Letter to the Mother of a “Schizophrenic”: We Must Do Better Than Forced Treatment

Catherine Opie, Untitled 1 (Icehouses) 2001A 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; perhaps he was already in trouble with the police, arrested at the house of his latest obsession.

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 at 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 of how this disheveled young man would respond to me. I had been told he was considered “severely mentally ill,” the worst of the worst, 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 more conventionally, planned a walk up the street to a coffeehouse, explained what had happened in 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 strange behavior led to a diagnosis of schizophrenia, and they seem to be part of a much deeper emotional struggle. I don’t romanticize because I’ve been through psychosis and altered states myself. I’ve been a 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 within 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 not only intelligent, creative, and sensitive – he was 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 strong connection I had with your son. Because I took the time, and perhaps also because of my background and skill, I was quickly able to initiate 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. To reach a man living outside the boundaries of society, I had to join him there, and break the taboo against stepping outside the boundaries of my professional position. I spoke with respect and interest in his world, rather than trying to convince him to “get help.” What, after all, could be more insulting and invalidating than telling someone that their life’s creative and spiritual obsession is just a sign that 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, relate, communicate, and even plan his day and discuss his options. Some topics were clearly pained, skipped over for something else, and he was often strangely 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 broached. 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 distrust, 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 kind concern and offer help.

When you decide 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 whom? Or could it push someone farther away, possibly undermining the connection truly necessary to find a 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 strictly enforce the compliance of these people with medication and hospital care. Your son is, even today, held up as a perfect example of why force is needed. I share your desire to help people in need, which is why I went to meet your son in the first place. And I agree that our broken mental health system needs fixing, including new legislation and services. I do want your son to get support. I do 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 therapeutic relationship with someone genuinely interested. That just wasn’t the man I met that day. I don’t see him as so sub-human that his own voice and perspective should be ignored, rather than understood. I don’t see strange beliefs and an outsider lifestyle on the street in any way justifying the violent injustice of forced treatment. I don’t see him as any different than any other human being, a human who would be terribly damaged by the violence of force, confinement, and assault, regardless of its misguided perpetration in the name of “help.”

That day I met a man possessed by a mysterious artistic and spiritual quest that others around him might never fully understand. He is aware that he is homeless and, perhaps, very afraid deep down, but he is still a person with feelings, vulnerabilities, emotions, and potential. 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 and throughout the world have the same. But no, this is not a man I would want to force into restraints, injections, and confinement. I would not support anyone subjecting him 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? Friendship and trust, in anyone’s reality, can never 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” of the mental healthcare system burden service providers because they are different from 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 on the surface, 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 attain that skill and provide that affinity.

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 the possibilities of the future.

A simple look at the research literature over the past 50 years shows that recovery from what is diagnosed as 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, life-long illness for all diagnosed. 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 needed, not just for your son, but for everyone in a family affected by the strange and overwhelming experience of psychosis. But when parents, feeling 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 their child getting better.

I continue to hear the claim, ‘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 possibility, skill, and resources available 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 quick fixes and false promises.

We can, and must, do better. We must think outside of the false dichotomous 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 want to be met, rather than giving up hope for a human connection with them.

At the cafe where your son and I 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 so 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

WILL HALL, MA, DIPL.PW is a counselor, teacher, writer, and community development worker. Active during the University of California anti-apartheid movement, he went on to work for the Santa Cruz Resource Center for Nonviolence and the Earth Island Institute. In his 20s he was forcibly committed to San Francisco’s public mental health system, and, while in the locked unit at Langley Porter Psychiatric Institute, he was diagnosed with schizoaffective disorder schizophrenia and put on disability. He became a leading psychiatric survivor organizer, including host of Madness Radio, co-founder of Freedom Center and Portland Hearing Voices, and a co-coordinator of The Icarus Project, and he is author of the Harm Reduction Guide to Coming Off Psychiatric Drugs, translated into 15 languages. For his work Will has received the Judi Chamberlin Advocacy award, the Portland Oregon Open Minds award, and the Stavros Center for Independent Living Disability Advocacy award. He has appeared in the media internationally, including Newsweek and the New York Times, and is in the documentary films Healing Voices, CrazyWise, and Coming Off Psych Drugs. A longtime meditator and yoga practitioner, Will is a PhD candidate in the School of Mental Health and Neuroscience at Maastricht University, The Netherlands, and he lives in the San Francisco Bay Area. For more info and to contact Will, go to www.willhall.net. “When I was growing up, I wanted to be a magician. Then I wanted to be a biologist, then I wanted to be a psychologist, then I wanted to be a community organizer, then I wanted to be a philosopher. Now I’m sort of all of them.” — Will Hall interviewed in the Portland Mercury newspaper

About Will Hall 3 Articles
WILL HALL, MA, DIPL.PW is a counselor, teacher, writer, and community development worker. Active during the University of California anti-apartheid movement, he went on to work for the Santa Cruz Resource Center for Nonviolence and the Earth Island Institute. In his 20s he was forcibly committed to San Francisco’s public mental health system, and, while in the locked unit at Langley Porter Psychiatric Institute, he was diagnosed with schizoaffective disorder schizophrenia and put on disability. He became a leading psychiatric survivor organizer, including host of Madness Radio, co-founder of Freedom Center and Portland Hearing Voices, and a co-coordinator of The Icarus Project, and he is author of the Harm Reduction Guide to Coming Off Psychiatric Drugs, translated into 15 languages. For his work Will has received the Judi Chamberlin Advocacy award, the Portland Oregon Open Minds award, and the Stavros Center for Independent Living Disability Advocacy award. He has appeared in the media internationally, including Newsweek and the New York Times, and is in the documentary films Healing Voices, CrazyWise, and Coming Off Psych Drugs. A longtime meditator and yoga practitioner, Will is a PhD candidate in the School of Mental Health and Neuroscience at Maastricht University, The Netherlands, and he lives in the San Francisco Bay Area. For more info and to contact Will, go to www.willhall.net. “When I was growing up, I wanted to be a magician. Then I wanted to be a biologist, then I wanted to be a psychologist, then I wanted to be a community organizer, then I wanted to be a philosopher. Now I’m sort of all of them.” — Will Hall interviewed in the Portland Mercury newspaper
Contact: Website

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