “Our movement needs to demonstrate more. We need to get back to that.” Here’s the opportunity. Here are people who are utterly and completely disempowered and who need our support, who have no voice at this moment. And it’s just horrific. So please go to and support the occupy JRC movement. The Judge Roteberg Center. And, as you can guess, because it is the Judge Rotenberg Center there is a lot of pushback and it’s a pretty tough wall to traverse. [applause]
Will Hall: Thank you. Thank you so much, Janice. Thank you.
Audience Member #2: Thank you, Will. My name is Angela Agnew and I am a survivor of the mental health system, the military system, the criminal justice system, and the trauma that we experience while we are incarcerated. The trauma of witnessing other people being traumatized is terrible. Even coming out of the criminal justice system and having to deal with the overlap of mental health, substance abuse, criminal justice, and trying to fit in, being ostracized in one area and fitting in in another, and just not having that overlap. Housing is just– some people can’t even find housing because of their criminal histories. And of course any employment is doubly hard, is really hard. Just checking that “do you have a felony” or “have you been in jail” box– a lot of times employers won’t even take the time to find out. They don’t even understand the law surrounding checking that box and don’t want to take the time to figure out how to work around that. There are ways. Just because you have a criminal history doesn’t mean they can’t employ you. So, Thank you. I want to thank you for your work.
Will Hall: Thank you so much. I would like to see an amnesty– because so many of those felonies are drug-related– I’d like to see an amnesty for anyone who has ever gotten a felony for a drug conviction. I’d just like to see an amnesty for all of them. People need to re-enter society. This is just terrible.
Audience Member#3: Hi. I grew up in the mental health system, I went to specialized schools and contained classrooms, and I also was in the juvenile justice system. But the mental health system is seclusion. I was not allowed to make friends my whole childhood because the schools I went to were also treatment centers. I was not allowed to engage with anyone because of the liabilities. And it’s all trauma, you know? Being separated from your family and friends, not being able to develop, and not having a chance to fail. We as humans grow through failure.
Will Hall: Mm hm. Yes. [applause]
Audience Member #3: And this system does not allow that chance to fail.
Will Hall: Right on.
Audience Member #3: No matter how old you are, it permanently stunts us and it doesn’t allow us to become the independent adults we need to. There is a lot that we can do but it’s not just one system, it’s all the systems doing the same thing to all of us. [applause]
Will Hall: Thank you. Thank you so much. We only have a couple of minutes, I want to try to take one or two more questions. I also want to say that someone handed me a note, and it has a poem that I think is very apt. It’s a poem and it says. “What else should I say? Everyone is astray.” [Audience laughter and applause]
Audience Member #4: Just real quickly, my name is Shirley Posey, I’m from Oakland, California. And I just want to say congratulations for embracing the whole issue of– for having the movement speak on the severity of the effects of the criminal system. I self medicated– being dual diagnosed– and ended up having to take a “deal,” as they called it in Oakland. Thirteen years later it’s still following me because I had to pay back every dime that they–
Will Hall: Like a plea bargain?
Audience Member #4: Yeah, like a plea bargain.
Will Hall: Yeah, that’s so common.
Audience Member #4: I had to pay back fines, you know, but the self-medication came from me being bipolar and I was a afraid of the medication so I just used marijuana and crack. But I came out of that. What I’m concerned about now, being almost 70 years old, is to see how my community has, for generations now, been systematically killed and used as fodder for people to be, you know, receiving money. It’s like four generations now, and down to 20 years old they are going in and out of the prison system like a revolving door. And they’re coming out in Oakland as killers. And they’re killing each other. Of course they’re coming out and their mental health is totally messed up. And there’s a reason for it. Because in prison they are being co-opted and I’m very happy that you’re stepping out of your comfort zone to address this. Because people don’t want to talk about it. And in Oakland it has ruined four generations in our community.
Will Hall: Thank you so much. Thank you so much. [applause] Folks, I’m very sorry but we’re out of time. We’re going to take one more question. A very short question or comment.
Audience Member #5: Mine’s a question–
Will Hall: Ok. I’ll be short, too.
Audience Member #6: –preceded by a comment. My husband was first a psychologist in the Wyoming prison system. He went on to become the warden in Montana, lost his job there because he was “too kind” to the prisoners in an era that was becoming increasingly harsh. My question is this, and it’s one I’ve pondered a long time: [unintelligible] became a therapist, we moved to Arizona. We worked with people on a new system of care for kids. He had a license challenge for “befriending clients.” We were told that you cannot be “friends,” that you’re blurring the line when you are friends with a client. So my question is, how do we begin to address this? Because it’s not psychiatry, it’s the counselors that are the most ill-trained and frequently the ones who have the most impact on families. What do we do?
Will Hall: Yeah. That is a really great point. We need to start treating people like people rather than using confidentiality rules and the protections in a very excessive way that just ends up undermining connections and relationships and peer support. I think that there are, hopefully, ways that we can overcome that kind of thing. It becomes so restricting, controlling and limiting people. But you said it very very well and I hope you can speak about that issue and help educate around that because it is very important.
Folks, this is so important. I would love to be able to talk more and hear more of what people have to say. But we have to wrap it up. So thank you so much for the opportunity this morning. Thank you.
[applause and cheers]