A New Mental Health System? Interview with Jim van Os

Will Hall, MA, DiplPW
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With one of the highest mental health spending rates in Europe, the Netherlands is undergoing a dramatic rethinking of how to provide mental healthcare, a rethinking now gaining momentum throughout the region. In a recent interview with Dr. van Os on Madness Radio — one of the most prestigious scientists in the world, in the top 1% of most-cited researchers, and a member of the Royal Dutch Academy of Sciences — I got a glimpse of what is starting to emerge. Changes in The Netherlands have potential to influence mental healthcare worldwide.

Meaningful change can’t just “improve the standard of care.” It must recognize that the entire standard is based on faulty measurements. First, there needs to be a a new definition of health. Van Os points to how the antiquated definition of health as “absence of symptoms of disease” leads to massive overtreatment and disregard for meaningful outcomes in individual lives — Not just in mental health, but across healthcare. He points to Huber and colleagues, writing in the British Medical Journal, who describe a new consensus emerging to define health as the “ability to adapt and self manage in the face of social, physical, and emotional challenges.” (In our popular education work on medication at the Freedom Center and The Icarus Project, we came up with a similar definition in the context of “harm reduction” for mental health: health as the capacity to be empowered.)

Under the current standard of care we can, for example, demonstrate the very poor relief from psychotic symptoms realized through anti-psychotic medication use, and show how more selective use of medications — and avoidance of long term use — results in better treatment outcomes. But when we rethink the concept of “health” itself, and move beyond measuring the absence of disease symptoms, we start to address something far deeper and more meaningful. We get at what the Hearing Voices Movement and mental diversity mutual support groups, led by patients around the world, have been pointing to: we can live with so-called symptoms and define recovery in human terms that embrace individual differences, and foreground the agency and empowerment of the person involved. A new definition of health builds a bridge across the “disease model” that has resulted in a separation of the movement from medical practice.

In this context, van Os points to the failure of the medical model approach to psychosis, including schizophrenia, resulting from the archaic Kraepelin asylum system of categorical disease diagnosis. Kraepelin’s 19th century diagnostic system emerged from the needs of population control in asylum management, not meaningful medical investigation. Instead, if we rethink illness, we can then more honestly describe “psychosis” as a spectrum of experience, not an either-or marker of the presence of some presumed but never-proven disease process. (Van os and colleagues have been leading efforts to abolish the “schizophrenia” label on these grounds.)

This approach allows medicine to address a core paradox of the disease model of psychosis, a paradox demonstrated by van Os’s research and countless studies from Europe, the US, and cross culturally: every “psychotic” experience — from hearing voices to paranoia to disorganized speech to strange ideas to manic bursts of inspiration to silent inward collapse — also appears in the “normal” population to some degree or another, without necessitating either distress or medical treatment. “Psychosis” is a human variation, not a disease. The “illness” is — again going back to the redefinition of health — the lack of capacity for adaptation and self-management in the face of challenges.

That psychosis is human variation is easily demonstrated: take anyone and deprive them of sleep for long enough, and they will start to experience psychosis. Some of them will value what happens and find meaning in their visions and voices; others won’t. What people need help with is empowerment, adaptation, and management of challenges – often wrapped up in so-called psychotic experiences, but not intrinsic to them. Every “psychotic” crisis is wrapped up in life challenges and problems, especially family conflict and abuse, which has also been pointed out by the work done by van Os and others around the etiology of psychosis.

The psychiatric survivor and “mad” movement today is a continuation of a revolution launched by the women’s movement and gay rights movement, and we do well to remember the history of homosexuality as a psychiatric disease. Psychiatrists looked at homosexuality in society, and saw higher rates of suicide, addiction, anxiety, depression, and other problems among people with same-sex attraction. They mistakenly concluded – predictably – that homosexuality is a disease. But same-sex romantic and sexual attraction itself was not responsible for these problems: homophobia was. It is the response to diversity, not the diversity itself — including the internalized response, as those of us who are not heterosexual know about the poison of internalized homophobia — that is the issue.

Everything we call “psychosis” is likewise just human diversity: no psychotic trait is intrinsically disordered or associated with suffering itself, until the issues of adaptation, self-management, and empowerment come into the picture. In fact, as we at The Icarus Project have been talking about for many years, much of what gets called “mad” might also be a creative and positive contribution looking for a world that welcomes it. Hearing voices, considering suicide, perceiving plots around you, perceiving subjection to mind control, believing in demons, falling silent, breaking with “productive” behaviors, visions, racing thoughts, intense sadness – it’s all quite normal to someone somewhere. What makes it suffering is context and response: the self-management, adaptation, isolation, and empowerment the person experiences.

Especially refreshing to me was learning van Os’s clear understanding of the so-called “evidence-based” approach to medicine. Not only do we need to redefine health, we also need to recognize that just because some treatment is shown to be better than placebo in clinical trials means nothing to an individual’s experience. Relationships of caring and healing are consistently shown to be what helps people, whether they include placebo or the latest treatment fad. Grouping people in aggregates of treatment response in clinical trials markets products and advances careers, but it denies the variability of individuals. And in medicine it is always individuals, not group aggregates, that receive treatment.

When I met van Os at the Crazywise conference in Holland he presented something unlike any other psychiatrist I have come across: a clear vision, and a pathway, for dismantling the existing mental health system and replacing it with something new that actually works. And he is doing it with all the status and prestige of not only a psychiatry insider, but of one of the world’s leading scientists. Along with changes in the definitions of health and psychosis, and the role of “evidence-based practice,” van Os described pilot programs now underway in The Netherlands to downsize large bureaucratic medical delivery and establish small, human-scale services — inspired by Open Dialogue — that respond by engaging the social network of people in distress. And, inspired by the best of the US “peer” movement, by involving people who have themselves recovered from madness in a treatment role.

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New Vision for Psychiatry | Jim van Os | Madness Radio

JimvanOs

What if psychiatry recognized that schizophrenia does not exist? How might diagnostic categories (left over from the asylum era) be replaced by spectrums of experience? What if services were oriented around individuals, not the statistical groups of “evidence based” research? And could a new definition of health as empowerment, not the absence of disease symptoms, replace the mental health system as we know it?

Jim van Os, professor of Psychiatric Epidemiology at Maastricht University and member of the Royal Dutch Academy of Science with more than 700 publications, is in the top 1% of cited scientists in the world. His research combines with the experiential knowledge of people with lived experience of psychosis to envision a radically new direction for the mental health system.

http://www.madnessradio.net/files/SchizophreniaDoesNotExist-vanOs-BMJ.pdf http://www.madnessradio.net/files/HuberHowShouldWeDefineHealthbmjd4163.pdf
http://www.brown.uk.com/schizophrenia/rossler.pdf
http://www.huffingtonpost.com/entry/schizophrenia-reclassification_us_56b20834e4b01d80b2449334
http://bit.ly/1IYsEez
WWW.PSYCHOSENET.NL
TEDx “Connecting To Madness”

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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48 COMMENTS

  2. I’m all for neutralizing distress and treating it as a spiritual and emotional condition rather than as one of biological origin. And I can’t speak for other countries, but I do know that here in the United States, the system is rife with bully-victim dynamics which I feel is what is most avoided, and which is core to distress, fear, despondence, and rage building on a daily basis, leading to breakdowns in health and social functioning.

    The system bullies when it needs to, for control, and when you stand up to it, they 1) turn into meaner bullies and they bring in their minions, so it is an impenetrable bullying system, and then 2) they become “victims”–all practically at the same time. This is what I have found to be most pervasive, draining, and re-traumatizing for clients.

    Until this is resolved, I don’t see how anything will truly and authentically change of significance, because these relationship dynamics can permeate any modality and is actually the CAUSE of core, daily distress. I think that’s the loop here.

    I can’t predict the future, but it seems reasonable to me that this will be resolved when enough survivors stand up to the insidious bullying that permeates the mental health world, and then get the hell out of there. It can be a rough road at first, but it is courageous, clarifying, strength and power building, freeing, and thoroughly healing.

    • this will be resolved when enough survivors stand up to the insidious bullying that permeates the mental health world, and then get the hell out of there.

      Yes, but herein is the ‘rub” — “getting the hell out of there” is not a matter of choice or self-growth when you are only there in the first place because of coercion. Hence the need for a political action movement.

      • You mean *perceived*, as in….”Hence the (*PERCEIVED*) need for a political action movement.” You know, “oldhead”, that a “political action movement” is the Saul Alinsky death-knell to true reform in the pseudoscience drug racket of psychiatry. Or are you saying that had they not organized a “political action movement”, then perhaps millions MORE would have perished in the Nazi death camps. Yes, *THAT* “political action movement” meant that only ~6million were killed. What a great political action movement leader you are, “oldhead”!….

    • While I think we do create a atmosphere of bullying in this country, I think mental illness is more a scapegoat… Particularly for Western politial psychology or propaganda. You need a group that can’t defend itself, that is disliked or distrusted by the majority, and your want to keep them that way. If they become liked or accepted, someone will want to protect them. The mentally ill, LGBT, for years people of color have been used this way.

      • Oldhead and Acidpop, great points, thank you.

        From both your posts, the words that stand out to me are ‘coercion’ and ‘scapegoating.’ I believe these are the relevant universal social ills completely related to the social stigma which I, personally, feel is highly relevant—scapegoating creates it and coercion is the result of it. Social bullying can be subtle and insidious because it is based on our way of life these days, it is the norm. This creates a society of utter madness a need to awaken, hard to see it any other way.

        Oldhead, I know how you feel about this concept of ‘stigma,’ but I stand by it as the culprit at the root of the injustices and social bullying perpetrated upon, at least, those who wind up diagnosed in the system and on disability. That is the marginalized population on which I focus, as far as the most flagrant victims of second class citizenship and the grave social injustice which accompanies this.

        This population is perceived through extremely negative fear-based filters (stigma) that affect every aspect of their lives. That is a 24/7 enormously stressful existence, filled with double binds and feelings of utter powerlessness. That creates internalized madness.

        Of course there is a lot of acting out in this community, but good lord, is it any wonder? That is not in the slightest a comfortable life, and the days of true social advocacy are either dwindling or entirely over, I think, it is war everywhere you turn, even among advocates. Everyone is clinging desperately to their power now, as threatened as it is by all that is coming to light now.

        “Yes, but herein is the ‘rub” — “getting the hell out of there” is not a matter of choice or self-growth when you are only there in the first place because of coercion. Hence the need for a political action movement.”

        I’ve nothing against a political action movement to represent and advocate for the rights of any citizen to be honored and respected. However, that is a complex process, lots of resistance and fighting, also splitting within the movement, then failed and frustrating attempts to reason with the oppressors. It’s a courageous endeavor and I believe people feel their power in that process, until they don’t.
        It’s an emotional roller coaster and those with the fortitude to ride it, more power to them, and support any endeavors to bring clarity and justice.

        I did the politics in San Francisco as long as I needed to for my own freedom via dissociation from this, and in the process created a bit of change via testimonial at city hall and legal action thanks to pro bono legal support through a non-profit.
        I wanted to do more and got myself way in the system with my film, and was suddenly curtailed from that path when they figured out that I was pretty much anti-system, proposing new and more progressive ways to heal. But I got far enough to have made it all worthwhile.

        I was on my own, however, in my battles, and I think that made it easier for me, because I was not having to defend my reasons for choosing the path I chose, I simply spoke the truth of my lived experience and I was heard. But not without tremendous effort and continually repeating what I’d experienced in the system.

        Finally I decided that, for the sake of my own well-being, it was best that I shifted my focus in all of this, which is why I’m doing healing work with others through music and the arts now. Politics makes me sick, literally, and I’m totally ok with that, and base my life choices on my preferences.

        So, overall, I think it’s wise for people to balance what they feel inspired to do and what is healthy and sound for them. That is entirely an individual’s choice of self-care while creating change. It is different for each of us. Those who are ‘imprisoned’ are challenged to discover their own power within themselves, because they are demeaned and made to feel utterly powerless. That is, indeed, a conundrum to which I have no answer at this time. Although I think about it often, how to get past the gatekeepers of injustice.

        “While I think we do create a atmosphere of bullying in this country, I think mental illness is more a scapegoat… Particularly for Western politial psychology or propaganda. You need a group that can’t defend itself, that is disliked or distrusted by the majority, and your want to keep them that way. If they become liked or accepted, someone will want to protect them. The mentally ill, LGBT, for years people of color have been used this way.”

        I agree, this is an issue of scapegoating. But that’s what makes one an easy target for social bullying, everyone kind of joins in, as a society. Lots of issues in that, alone, to be addressed—how we jump on scapegoating bandwagons, for political reasons, or simply because we’re angry and need a scapegoat. Sadly, that is supported and practiced at large in our society.

        I’ve been an active LGBT activist for a long time. My most powerful action was getting married to my partner, now 30 years together. Before we were married legally, we got married at SF City Hall as an act of civil disobedience, along with thousands of others, before it was legal, under Gavon Newsome’s general act of civil disobedience of opening those doors.

        I did a lot of work with Equality California (EQUA), too. It was cohesive, which made a difference, the focus was on marriage and the right to love and create a life together with whomever we wish. Unlike Act Up, which was always in disarray because they were angry and their protests were violent. But that’s a good example of divergent communities after the same goal. Each group chose their beliefs and process, but the goal was the same, equal rights.

        By the same token, I feel my most powerful act of activism as a psychiatric survivor was ditching their ways, flipping them off, and healing my way, naturally, and getting on with things. The lawsuit was good, and my film was effective, but healing away from all of this is what speaks the most, to my mind. I had been coerced at one time, but I managed to talk my way out of that eventually, most fortunately.

        I very much appreciate what you are both saying, I’m just not versed in political and social theory, so I’m learning about this as we go, here. But my personal experience speaks for me, so I let that guide me. Perhaps these are all parts of a giant whole, working in tandem on a macro level. I’d like to think so, in any event.

        • I’ve nothing against a political action movement to represent and advocate for the rights of any citizen to be honored and respected.

          It’s not an optional choice, it’s the only way.

          that is a complex process, lots of resistance and fighting, also splitting within the movement, then failed and frustrating attempts to reason with the oppressors.

          That’s why they call it “struggle.” Also, you don’t try to reason with oppressors, you try to defeat them.

          As for scapegoating, all should understand that this is a basic and necessary component of fascism. Psychiatric survivors, immigrants and Muslims are currently at the top of the list but there are others.

          Oldhead, I know how you feel about this concept of ‘stigma,’ but I stand by it as the culprit at the root of the injustices and social bullying perpetrated upon, at least, those who wind up diagnosed in the system and on disability.

          Actually I’m not sure of my complete take on the concept of “stigma” but I do disagree with that; I would say that more at the root of psychiatric oppression are a) as mentioned before, the need for scapegoats and b) the need to dismiss dissatisfaction with the system as an individual problem rather than a societal problem.

          • Re stigma, I thought I had remembered you balking at this pretty firmly, so I’ll take back that I understand your position on it, since you are unsure about it, yourself.

            And yes, that is why I call scapegoating a universal social ill. Best we can do is not scapegoat others and set the example. Other than that, I’m not sure what will stop those in the habit of doing so, and like I say, it’s become so normal in society. I agree, it’s dangerously oppressive, which is why I call it out.

            I thought open dialogue was about being reasonable in discourse, although I don’t know anything about it, I just figured that would be a requirement for dialogue to be fruitful. Perhaps that is not meant to be directed toward oppressors, but to my mind, it would be, for the sake of healing in a family system.

            In any event, I was thinking about when I attempted to reason repeatedly with the management team at the voc rehab agency at which I was client-turned-staff, when I was sure they being blatantly discriminating. I went through protocol, as directed, and ended up getting fired in retaliation.

            In the end, I did defeat them. But that was incredibly taxing, and I would not go through that again. I’m awake now, and having learned from all this, I don’t get caught up in situations like this any longer.

          • I think stigma is a manufactured problem which is inherent in the structure of psychiatry and the mh system, and which disappears when one manages to divorce oneself from them. (Now even shrinks are complaining about being the victims of anti-psychiatry ‘stigma.”) Without a psychiatric label it’s harder for people to point fingers and whisper (or discriminate).

          • Dan White was not acquitted, he was convicted of manslaughter (as opposed to first degree murder, which would have been justified of course).

            https://en.wikipedia.org/wiki/Dan_White

            I just wanted to make that correction for the sake of historical accuracy, but I don’t feel it’s appropriate to go further into this discussion on this blog. Thanks for the interesting dialogue, oldhead, as always.

          • OK, details, right, voluntary manslaughter…anyway I brought it up not in relation to this thread because you mentioned having been involved in political activity in SF. The events following the Milk assassination, culminating with the rebellion, are credited with substantially bolstering gay political power in the city, so I was just wondering if you had any anecdotes or memories to share. But maybe that was before your time, no biggie…

          • Maybe on another blog where it would be on topic, if one were to be ever published, I’d be more willing to go into all of this. My comments regarding LGBT issues were in response to acidpop’s well-founded remarks. But I’m appreciating all that you’re saying here. It’s a complex and fascinating subject, how LGBT rights evolved. I am, indeed, well-versed in the subject from my personal experience being in the hub of that community for a long time.

          • Although I guess since this statement in the article, I will respond a bit, if it is helpful in any way:

            “The psychiatric survivor and ‘mad’ movement today is a continuation of a revolution launched by the women’s movement and gay rights movement…”

            Having been an integral part of the gay rights movement, I personally find it hard to relate to this. In fact, I don’t at all.

            My work and experience as a survivor activist has been radically different than my work as a gay activist. The issues and dynamics don’t really overlap on a basic level. One is based on oppression, discrimination, and marginalization in a system which is SUPPOSED to be about health issues, while the LGBT movement is based on lifestyle and life partner choices, based on desires of the heart.

            The political and economic power gained was the result of the AIDS crisis, when LGBT discovered they had NO power in Washington, and that’s when the community began to come together in support of each other, quite lovingly. This is what created the foundation of the community we know today, which is powerful now.

            So while health and political issues relate to both, they are in completely different contexts, since the mental health system is cross-cultural. It is not gender or sexuality or race or ethnicity that is the common bond, it is some kind of dissonance or imbalance or a crisis, which can happen to anyone.

            I don’t know about the women’s movement, and while I’ve always advocated for equal rights for all, I’ve never identified as a ‘feminist,’ nor would I strive to. This movement does not speak to me, but the survivor movement does. I believe this is our opportunity to once and for all set a different example, for which I’m still waiting.

            I lived, worked, volunteered, and hung out in Castro for almost 20 years. I threw a fundraiser for equality in marriage before it had become such a public debate. I was on the steps of City Hall with thousands of LGBT community members celebrating the doors opening.

            The riot following the White verdict was not a shining hour for that community. Rage was understandable, but to channel it in such acts of destruction does not lead to any kind of true and authentic power, only the power of mad rage, which is hardly change from the old. It’s just more on the surface when triggered by blatant acts of disregard.

            It was the sudden loss of lives due to a devastating illness that led to what we know today as the very powerful and highly respected LGBT community. First, however, there was a lot of grief and humility to own and experience. Then, things started to happen.

          • Ok I see what you mean, this could be both a can of worms & a slippery slope. But since I’m already starting to slide I can’t help mentioning 2 things, & I won’t press you to respond as I don’t want to divert the thread: One, I’m surprised to hear you refer to being gay as a lifestyle “choice” — isn’t that Falwell’s term?

            Also, while I’m just cutting/pasting here, I did come across this statement in Wikipedia which seems to contradict what you said on one count:

            In the following days, gay leaders refused to apologize for the events of that night. This led to increased political power in the gay community, which culminated in the election of Mayor Dianne Feinstein to a full term, the following November. In response to a campaign promise, Feinstein appointed a pro-gay Chief of Police, which increased recruitment of gay people in the police force and eased tensions.

            Anyway that’s what it says here. I was on the East Coast at the time, but I remember the reverberations were very strong. A subject for another time, I agree.

          • Oh, good grief, you are relentless. I’m never going to fight or argue about this, that serves no purpose to me. I have my opinion, perspective, and experience. My partner and I are integral to this community.

            In response to what you post here, I am totally aware of the cause-and-effect chain that involved Feinstein, etc., and also of the various interpretations of this history. Like I said, I’ve been an integral part of gay rights history, and I continue to be, through my life and film work.

            There are diverse voices and diverse opinions on the matter, such as there is with anything.

  4. A very hopeful article. Yet what are the parameters around the definition of “functioning” and the stops to be placed on blaming the victim if they still experience distress even after they are “accepted”?

    And more importantly, how are medical conditions such as a thyroid storm or adrenal issues going to be ruled out? Medicine does a pretty poor job of that now and the move to acceptance doesn’t seem to point in the direction of making that any better.

    • I was thinking the same thing. There are quite a number of physical ailments that can readily induce “mental” symptoms which can’t be controlled without treating the underlying physical condition. The most hallucinatory individual I ever met one of these- had multiple personalities with different capabilities, used to be “transported” to a Willowbrook Maine or somewhere where this perpetual funeral was taking place (seconds to respond, pull over and shut the car off if she were driving). She suffered from an easily treated thyroid imbalance discovered by a blind psychologist with a GP referral.

  5. Looks like I’m somewhat stuck with the Simon Cowell role here.

    Weren’t we just talking about the danger of positive trends being snatched up by psychiatry as a way of preserving its fiefdom — when the value of such developments is precisely their independence from psychiatry and medicine? What some seem to consider “hopeful” to others might seem more like cooptation. (This is not a commentary on the author’s sincerity or goodwill.) Anyone agree, or didn’t I read closely enough?)

    The psychiatric survivor and “mad” movement today is a continuation of a revolution launched by the women’s movement and gay rights movement, and we do well to remember the history of homosexuality as a psychiatric disease.

    Not to mention drapetomania.

    I wouldn’t say the mental patients liberation/anti-psychiatry movement grew out of the WLM or gay rights movements, we were all going pretty strong simultaneously for awhile, with many feminist & gay activists involved in psychiatric inmates’ liberation and vice versa. What needs to be studied and learned from is how this all fell apart and got sold out.

    • A continuation? First came the civil rights movement, everything else, including the movement for the liberation of mental patients, is an extension of that movement for civil rights. We are still denied the civil rights that are taken for granted elsewhere. Second or third class citizenship for people who have experienced the mental health system is injustice. Duh.

      They did not launch our movement, we launched our movement, but our movement came on the coattails of the civil rights movement. Same as theirs.

      I have much trepidation about this idea of a new and improved mental health system seeing as the old one was based entirely upon brute force. Flowers for your concentration camp is not the same thing as release from that concentration camp.

      Also, I would like to mention that I think the anti-psychiatry movement entirely compatible with the psychiatric survivor and the mad movement. It is just not very compatible with this new and improved tortures model.

      Of course, this compatibility flies in the face of the psychiatrist’s grand scheme to save/cure all the “sick” people who don’t actually have a “sickness” regardless of whether they want such a cure/salvation or not. I mean the whole problem stems from the fact that “treatment” means labeling, drugging, and confinement. You get rid of the first two, there is still the third, and even if you get rid of that, the problem is you started there.

      Mad folk were confined before they were given “mental illness” labels. If they are treated now, it’s somewhat like an afterthought. When people don’t receive treatment (i.e. brainwashing), an attorney has the issue with which to get them released, and that defense is the “lack of ‘medical’ treatment” defense, seen as a form of ‘neglect’. The thing that always ‘distressed’ me in the mental health system was getting locked up against my will and wishes, in contrast to the American idea of freedom, and then having absolutely nothing I could do about it. I had a waste of time to contend with, and that waste of precious time was never pleasant.

      • I think the anti-psychiatry movement entirely compatible with the psychiatric survivor and the mad movement.

        I never figured out what the “mad movement” is supposed to be, but it strikes me more as an attitude than a traditional movement, i.e. a celebration of the spiritual/creative aspects of “madness.”

        Anti-psychiatry and the psychiatric survivor/inmate movement should not only be compatible but inseparable. What would the purpose of a “survivors” movement be if not to move away from psychiatry? While there probably are groups of formerly psychiatrized folks who reject the anti-psychiatry label but consider themselves part of a “movement,” it’s our job to raise their consciousness and “recruit” them.

        • https://en.wikipedia.org/wiki/Mad_Pride

          I don’t know that that entirely explains the mad movement, but it does give something of an overview, and while harking back to black and, especially, gay pride, this mad movement that arose in the 1990s, and in many ways, it parallels the psychiatric survivor movement that arose in the 1970s. Mad pride also represents a celebration of the failure of psychiatry to suppress madness.

          It is my feeling that if the two movements (anti-psychiatry & psychiatric survivor) were actually inseparable, they’d have the same name. I think there is much ground here for differences of opinion, and I hardly think that one automatically means the other, and vice versa. In fact, I imagine there are people who identify as psychiatric survivors who have nothing but antipathy for anti-psychiatry. Although I am not one of those, I think you have to sensitive to differences in perspective. Yes, our movement has over time been co-opted. No, we don’t have to be co-opted ourselves.

          That said, I agree with you about consciousness raising and recruitment. I think folks also have to acknowledge some of the changes that have taken place in recent years. The “mental disability” and “peer support” fields are giving rise to careerists, and careerism in the patient/ex-patient/paraprofessional domain would make the field give us an even more challenging fight than we had years ago. Not only is “mental illness” a business, but it’s career. We have a battle coming with this new careerism that obviously is helping to escalate the numbers of people calling themselves “consumers/users”, in other words, mental patients. We’re talking psychiatric system expansion here, and big time. This represents a reason to return to the theme of mental patients’ liberation. I’ve got a great deal of trepidation about this new role of mental health treatment as the gateway to a mental health treatment career.

          • Yeah, this whole “peer” thing needs to be examined very carefully and in my opinion dismantled asap. Those already caught up in it shouldn’t have their de facto support systems ripped out from under them but the essence of “peer” support is support for the psychiatric perspective, albeit maybe a slightly “kinder and gentler” version.

          • This is a response to Oldhead and his comment about peer workers.

            Originally, peer workers operated in alternative settings, not in traditional institutions commonly referred to as “hospitals. It’s almost impossible to remain true to the pillars of peer work in such places.

            Then, someone got the bright idea to get Medicare involved in all this and make peer work billable to Medicare and then we saw the influx of peer workers everywhere. I believe this is where peer work was co-opted in a big way. You can’t remain true to the principles of peer work, in my humble opinion, and bill Medicare for your work in 15 minute increments. Writing notes in people’s charts goes against most such principles, at least the school of peer work that follows Intentional Peer Support. So, once again the system has managed to co-opt what started out as a good thing.

            I myself am one of two peer workers in a state hospital. Many would say that we’ve gone over to the Dark Side as we struggle to change a system that is so monolithic that I don’t think we will ever get it to change. It’s disheartening work watching people be coerced into destroying themselves by complying with the drugs and ect. In it’s pure form peer work is valuable but once you let the system get its hands in things it’s all up for grabs.

        • It is my feeling that if the two movements (anti-psychiatry & psychiatric survivor) were actually inseparable, they’d have the same name… I imagine there are people who identify as psychiatric survivors who have nothing but antipathy for anti-psychiatry.

          Right. The way I see it is that “anti-psychiatry movement” encompasses everyone who opposes psychiatry. My political position is that the anti-psychiatry movement should be led by ex-“patients”/survivors; also that a psychiatric survivors “movement” should be anti-psychiatry by definition, and that if a group which is not anti-psychiatry should portray themselves as the “survivors movement” we should confront them (as politely as possible) for creating confusion and demand that they clarify their goals (and name). I’m not saying they have no right to do whatever they might do, it just shouldn’t be presented in a deceptive way as though it represents survivors.

          In short:

          — The “anti-psychiatry movement” would include all who oppose psychiatry, including but not limited to anti-psychiatry survivors;

          — Psychiatric survivors who are not anti-psychiatry could form or join any organization they choose, but would not be eligible for membership in whatever anti-psychiatry organization might be formed.

          — (This would need to be worked out) Anti-psychiatry survivors who feel a need to work primarily with other survivors could either a) form a separate organization working side by side with the general-membership anti-psych org or b) form a “survivors’ caucus” within the larger anti-psych org. (My personal preference would be the latter I think, as long as mechanisms weare built into the decision-making process to guarantee survivor control.)

          None of this is written in stone for me but I think it’s a workable framework.

          • Really, OldHead. You form the organization first, and then you worry about membership qualifications. Given a core group behind the organization, shouldn’t be a problem. Pro-psychiatry people would not be welcome in any organization claiming to be anti-psychiatry, of course, unless the organization was just a cover for something else. I don’t think they tend to gravitate in that direction either, not unless, as the case may be, they want to be disruptive. Always a possibility, but with a core group, easily monitored, and kept under control.

            I think we have to differentiate organization from movement, but with an organization you’re much closer to having a movement, movements being made up of organizations, and each feeding the other. Anyway, yeah, that would be the idea. As to the work, well, you know how it goes, or maybe you don’t. We can talk about this until we’re blue in the face, but somebody has to manage to do the lion’s share.

          • As to the work, well, you know how it goes, or maybe you don’t. We can talk about this until we’re blue in the face, but somebody has to manage to do the lion’s share.

            That’s not a movement, that’s a hobby, clique or personal project. Talking about division of labor is largely premature without people to share a common and clearly articulated vision and analysis, followed by collectively determined projects and actions. But realizing that you have an undemocratic structure after you’ve started embarking on actions is a little late, especially when it can be foreseen. Though there are probably better places to carry on these sorts of discussions for those who are really interested in doing so.

            [This doesn’t mean that people shouldn’t work in more loosely-defined coalitions (such as stopping Murphy) in the interim; my concerns here are specifically in relation to developing an anti-psychiatry movement.]

          • Usually it boils down to personal initiative.

            I think there are limits to discussion that you don’t find so much in action. I’d like to see a little more action, and a little less discussion.

            Let’s see, what does dictionary say? I Google activist, and the Vocabulary.com definition comes up on top.

            An activist is a person who campaigns for some kind of social change. When you participate in a march protesting the closing of a neighborhood library, you’re an activist.

            https://www.vocabulary.com/dictionary/activist

            Of course, we can always redefine activist to mean procrastinator.

          • Frank, I don’t know why you always rely on system definitions. Try finding racism in Webster’s; it’s pretty much defined as prejudice.

            Of course, we can always redefine activist to mean procrastinator.

            So, specifically who is procrastinating, and what are they procrastinating at doing? I don’t remember any actions being debated or anyone volunteering to do them. Is there a main procrastinator we can all vent about and blame things on, or are you calling out everyone?

          • Generally speaking words are used to communicate with, and when we aren’t communicating, we don’t need words. At this point, my silence can speak for me. I don’t see any benefit in dragging the discussion out when the discussion isn’t proving productive (i.e. going anywhere). I think it best I pass on this one. I’ve got other concerns. As I was saying, some of us value action over talk.

        • Who HIRED you, or self-appointed you, to do the “job” of “raising my consciousness”, and “”recruiting”” me? I survived psychiatry, and psychiatric drugs, and a couple of State mental hospitals, and a couple of local “community mental health centers”. I even survived being beaten almost to DEATH by jail guards. Are all those “movements” “compatible but inseparable”? Like I said, *WHO* said it’s your job? Please stop trying to speak/act/work/agitate/advocate/etc., for me. It’s insulting and condescending, and patronizing. Stop gaslighting me, “oldhead”.

  6. I don’t even try to reflect on the multiple dimensions of how the emotional and the ental worlds of people constantly interact with what is happening to a person in the realities she inhabits – from this start the ground is perhaps a bit more shaky when it comes to the many experiences of ambiguous and conflicting nature – which can lead the complex mental and emotional worlds of folks to expand and crack upen into spheres that can be utterly overwhelming.
    It makes me cry out in pain and anger to read that the newest neoliberal response is to call for more ADAPTATION to and SELF MANAGEMENT … for folks trapped in the interferences and consequences of being a subordinate to enactments of socio-cultural, socio-political oppressions to less subtle abuses, disguised as glorious powers or mean rights of superiors, folks who often struggle for years until all of their survival adaptations break away … and the last hope for being good, self manage and ameliorate one’s strengths to make it to a better place… break under the despair of dark insight or failing escape …
    The more I read of such kinda stuff, that smells of functional sadism, the more I wonder why survivors fall for discourses that are treacherous and in denial of the darker moral and economic traps that, be it in disguise of the normality of patriarchy, racism, winners and loosers, create the weirdest entanglements of minds and emotions… with more or less visible crises.
    Adaptation & self management do little but add another layer of burden on those subordinate to conflicts of injustice that can reach points of becoming unbearable.
    As long as scientistic experts ride happy on their spectrum models … and use vocabulary that excuses and hides socio-political injustices, abuses, oppression … but now demands to be empowered to adapt the marketing versions of the normative injustice scenarios … so the silenced years of struggles, alienations, efforts to adapt to falseness of the folks whose minds find no more trustful ways to cope and overcome … can be silenced now on spectrums of a flat model world… and with the darkness in normality of abuse and oppression, gaslighting and bullying hidden … everyone who crashed must now forget their despair and dissent, and yet by into the new set of lies and false promises… of health as self management in the face of breakdown from years of manipulation and more or less subtle abuses and betrayals…
    Never mind if this reads crazy… the interminglings of so many disguises and lies, the complexity of betrayals and struggles to become the person that is better, reaches better goals before crashing again … now ridiculed and hidden away from orperationalised spectrums of cognitive emotional states … leaving the health industries new emperors to sell get-on with ‘symptoms’ and become versatile to no longer seeing the janus faces of betrayal and abuse, the superiors gained right to special treatments, we should have learned this, no more … here is to the flat spectrum world of win-win-deals for the keep-it-short-and-simple minded new self managers… no more calls for adaptation to unbearable betrayals and hopes to get out of there … as they just do not exist any longer in a win-win-world where everyone wins who self manages his days & strengths and is focused on growth and positive outcomes… it’s a beautiful flat spectrum world for all … and our epigenetics will certainly follow the positive resiliency build by the use of electronic psych-mates to self manage ‘psychotic symptoms’ as outlined in the spectrum video-animation…

  7. Thanks Will! I find this very hopeful and encouraging. Although some writers on this site are fighting psychiatry and hoping it will be eliminated, I don’t believe that will happen unless we have something to replace it with. I am glad to see that some psychiatrists are trying to improve the system. My thanks to you and your colleagues for the work that you do!

      • What DO you mean? A super-max is more humane that a deathcamp. Woo-hoo.
        Distributed genocide is still genocide. And genocide by PhRMa is only a slower form of genocide by Zyclon gas….
        Dr. Jim van Os wants to do away with the word/”diagnosis” of so-called “schizophrenia”. Is that not radical enough for you?
        Why is it that NONE of your comments here directly reference Dr. Jim van Os’s “New Vision for Psychiatry”?

    • First. Some of us are fighting for abolition of non-consensual coercive psychiatry. Second. If there is a replacement for non-consensual coercive psychiatry, it is consensual non-coercive psychiatry. Think, there is a difference between rape and making love, and that difference is made by consent. We’re talking in psychiatric terms about the same kind of thing. Third. Could psychiatry survive consent and non-coercion. Let’s go there, and find out. If it can’t, it needs to be eliminated. When your hospitals are prisons, and your patients are prisoners, you’ve not exactly got fair play in commerce.

      • I agree, there is a difference in making love and rape. Forced and coerced, with misinformation, treatment is rape. Which is almost all of psychiatric treatment today, since people are coresed into taking psychiatric drugs, based upon the fraudulent, and scientifically invalid, psychiatric theories of “chemical imbalances,” claimed via misinformation taugh via the DSM.

        I see no difference, however, between today’s psychiatric industry’s theology, and the Nazi’s psychiatric industry’s theology, other than one was based upon pretending all Jews were “mentally ill,” and one is pretending the now known adverse effects to the psychiatric drugs, are proof of “mental illnesses.”

  8. While there is merit in remaining hopeful that long overdue systemic change will occur there is also merit in remaining realistic. We have gone through numerous putatively transformative eras only to find that little changed. I’m reminded that it has been twenty three years since “Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s” was published. The biggest subsequent change was that providers and programs which once asserted evidence based treatment and the application of best practices now claimed that all treatment was predicated on Recovery. Subsequently all treatment was predicated on Recovery and Wellness.

    When will our mental health system be able to evidence no small portion of the endless change it claims? A system unaccountable to those it serves rarely serves them well nor does it allow for the systemic change it represents.

  10. Dear Will:

    My 26 year old daughter just got through a very stressful court hearing. The court does not want to grant her the option of living in the home with us, her parents, where she was conceived, delivered, and raised because my husband and I are basically pro-choice and we supported her past, failed attempts to come off neuroleptics in the past and we don’t embrace the medical ‘disease’ model of mental illness. She is going on her 12th six-month commitment (forced drugging) in six years and her fifth year of institutionalization, most of that in locked (secure) settings. Despite these circumstances she is doing remarkably well. She showed a lot of dignity today and a remarkable strength is developing in her character, even when she appears confused disorganized.

    I want to thank you and other activists and leaders for never giving up the fight. Since we started down this road with our daughter 7 years ago, we have seen signs that clinicians are slowly trying to understand the message that we have been saying all along, that conventional ‘treatment’ is harming our daughter.

    For people with dopamine superersensitivity who are very familiar with rebound psychosis and emerging tardive psychosis, TD, etc. it sometimes feels hopeless, but I can tell you fom experience that your work and the work of others like you is making a discernable difference as it concerns exposing our position to attorneys, judges, and clinicians. People are treating my daughter and us surrounding family with a little less discrimination and finally starting to show some grudging respect.

    Though we have a long hard road ahead with our daughter, I am cautiously optimistic feel that there is hope for healing and dialogue within the mental health system; maybe not the full scale revolution as called for by David Oaks but when one has fought as long and as hard as my daughter just a weekend pass can feel like a sea change. Please don’t give up on those who are locked up and forgotten.

    • Thank-you, “madmom”! It must be difficult to write about this experience with your daughter, even after going through it for years. The pain becomes chronic, and so does the healing, but that only makes the unbearable easier to bear. (By your use of ‘pro-choice”, above, am I correct in assuming that you mean as in “choice to be drugged, or not”?) There should be something like a “Mental Health (or “Patients”) Bill of Rights” in your State, that’s encoded in either State Law, or Regulation. Most likely, your daughter has had her Civil Rights violated many times. And, sadly, most likely any “Public Defender” is also complicit in this. You might look into filing a Habeas Corpus Petition with whatever Federal Court your State falls under.
      I wish I knew a more better set of suggestions. You might try also filing formal complaints with your State Medical Review Board, against various Doctors and Nurses, “Therapists”, etc. After 6 years, there’s not much chance that ALL her so-called “diagnoses”, and “medications” will make sense, if they are all looked at fairly. And, all the “meds” DO HAVE serious “extra-pyramidal” effects, which the psychs call “side effects”. These so-called “side effects” are in fact the very real PHYSICAL effects which the DRUGS cause. And THAT IS an area of legitimate Legal concern. Basically, I’m saying that neither the Judge, NOR the Court, are being honestly and fully informed as to what is happening to your daughters’ BODY, as the result of the PHYSICAL DRUGS. Whatever facility she’s in, is also probably not being honest. If you can show all this to the Court, then the “Preponderance of Evidence” will tip in YOUR favor! And your daughter’s, too! And, as you say, if she’s had a “weekend pass”, why can’t she just come home to live? To me, the facility wants to have it both ways. If she’s “well enough” for a weekend pass, then she’s not “sick enough” for forced hospitalization / incarceration. I’m on YOUR side here, “madmom”, and I hope my words here are helpful. Please get in touch, if there’s anything more I can do for you….~B./

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