Letter to the Mother of a “Schizophrenic:” We Must Do Better Than Forced Treatment and Laura’s Law

First Aired: 02-19-2015 -- 6 comments | Add comment

POCCsloganA few months ago I met your son. He said he would be waiting for us in the Berkeley park near where he sleeps outside at night, but at the last minute he called and was in San Francisco. He said he was at “the Mrs. Doubtfire house” with a photograph of his best friend, and that the photo showed numbers and codes predicting Robin Williams’ suicide. He found the house where Williams made one of his films, and was trying to talk to the owner. It was all part of a complex plan, marked mathematically in signs and omens he was collecting.

We drove across the Bay, worried. Were we too late? Would he be arrested and end up in the hospital again, this time for trespassing and harassment, a psychotic man caught bothering someone at a private residence?

When the GPS showed we were getting near the address he gave, I started to see people milling around, a commotion, cars stopped. My first thought was that something had happened. Maybe we weren’t in time, maybe he was already in trouble with the police, arrested at the house he seemed obsessed with?

At Steiner and Broadway we found your son, sitting on the sidewalk — but he wasn’t alone. He wasn’t the only one interested in the Mrs. Doubtfire house. The sidewalk was strewn with flowers, and dozens of other people were also there. What first seemed crazy, now seemed normal: many people, like your son, were drawn to the private residence where a Robin Williams film was made, to commemorate the actor’s suicide with a pilgrimage.

I walked up to your son and greeted him, unsure how this young disheveled man would respond to me. I had been told he was considered “severely mentally ill,” the worst of the worse, so beyond reach in his delusions that clinicians were considering using force to bring him to the hospital for treatment. But as soon as we made eye contact I was surprised. There was a clear feeling of affinity and communication. He explained in rapid speech about the numbers and messages on the photo, Robin Williams’ middle name, and the sidewalk code. It was all part, he said, of an alphanumeric psyche that communicates to him through signs and coincidences.

It was exhilarating and exhausting keeping up with the math calculations, anagrams, and nimble associations that flowed when he spoke. But he also at times talked normally, planned a walk up the street to a coffeehouse, explained what had happened about our meeting. I lost the thread at different points in our discussion, but one thing was clear: your son is brilliant. I was not surprised when he told us he got a perfect score on the SAT. “It was easy,” he explained when I asked. “Anyone can get a perfect score if they take the practice tests.”

We were quickly engrossed in conversation, and when he suddenly wove the author Kurt Vonnegut into the pattern, my eyes widened. Just moments before our meeting I was talking with my colleague, telling my own story of meeting Vonnegut. And now here your son was mentioning the author. I was amazed by the coincidence. As your son ’s talk became wilder and more complex, referencing the Earth Consciousness Coordinating Office, SEGA Dreamcast, and numerology, and as he did math equations instantly to prove his obscure points, I sensed an uncanny power and clairvoyance in the air. I was in the presence of someone in a different reality, but a reality with its own validity, its own strange truth. A different spiritual view.

Perhaps I am eager to emphasize your son’s talents because today he finds himself so fallen. I don’t romanticize the suffering that he, or anyone, endures. His unusual thoughts and behavior led to a diagnosis of schizophrenia, and seem to be part of deeper emotional distress he is struggling with. I don’t romanticize because I’ve been through psychosis and altered states myself. I’ve been diagnosed schizophrenic, many years and many life lessons ago, moving on with my life only after I found ways to embrace different realities and still live in this one.

So when we met your son I was completely surprised. The “severely mentally ill man” I was told needed to be forced into treatment was intelligent, creative, sensitive – and also making sense. Like someone distracted by something immensely important, he related to us in bits and pieces as he sat in conversation. Living on the street and pursuing an almost incomprehensible “calorie game” of coincidences on food wrappers isn’t much of a life, perhaps. And maybe it’s not really a choice – at least not a choice that most of us would make, concerned more with getting by than we are with art, spirit and creativity. What surprised me was the connection I had with your son. Because I took the time, and perhaps I also have the background and skill, I was quickly able to begin a friendship.

By taking interest in his wild visions, not dismissing them as delusional, and by telling him about my own mystical states, not acting like an expert to control him, we began to make a bond. I spoke with respect and interest in his world, rather than trying to convince him he “needs help.” What, after all, could be more insulting than telling someone their life’s creative and spiritual obsession is just the sign they need help? That it has no value? By setting aside the professional impulse to control and fix, I quickly discovered, standing on that cold sidewalk and then over hot tea in a cafe, that your son is able to have a conversation, can relate, communicate, even plan his day and discuss his options. Some topics were clearly pained, skipped over for something else, and he was often strangle distracted — but it was after all our first meeting, and I sensed some terrible and unspoken traumas present that were still not ready to be recognized. To me, clearly, he was not “unreachable.”

That we had a connection in just a short time made it very hard for me to understand why you or anyone would want to use force — to use violence — to get him into mental health treatment. A traumatic assault, instant mistrust, betrayal, restraint, then a complex web of threat, coercion, and numbing medications to impose compliance, possibly a revolving door of re-hospitalization, more medications, more threats and force and police… Surely creating a relationship, building trust, and interacting with compassion over time is a much better way to show concern and offer help?

When you think you know what is best for someone, it might seem faster to send a patrol car and force them off the streets and into a locked hospital cell. But would that really be safer? For who? Or would it push someone farther away, undermine the connection needed to find a real way out of crisis?

You’ve become an outspoken legislative advocate of empowering clinicians to intervene drastically in the life of your son and others like him. In pushing for so-called “Laura’s Law” the idea is to pressure, through force, compliance with medication and hospital care. Your son is today held up as a perfect example of why force is needed. I share your desire to help people in need; that’s why I went to meet your son in the first place. And I agree that our broken mental health system needs fixing, including by legislation and new services. I do want your son to get support. I want there to be more resources, more access to services, more connection, more caring, more healing. But I do not see your son, or people like him, as so “unreachable” that they cannot form a relationship with someone genuinely interested. That just wasn’t the man I met that day. I don’t see him as so less than human that his own voice and perspective should be ignored, rather than understood. I don’t see strange beliefs and outsider lifestyle on the street in any way justify the violence of forced treatment. I don’t see him as any different than any other human being, a human who would be terrible damaged by the violence of force, confinement, and assault, regardless of it being perpetrated in the name of “help.”

That day I met a man possessed by a mysterious artistic and spiritual quest that others around him can’t understand. He is homeless and perhaps very afraid deep down, but he is a person with feelings, vulnerabilities, emotions. Alongside the rapid fire associations that I couldn’t keep up with, he was also capable of connecting. His pilgrimage to Robin William’s Mrs. Doubtfire house wasn’t some lone obsessive symptom, the sign of schizophrenia and a broken brain, but understandable when put in context. His ranting was not a meaningless mutter but a creative and encyclopedic stream of enormous intellect. Yes he seemed to be in touch with some other reality, an altered state that demanded most of his attention. Yes I would love to see him living indoors, less afraid, more cared for and more caring for himself. I’d like to see many homeless people in the Bay Area have the same. But no, this is not a man I would want to force into restraints, injections, and confinement. I would not want anyone to be subjected to such violence — and it is violence, as people who have endured it will tell you. I would not want to destroy my emerging friendship with him with such an attack, because I know it is friendship — long, slow, developing connection and understanding — that can truly heal people who are tumbling in the abyss of madness.

Concerned and wanting to help, wouldn’t it be better for us to find the resources to gently befriend your son, to learn more about him, create trust, and meet him in his life and world? Even if this took patience, skill, and effort? Isn’t this how we want others to approach us if we seem, in their opinion, to be in need of help? Don’t we want our voice respected if we disagree with someone about what is best for us? How can friendship and trust possibly come out of violence?

Again and again I am told the ‘severely mentally ill’ are impaired and incapable, not quite human. I am told they are like dementia patients wandering in the snow, with no capacity and no cure, not to be listened to or related to. I am told they must be controlled by our interventions regardless of their own preferences, regardless of the trauma that forced treatment can inflict, regardless of the simple duty we have to regard others with caring, compassion, and respect, regardless of the guarantees of dignity we afford others in our constitution and legal system. I am told the “high utilizers” and “frequent flyers” burden services because they are different than the rest of us. I am told the human need for patience doesn’t apply to these somehow less-than-human people.

And when I finally do meet the people carrying that terrible, stigmatizing label of schizophrenia, what do I find? I find – a human being. A human who responds to the same listening and curiosity that I, or anyone, responds to. I find a human who is above all terrified, absolutely terrified, by some horrible trauma we may not see or understand. A human being who shows all the signs of flight and mistrust that go along with trauma. A person who may seem completely bizarre but who still responds to kindness and interest – and recoils, as we all would, from the rough handling and cold dismissal so often practiced by mental health professionals. Listening and curiosity might take skill and affinity, to be sure, when someone is in an alternate reality. But that just makes it our responsibility to provide that skill and affinity. Do we really want to add more force and more violence to a traumatized person’s life, just because we were not interested in finding a different way?

Your son may be frightened, may be in a different reality, may spend most of his time very far away from human connection. But his life, like everyone’s, makes sense when you take time to understand it. He deserves hope for change, and he deserves careful, skilled efforts to reach him and to connect – not the quick fix falsely promised by the use of force.

Even under the best of circumstances mothers and sons sometimes have a hard time communicating. Many young people refuse help – just because the hand that offers it is the hand of a parent they are in conflict with. Perhaps the need for independence is stronger than the need to find refuge in the arms of a parent. Perhaps children flee their parents in spite of themselves, because of some complex reality they are seeking to overcome. So maybe the help that is needed is not just for the sick individual but for repairing a broken relationship. I say this because after my own recovery from what was called ‘schizophrenia’ I became a counselor with families. I see again and again  — and the colleagues I work with also see again and again — that by rebuilding relationships, not tearing them down with force, healing can occur. A young person whose promising life and career were interrupted by psychosis can regain hope for that possible future.

A simple look at the research literature over the past 50 years shows that recovery from what is diagnosed schizophrenia is well documented and a real possibility – for everyone. Not a guarantee, but a possibility worth striving for. It is only in the past few decades that we forget this basic clinical truth about the prognosis of schizophrenia and psychosis, and instead predict chronic, long term illness for everyone. Such a prediction threatens to become a self-fulfilling prophecy, as we lower our expectations, give up hope, and relegate people to a lifetime of being controlled and warehoused in the identity of “severely mentally ill.”

I do believe help is need, help not just for your  son, but help for everyone in the family affected by the strange and overwhelming experience of psychosis. But when parents, who are alone and desperate to change their children, resort to pleas for force and coercion, they risk sacrificing the very connection and bond that can be the pathway towards getting better.

I hear the claim that Yes, we should respect the right to refuse help, but when people are suffering so greatly and everything else has been tried, we have no choice but to infringe on freedom. This is false. We haven’t already tried everything we can. We have not tried everything we can with your son, or with you. There is a huge wellspring of creative possibilities, skill, and resources possible if we just direct our mental health system to try harder and do better for you and your son  — and the many people like you. It takes money, vision, and political willpower, but people struggling with mental illness deserve the dignity of true help, not false promises.

We can, and must, do better. We must think outside of the false choice between coercive help or no help. We might start by asking people who have recovered from psychosis – and there are many –  what they needed to get better, and give them a leading role in shaping our mental health policies. We might start by respecting people’s decision to avoid treatment, and seek to understand the decision rather than overpower the person  making it. When you have been traumatized by those offering help, avoiding treatment might even be a sign of health, not madness.

Maybe some of us, when we are terrified, discover different realities to hide in. And maybe some of us, when we are terrified about people we love, reach for desperate measures – like forced treatment policies and Laura’s Law – to help. I believe that people who are afraid, perhaps such as your son  and yourself, need caring, kindness, patience and listening. Trying to force you, or him, to change may only drive us all farther apart.

I believe it is often the most brilliant, sensitive, artistic, and yes sometimes even visionary, telepathic, and prophetic people who get overwhelmed by madness. We need to discover who they are, and meet them as we would ourselves want to be met, rather giving up hope for human connection.

At the cafe where we talked, the waiter was polite, but kept his eye on your son, seeing only a dirty and homeless schizophrenic, not the human being I was getting to know, not the son you love dearly. When we said goodbye I tried to imagine what it would be like, living rough on the street, facing suspicion or worse from everyone I passed. I imagine it would be lonely, that I might fall asleep at night missing my childhood home, missing my mother.

Will Hall is a family counselor, consultant, and host of the FM program Madness Radio. He is also an advisor with the Bay Area Mandala Project.

Thanks to Dina Tyler of the Bay Area Mandala Project for her collaboration on this essay.

AB1421 (“Laura’s Law”) is a forced outpatient treatment scheme currently under consideration in Alameda County CA, despite lack of research showing any effectiveness and despite broad opposition from people who have themselves been patients in mental health care. If you would like to share your opposition of Laura’s Law, please call or email the Board of Supervisors in Alameda County:

Telephone Numbers

District 1: Supervisor Scott Haggerty: 

Scott.Haggerty@acgov.org

and josh.thurman@acgov.org

(510) 272-6691

District 2: Supervisor Richard Valle:

Richard.Valle@acgov.org

and ginny.demartini@acgov.org

(510) 272-6692

District 3: Supervisor Wilma Chan: 

Wilma.Chan@acgov.org

and Dave.Brown@acgov.org

(510) 272-6693

District 4: Supervisor Nate Miley: 

Kamika.Dunlap@acgov.org

and district4@acgov.org

(510) 272-6694

District 5: Supervisor Keith Carson: 

Keith.Carson@acgov.org

and amy.shrago@acgov.org

(510) 272-6695

The Pool of Consumer Champions (POCC) is a grassroots community of over 800 people who have personally used mental health services and outspoken in their opposition to AB1421. Through their united efforts and collective strength of these individual voices, they are active in advocating for recovery-oriented services focused on wellness and peer support. To learn more about the POCC, contact Khatera Aslami: kaslami@acbhcs.org or Mary Hogden: mhogden@acbhcs.org

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6 comments on “Letter to the Mother of a “Schizophrenic:” We Must Do Better Than Forced Treatment and Laura’s Law

  1. Will, couldn’t have said it better myself! I am a physician who has had the pleasure of having my 37 year old nephew (and Godchild) decide to visit us, his Aunt and Uncle. He is a homeless man (by choice) with severe paranoid schizophrenia (NOT his choice) who has ‘refused’ treatment of any kind after years of forced and voluntary ‘treatment’ plans and programs. Most of the family want “the old Jeff back,” but he prefers the ‘real,’ current Jeff. He was so down a couple weeks back he agreed to try some therapy on my persistent encouragement. He entered the ‘system’ through the local Mental Health Crisis Center, was diagnosed as being psychotic and transferred to a local ‘new’ Behavioral Healthcare Hospital. I offered to stick around to fill out forms (I.e. Informed consent, release of info) but they said “just call tomorrow morning. I did, and was told they couldn’t confirm or deny he was there as I didn’t have “the code.” I informed them it’s because they didn’t give it to me the night before. When they continued to play this ‘privacy’ game I told them I needed a call back from the psychiatrist or staff nurse within two hours or I’d be down to take him out of there. I did get a call back within a hour. The nurse stated she hadn’t been able to get him to agree they could give out and collect information from his aunt and uncle until now. After a forced family meeting where we witnessed gross disrespect for him with the psychiatrist saying “I’m not going to answer your question until you can start making sense” (which meant take the medications I’m prescribing) in response to Jeff’s question “Is this a jail or a hospital?” We agreed to allow him to stay one more day in hopes he would find a treatment that worked. Instead he became angry and smashed an exit sign when they continued to refuse him his cigarettes. (Taking any person who chain smokes ‘cold turkey’ off cigarettes is NOT a good plan, and even worse for a person with schizophrenia.) That intervention ended with his leaving AMA and a vow never to return to a so-called legitimate hospital or clinic. He is a brilliant young man with an unusual brain and method of communicating just trying to survive in a world (community) not accepting of diversity. He deserves better and is often more sane than the sick controlling culture we live in. You are absolutely correct – “people struggling with mental illness deserve the dignity of true help, not false promises.”

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    1. all I can say is ‘wow’ to Will’s article and this reply…at least there are some safe people/places in this world!

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  2. I get it, we have to assume that if our parents want us rounded up by cops and then committed to a mental hospital and stabbed with a syringe full of neuroleptics, and are lobbying for not only their children to lose the right to own their own brains, but strangers too, to lose this right, that this is coming from a place of ‘deep love’?. I’d love to know at what point, what level of state sanctioned violence, maybe T4 euthanasia? does it not become about ‘deep love’? and become about deeply violent biological determinist ideological fanaticism? It is not clear to me at what point ‘coming from a place of love’ becomes outrageous cruel, inhuman, and degrading treatment under United Nations human rights and torture interpretations. 1970s anti-gay campaigner Anita Bryant, could say she ‘loved’ school children enough to keep gay teachers out of a job and in second class citizenship status. The parents of a 15 year old transgender teen that suicided, were pilloried in the press just last month for forcing said teen to Christian reparative therapy. There is love, there is love of control, there is love of some ideal version of your loved one, and there is unconditional love, and there is support.

    If these parents (who believe we are walking brain diseases in need of forced drugging) do love their children, and some, many, of them do, it certainly is not an unconditional love. To not even accept someone existing in the world without them wearing chemical chains, chemical restraints, that is not unconditional love. What we have here is a profound, intractable conflict of visions, these parents, parents who lobby for forced psychiatry laws, by definition are not prepared to listen to lengthy tracts of text such as this, they have shown they won’t even listen to one simple sincere word, the word ‘no’, when their own son tries to assert the right to own his own body and not be assaulted with forced drugging, they can’t even find the humanity to listen to that, so I fear this well written plea, this open letter above, will just be added to the millions of pleas that have fallen on deaf ears, like the pleas of millions of people who have been forcibly drugged by psychiatry in recent decades around the globe.

    People who are motivated to use state violence to silence and crush the will of people called ‘mentally ill’, are by definition not willing to listen to our perspective, pleas, or the reasoning behind our sincere decisions to take or not take psychiatric drugs. They are willing only to legislate it so that it doesn’t matter what we say, wish, will, plead, beg, nothing we say or do will change the fact that drugs will be poured into our bodies by force, by government violence, a violence so complete and inescapable, that it decimates in many of us, most of our connection to society. A society evidently unwilling to face just how monstrous forced drugging really is. Just how much it destroys.

    Once somebody has decided that their family member, or the countless people who will be affected by a forced drugging law they are lobbying for, are nothing but ‘brain diseased’ subhumans, who don’t even deserve to own their own brains, who ‘need’ to be rounded up and forcibly drugged, there is no dialogue to be had, only a monologue, you can talk and talk and try and try to reason with supporters of forced drugging, but the other side simply says nothing as they stab a syringe into your body with a cold, pitiless look on their face.

    After a long time of looking at this issue I truly believe the only daylight to be had in the whole issue is in the court of public opinion, where a blend of concern and self-interest and respect for the human rights of others, can hopefully get us to a place where a majority find these practices abhorrent, terrifying, and cruel, and they become a thing of the past. There will always be a core base of supporters for this state sanctioned violence, hundreds of years of those forced into the ‘mental patient’ role saying one word ‘no’, and not being listened to, should tell us that the hardcore supporters of these violent policies are never going to listen to us. Once ‘authority’ has told them the extremes of life are a ‘brain disease’, arguing with them is about as effective as an Islamic State hostage asking to be let go. In an Islamic State hostage video, there is a powerless captive, and a fanatic or group of fanatics holding sharp steel up to the body of the captive. In forced psychiatry, pretending you can dialogue with someone that has got sharp steel in their hands (the forced drugging syringe), and legislation that allows them to stick that sharp steel into your body no matter how much you scream out in terror and beg them not to, is not going to work.

    I’d like it to be the case as much as anyone that this ‘us and them’ would end, but so long as people are sending the state INTO our bodies using violent force, and so long as people are lobbying for new and refined ways to force this terror on us, there is and will remain an intractable conflict, I liked this open letter, I read it twice, and I understand why it would be considered more effective than a private letter. Maybe some people who haven’t taken much of an interest in this government activity, in this plan to initiate yet more violence against society’s most overwhelmed people, will see how profoundly inhuman and misguided these policies are and come to be our allies.

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    1. I am concerned that what is being presented is a false dichotomy. I have lived with chronic depression and bouts of mania – but because I was very self-aware, I was generally pro-active in my care, and while I haven’t been able to lead a conventional life, I have been able to lead a productive life. Most people would have been unaware of my emotional/mental challenges, because I took control. What I think is missing in the mental health care system is the attitude that people need tools for empowerment over their mental/emotional/social etc, realities. I think when a person is overwhelmed they lose the ability of how to take care of themselves. There have been a few times, when I had reached that point, and had to seek the care/support of family. I never offered myself up to the medical system because I always wanted to have control over my destiny. BUT I have sought private therapy, and psychaitric advice and participated in group therapy. I also have lived with people who are unconscious of their craziness, and while I respect an individual’s right to self-determination, having jealously protected my own, in spite of my own mental health challenges, I don’t agree with the entirely laissez faire attitude toward mental health care that seems to be suggested in this letter. If someone is a PART of society, that is living within it and taking advantage of certain services provided by society, then there will always be certain expectations placed upon individuals to fit into society. And if one was being truly compassionate, as a member of society, one would support community centers that would offer a variety of amenities available to everybody – mind-body healing practices such as yoga, showers, AAA groups, counseling, nutrition classes, fresh clothing, laundry, etc. and that if someone is receiving government aid, etc – that if they exhibit hostile/anti-social behavior that is a danger to themselves or others – that they need to take some responsibility for this – and are given options for doing so. I don’t think we as a society, are doing any favor to people who are suffering to the degree that they can’t even keep themselves clean or sheltered, or manage a modicum of polite social interaction with the world that surrounds them any favors by keeping a totally “hands-off” approach. Perhaps Laura’s law could be an opportunity for compassionate health care clinics to take leadership in addressing the suffering of some of these individuals, and as the programs are “outpatient” – I see that there is a good chance that this could be successful without relegating to force. I think what people forget sometimes, is that in order to “fit” into society, you need to follow certain rules when interacting with society at large. You can do your own thing, in private, but when interacting “at large” the social contract is at play more than ever. The irony is – homeless people who have mental health challenges have the LEAST amount of privacy of anybody in society, so while they are the least able to be socially acceptable when suffering mental illness, they are at the same time expected to be on their best behavior MOST OF THE TIME, because they are out and about with people all the time. Why anyone would allow themselves to descend into a existence of such brutal scrutiny is anyone’s guess.

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  3. Will:

    Thank you so much for this heartfelt post and for your willingness in allowing us to share it with the Children’s Mental Health Network. For the past year we have been bringing together people on both sides of the Assisted Outpatient Treatment debate for respectful dialogue. It is my firm belief that it is only through dialogue that we will be able to move toward a deeper understanding of how best to meet the needs of individuals with severe mental illness.

    Keep writing!

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    1. Will,

      You work is masterful. Lived experiences and learning. What could be more sacred than freedom. Freedom to claim the life that is our own.

      Someone cornered me, an academic,at a recent event and spoke about the ancients and their civilizations. How these societies managed to take care of people who suffered experiences outside the norm. Society’s and history’s most talented artists, engineers, philosophers. We know this is true.

      It begs the question: Is there no one at Google, Apple, or other top companies in Silicon Valley that has something to offer in the way of nurturing, care, and community? Or, do they not say anything about it because they take advantage of brilliance: Use it up and discard it on the streets at the point a person becomes a liability.

      There is so much we could do if we simply thought intelligently about settlement design, the company town of years’ past.

      As you know, I am a father on this journey with his son. Some time segments are good. Some not so good. To take two steps forward and one back is perfectly normal learning. Even in incremental steps, I see learning taking place here at home, in a safe environment. The most only learning that occurs in a hospital or jail is how to avoid them both.

      What these laws might do should frighten us all. Not unless the entire system of caring is overhauled, with much more emphasis on humanity and less on credentials, policies and procedures.

      Reply
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