By Marcie Sohara

Many families are struggling to find care for their loved ones with serious brain disorders, or have experienced tragic consequences from the failed mental health system. I too have experienced challenges and heartbreak due to my son Joe’s serious brain disorder, that is, schizophrenia. At times, I honestly didn’t know if there was any hope. I know better now.  

When Joe was nineteen and a freshman in college, he told me something was wrong with him, that he wasn’t thinking right. I was scared and took him to the hospital emergency room. They diagnosed anxiety and depression and prescribed antidepressant medication. But his behavior became increasingly troubling. His father and I tried to help him, but he was becoming more withdrawn and confused.

Just days after the start of the fourth semester in mid-January 2009, he showed up at our house at 6 a.m. and told me he was quitting school because of things that were happening to him there. The next two weeks, trying to figure out what was happening to my sweet son, were awful. 

Joe already had an appointment scheduled for later that month with the psychiatrist, who prescribed the antidepressant. In the meantime, he was becoming more unpredictable, and his behavior was extremely odd. I happened to be in psychotherapy myself, and my therapist told me it sounded like he was psychotic. At that moment, I didn’t fully understand what that meant.  

On January 27th of that year, at our son’s request, Joe’s father and I attended his psychiatrist appointment. When we finished describing Joe's behavior, the doctor asked Joe to step outside. I will never forget what the doctor said next. 

“I’m sorry to tell you that your son has schizophrenia, and you should give up on any hope or expectations you have for his future.” I was devastated. Joe’s father was extremely angry that the doctor would say such a thing. Then he dismissed us with a prescription for an antipsychotic medication and an appointment in three weeks. The doctor essentially told us our son would not have a future.

2009 was an extremely rough year for us. Joe attempted suicide twice and was committed to the psychiatric hospital a total of four times. Each hospitalization lasted for sixty to ninety days. I’m grateful for his father’s excellent insurance coverage and for the doctors who worked with me to get him well. 

After the three hospitalizations due to forced commitments and two suicide attempts, thankfully he was eligible for court-ordered Assisted Outpatient Treatment (AOT) program. The fourth hospitalization was preceded by him tearing up my house. After that, his team got him into an intensive nine-month supervised group home, where he learned about his illness and the importance of taking his medications. That got us through most of 2010. 

When he was discharged from the program, he wanted to come home. I agreed under the conditions that he continue taking his medications and either go back to school or get a job.    

Working part time and taking part-time classes, he earned an associate’s degree in business in 2013. He then attended Penn State at a campus close to home and graduated with a bachelor’s degree in May 2016. In addition, he was inducted into the National Honor Society for business and marketing. He made the dean’s list for several semesters and graduated with honors.

It turns out, the doctor who told us to give up all hope was wrong. 

Joe was given many opportunities for wellness. He had a great AOT team and a very supportive family. Some really great staff worked with us when Joe was in the inpatient unit, and his insurance allowed him the time he needed to get well. 

In the years since his diagnosis we have had some setbacks, but only two short additional hospitalizations. Keeping him stable isn’t easy, and certainly COVID didn’t help, but overall he continues to move forward. I am still concerned about what the future holds for him, but preventing another hospitalization is my primary focus.  

Undoubtedly, all doctors would want this kind of outcome for their patients, but many either do not believe it’s possible or just don’t care enough to provide meaningful help. Similarly, many in the public would support these kinds of outcomes, but don’t understand the issue because they are not directly affected by serious brain disorders. We must do our best to educate them, and if we cannot bring them along, learn how to work around them to get the necessary help for people like Joe.

My deepest, or heartfelt, wish is that every individual suffering from schizophrenia and other serious brain disorders gets the same help as Joe. They too could have the opportunity to be productive members of society. 


If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.

#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy #ShatteringSilence

Anonymous

Being an advocate is a role I never thought I could do. When I was a young adult, my brother’s schizophrenia and its effects on our family were too traumatizing for me. It is not easy watching an illness rob a loved one of their future. Seeing the illness up close brought guilt, sadness, and regret, not to mention fear and anger. Much of the time, I avoided thinking about him or his illness. It was easier to pretend his schizophrenia didn’t exist. 

But now that I am more mature and have a family of my own, I can no longer stay silent. I know I must speak out and do what I can to change the way serious brain disorders are treated in this country so that future generations no longer have to suffer. 

Growing up, I envied my brother Eric in just about every aspect—he was more confident, wittier, and seemed to make friends without effort. He was smart and kind-hearted. A stand-out athlete, Eric loved sports, especially basketball. He was two years older than me, and even though he teased me sometimes, he watched out for his little sister. 

During childhood, he showed no obvious signs that things were amiss. As a teen, he did drink and smoke marijuana, but that wasn’t so unusual. Ours was a two-parent family with a house in the suburbs—no trauma, abuse, or unusual circumstances. No one would have imagined that schizophrenia lay dormant in his brain, ready to strike in young adulthood.

As he went off to college, Eric seemed to have a bright future ahead. He enjoyed his classes, particularly philosophy and English, and got decent grades. The summer after his freshman year, he was ambitious enough to start a summer business with a friend, renting out beach boogie boards. But not long after, he began veering off his path. He dropped out of college, moved back to our parents’ home and drifted aimlessly for months. 

He worked his way through several menial jobs—pizza delivery, cook, landscaping—quitting each one within weeks, sometimes days. Then he stopped working altogether, broke up with his girlfriend and no longer spent time with friends. 

He rarely showered and wore odd, mismatched thrift store clothing. Sometimes he would disappear from home and turn up several days later. He spent most of his time holed up in his room or roaming the woods near our house. He was nocturnal, staying up all night, then crashing in the morning. 

There were other odd behaviors. Once when I was playing the piano, he sidled up to me and began banging away on the keys like a child. He seemed mesmerized by the sound, even though he had never played before. I overheard him making plans to form a rock band and become a musician, though he had never been musical. He lived in his own reality. 

One afternoon, I heard him laughing in his room. I looked in and noticed a wild glint in his eye as he sat alone on his bed. “What’s so funny?” I asked. He said he was remembering a joke, but his explanation didn’t ring true. I began to feel afraid, but of what, I couldn’t say. I started locking my bedroom door at night.

Delusions of grandeur, trouble sleeping, inappropriate laughter, social withdrawal—the signs of a serious brain illness were there. But although my parents were desperately worried, the possibility of schizophrenia never dawned on them, or me. 

And why would it? “Crazy” was Jack Nicholson in “The Shining,” or the homeless person muttering to himself on the street. Looking back, I shake my head at how naïve we were.

Nonetheless, my parents were concerned enough to take him to a psychiatrist. The doctor misdiagnosed him with depression. Eric refused any medication, insisting there was nothing wrong. “You’re the ones who are depressed,” he would say to us. My parents couldn’t convince him to go back. Untreated, his disease progressed.

Eric didn’t tell anyone he was hearing voices. He didn’t say a word about his bizarre thoughts, which we would learn about only later. He believed the girlfriend he had recently broken up with had died of cancer (she was alive and well). He fixated on my dad, who he thought was somehow trying to harm us. 

At times, he thought he was an NBA star—other times, a famous musician. He heard newscasters commenting on him, broadcasting his actions to the world. Birds called him the “Son of God.”’ He was a shaman and a doctor. At times, he didn’t know if he was dead or alive. As absurd as these delusions seemed, to him they were reality. 

Like 40 to 50 percent of people with schizophrenia and bipolar disorder, Eric had anosognosia, a symptom that prevents a person from understanding they are ill. His lack of insight into his own brain illness is why, when he had the opportunity to be treated by a psychiatrist, he refused. He didn’t believe he was ill. No matter how many times my parents tried, they could not convince him to seek treatment, and because he was an adult, no one could make him.

I often wonder what life might have been like if we could have forced him into treatment. With a proper diagnosis and medication, maybe his voices could have been quieted, and he could have come to his senses before acting on his delusions. 

I was at work that day in late August when my mother called me with the news. I couldn’t comprehend what I was hearing. Eric had attacked my father with a hammer, striking him multiple times in the head. My father was flown to shock trauma, where he underwent emergency surgery to remove parts of his skull from his brain. He was put into a medically induced coma, and we didn’t know whether he would survive.

Eric was arrested and taken to jail. After a psychiatric evaluation, he was diagnosed with paranoid schizophrenia, a chronic brain disorder that involves delusions and an altered perception of reality. Once he was treated with medication, the fog began to lift, and he realized the horror of what he had done. His letters and phone calls to my mother revealed a distraught and terrified young man. When we visited him in jail, he appeared confused and often cried. 

My father, meanwhile, spent months in a rehabilitation center and was left with a brain injury that impaired his balance, his eyesight and cognitive function. Miraculously, he recovered the ability to walk and talk but could no longer work.

After waiting in jail for a year, Eric was found “not criminally responsible” due to his schizophrenia and was transferred to a secure state hospital, where he received treatment. After another two years, he was released to group housing and community services. He complied with his treatment and lived a semi-independent life with the support of my parents. He was never violent again. He volunteered with NAMI educating others about schizophrenia and got a job with a mental health organization helping others with serious brain disorders. But until his death eight years ago from a heart condition, he struggled daily with guilt.

In the months when Eric was in jail, I wrote him letters trying to understand why he would want to harm our father—a kind and gentle man who loved us and did everything he could for his family. I would try but fail to square his actions with the brother I had shared my childhood with. It simply made no sense. 

And then I realized, that was the point. His actions didn’t make any sense, because his brain was severely impaired. The organ he relied on to make rational decisions was malfunctioning. His brain synapses were misfiring, creating a distorted reality. 

In one of my brother’s letters, written after he was on antipsychotic medication, one line stood out: “You could come to the conclusion that I am a ruthless person and did a horrible act that shouldn’t be forgiven,” he wrote. “Or you could come to the conclusion that I was out of my mind due to an illness that had manifested years before and completely caused my self-destruction, as my history shows.”

There were only two choices. He was not a ruthless, evil person—he was just an unlucky young man. 

Today, I advocate for all those unlucky enough to be stricken with a serious brain disorder through no fault of their own. Too many people are suffering—not only those who are ill but also their families. Alone I can’t make a difference. But by joining other advocates at NSSC, I hope, together, we can create a better future. 


If you have personal experience with serious brain disorders—whether as a family member, a professional, or a person with an illness—we encourage you to share your story. Email coordinator@nationalshatteringsilencecoalition.org.

If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.

#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy 
#ShatteringSilence

By Robert S. Laitman, MD
​
Schizophrenia is a complex genetic condition that presents as a neurodevelopmental and, far too often, neurodegenerative disease. It is a spectrum of disorders that, without treatment, results in a chronic psychotic state in most individuals. 

Schizophrenia needs to be reclassified for what it is, a neurological syndrome. A better term to describe this varied condition is psychotic spectrum disorder. We are already aware of 108 genes that will increase the risk of developing schizophrenia. In families with these genes, clusters of other mental illnesses such as attention deficit hyperactivity disorder (ADHD) are also common. These individuals may have been spared some of the genetic risk or were not subjected to other stressors in life from conception onward (trauma, infections, drugs) that turn on at-risk genes (epigenetics) that would cause the full expression of schizophrenia. 

My immediate family is an example of how stressors may affect gene expression. My grandfather and uncle had schizophrenia, and my aunt struggled with bipolar I disorder with psychosis. I had an idyllic upbringing with an ACE (Adverse Childhood Experiences) score of 0 and arguably was relatively spared. Yet my son, also with an ACE score of 0, was subjected to an in-utero trauma of gestational diabetes and developed schizophrenia.   

Schizophrenia can be considered primarily a disease of gating. Gating is the ability of an individual to focus attention on a task while tuning out extraneous internal and external stimuli. People with schizophrenia frequently do not gate well and are therefore continuously flooded by stimuli. Even early in life, many people who eventually develop schizophrenia are much less social and have attention deficit disorders. No matter how hard they try, their minds remain jumbled. With this “unquiet mind,” they are increasingly stressed, resulting in inappropriate limbic activation. As further neurodevelopment occurs, especially during adolescence, this entire process accelerates as synaptic pruning (the brain’s natural removal of unneeded connections) occurs. The ability to gate worsens, and stress accrues. 

Further limbic activation, (the limbic regions of the brain regulate emotional responses) driven by dopamine, occurs and, with this, symptoms of hallucinations and delusions become prominent. As gating continues to diminish, negative symptoms such as lack of motivation and social isolation appear, and cognition declines. All this leads to a “break” from reality. Often during this time, patients begin smoking cigarettes in an attempt to self-medicate and improve gating. Others try to quiet their minds with marijuana, which unfortunately, in these susceptible individuals, further exacerbates the psychosis. 

Schizophrenia, therefore, needs to be thought of as a disease that often starts before birth. For example, one primary risk gene encodes the alpha-7 nicotinic receptor. This receptor system in utero is responsible for the full neurodevelopment of the brain’s “operating systems.” After birth, this receptor is positioned on inhibitory interneurons that are responsible for turning on and off sensory neurons. This process is a critical component of the gating mechanism. As sensory input comes in from a variety of sources, interneurons will shut down neurons that are processing the extraneous while turning on neuronal pathways that allow for focused attention. In patients with schizophrenia, this receptor system is not fully developed. From an early age, these children will often experience social anxiety, attention deficit, and other behavioral issues. 

Not everyone with this gene develops schizophrenia. However, if these same individuals early in life are subjected to physical or emotional trauma from in utero (e.g., infection, drug abuse, starvation) to childhood physical or psychosocial stressors, there is a propensity for epigenetic triggers to give full expression to the illness. Even in individuals without obvious stressors, the illness may come to fruition. For instance, this can occur if they have another gene that results in overabundant synaptic pruning.

Synaptic pruning is a normal stage of development during adolescence and ideally would rid the brain of neural pathways that are redundant or harmful and strengthen “good” pathways. This gene is responsible for the expression of complement. Complement is part of the immune system that enhances the ability of antibodies and immune cells to clear microbes and damaged cells from an organism. It also promotes inflammation. When this gene is overexpressed, too much complement deposits on neurons, resulting in the microglia destroying or pruning these cells. The pruning is often most extreme in the prefrontal cortex, where most executive functioning occurs. In the general population, this gene by itself increases the risk of developing schizophrenia by 25 percent.1 Essentially these individuals were dealt an unfair hand. 

The pathophysiology of schizophrenia spectrum disorders provides a format for a reasoned approach to treatment. We need to start at the beginning. We know that choline supplementation in pregnancy appears to improve the outcome of children who are at high risk of mental illness. Supplemented children have reduced rates of ADHD and social isolation in the first four years of their lives.2 The hope is that these children will have a reduced risk of developing schizophrenia. In rats, it has been shown that choline supplementation increases the expression of alpha-7 nicotinic receptors. This results in normalizing neurodevelopment and normal gating. Four grams, twice a day of Lecithin (phosphatidylcholine) should become a routine prenatal supplement. Once the child is born, attempts should be made to reduce possible epigenetic triggers. Inflammation is one of these triggers. For this reason, fish oil has been proposed as an early supplement in at-risk individuals. One gram of fish oil is innocuous and something that McGorry has demonstrated to decrease the progression of the prodromal syndrome to a schizophrenia syndrome.3

Finally, early intervention in psychosis is critical. Inciting agents that are known to increase the risk of developing psychosis, such as stimulants and cannabis, should be eliminated. And, agents that are effective at attenuating the syndrome should be used as early as possible. Clozapine, for this reason, should be used at the inception of illness. Not only is it the most effective agent, it is the only agent that has direct effects on the microglia and blocks the overabundant synaptic pruning. Finally, clozapine has been shown to effectively restore alpha-7 nicotinic receptors at the interneurons. This leads to improved gating and continued improvement.4 


Why clozapine first? 

The initial response to any and all antipsychotics for initial treatment is reported to be anywhere from as low as 40 percent to as high as 70 percent. When a patient with schizophrenia does not respond initially and requires a second antipsychotic, not including clozapine, the response rate is seven percent, and usually, this is only a partial response. However, when this same refractory patient is given clozapine, the eventual response has been reported to be 50 to 70 percent.5 My results have been even better than this. A response to clozapine can be delayed for over one year, so it is important not to give up prematurely. The current guidelines have clozapine as only a third-line agent. There is now enough clinical evidence to move clozapine up to a second-line agent at the very least. My contention is that it should be the first agent used.


Is clozapine the best choice as a first-line agent? 

Clozapine has shown advantages over other typical and atypical antipsychotics clinically, neuropsychologically, and socially. Clozapine contributes to the improvement of positive, negative, affective and cognitive symptoms in addition to reducing drug abuse, aggressive behavior by 38 percent when compared to Olanzapine and Haldol, and suicide attempts by 84 percent when compared to typical antipsychotics and 25 percent with Olanzapine.6 It is superior in terms of therapeutic adherence,7 quality of life, self-perceived satisfaction with treatment, and overall survival.8,9,10 Furthermore, clozapine is generic and, despite the stringent monitoring required, has been demonstrated to be the most cost-effective antipsychotic. Special emphasis on early intervention is critical to stop clinical, neuropsychological, neurophysiological, and neurostructural decline. Effective treatment using pharmacology, psychotherapeutic modalities, and psychosocial support needs to be the standard. A global supportive approach can change the trajectory of the illness and often restore function to the premorbid state. In the RAISE trial, they found that early effective treatment in the first 18 months of the illness resulted in the best outcome.11 However, even in this population, the longer the duration of untreated psychosis, the worse the outcome. Further support of this was provided by Yoshimura in 2017.12 They demonstrated a critical treatment window for clozapine treatment of resistant schizophrenia. Treatment after 2.8 years of known disease did not yield nearly as good outcomes as earlier treatment.13

In the 2017 Schizophrenia Bulletin, Schoenbaum reported the 12-month mortality in commercially insured young people with incident psychosis in the United States.14 It is an astounding 24 times greater than the general United States population aged 16 to 30. We know that most of this excess mortality is from suicide, violence, and concomitant drug abuse. Clozapine has unique beneficial effects in all domains. We are failing these individuals, as clozapine use in this setting in the first year is presently nil. 

Another critical analysis supporting this argument was published in JAMA Psychiatry and authored by Tiihonen. He looked at the real-world effectiveness of antipsychotic treatments in a nationwide cohort of 29,823 patients with schizophrenia. Of these, 4,603 were newly diagnosed. In Sweden, prospectively gathered national databases were linked to study the risk of rehospitalization and treatment failure from July 1, 2006, to December 31, 2013, among all patients with schizophrenia from age 16 to 64 years in 2006. Clozapine and long-acting injectable (LAI) antipsychotic medications were the pharmacologic treatments with the highest relapse prevention rates. The risk of rehospitalization was 20 to 30 percent lower for those patients treated with clozapine or long acting injectables (LAIs) overall. The lowest rate of treatment failure was observed for clozapine with the LAIs in a distant second place. All other oral antipsychotics outside of clozapine were inferior in their efficacy.15 

Given all of the overwhelming data of clozapine’s clear superiority in all settings,16 I believe that using clozapine at the debut of the disease gives the patient suffering from schizophrenia the best chance for success. Resistant schizophrenia was merely a “big pharma” construct to extend a patent giving clozapine a new drug indication. It is time that this far too often devastating illness is given the appropriate early aggressive treatment required to get the best outcomes.
​


1) Freedman, R., and R. G. Ross. “Prenatal Choline and the Development of Schizophrenia.” Shanghai Archives of Psychiatry , vol. 27, 2015, pp. 90–102.
​2) Freedman, Robert, et al. “Higher Gestational Choline Levels in Maternal Infection Are Protective for Infant Brain Development.” The Journal of Pediatrics, vol. 208, 2019, pp. 198–206., doi:10.1016/j.jpeds.2018.12.010.
​3) McGorry, Patrick D, et al. “Early Intervention in Psychotic Disorders: Detection and Treatment of the First Episode and the Critical Early Stages.” Medical Journal of Australia, vol. 187, no. S7, 2007, doi:10.5694/j.1326-5377.2007.tb01327.x.
4) Opler, Lewis A., and Robert Laitman. Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine: Hope & Help. 4th ed., 2017.
​5) Stahl, Stephen M., and Jonathan M. Meyer. The Clozapine Handbook. Cambridge University Press, 2020.
​6) Meltzer, Herbert Y. “Clozapine Treatment for Suicidality in Schizophrenia: International Suicide Prevention Trial (Intersept).” Archives of General Psychiatry, vol. 60, no. 1, 2003, p. 82., doi:10.1001/archpsyc.60.1.82.
​7) Lieberman, Jeffrey A., et al. “Effectiveness of Antipsychotic Drugs in Patients with Chronic Schizophrenia.” New England Journal of Medicine, vol. 353, no. 12, 2005, pp. 1209–1223., doi:10.1056/nejmoa051688.
8) Meltzer, Herbert Y. “Clozapine.” Clinical Schizophrenia & Related Psychoses, vol. 6, no. 3, 2012, pp. 134–144., doi:10.3371/csrp.6.3.5.
​9) Taipale, Heidi, et al. “20‐Year Follow‐up Study of Physical Morbidity and Mortality in Relationship to Antipsychotic Treatment in a Nationwide Cohort of 62,250 Patients with Schizophrenia (FIN20).” World Psychiatry, vol. 19, no. 1, 2020, pp. 61–68., doi:10.1002/wps.20699.
​10) Tiihonen, Jari, et al. “11-Year Follow-up of Mortality in Patients with Schizophrenia: A Population-based Cohort Study (Fin11 Study).” The Lancet, vol. 374, no. 9690, 2009, pp. 620–627., doi:10.1016/s0140-6736(09)60742-x.
​11) Kane, John M., et al. “Comprehensive versus Usual Community Care for First-Episode Psychosis: 2-YEAR Outcomes from the NIMH Raise Early Treatment Program.” American Journal of Psychiatry, vol. 173, no. 4, 2016, pp. 362–372., doi:10.1176/appi.ajp.2015.15050632.
​12) Yoshimura, Bunta, et al. “The Critical Treatment Window of Clozapine in Treatment-Resistant Schizophrenia: Secondary Analysis of an Observational Study.” Psychiatry Research, vol. 250, 2017, pp. 65–70., doi:10.1016/j.psychres.2017.01.064.
​13) Stahl, Stephen M., and Jonathan M. Meyer. The Clozapine Handbook. Cambridge University  Press, 2020.
​14) Schoenbaum, Michael, et al. “Twelve-Month Health Care Use and Mortality in Commercially Insured Young People with Incident Psychosis in the United States.” Schizophrenia Bulletin, vol. 43, no. 6, 2017, pp. 1262–1272., doi:10.1093/schbul/sbx009.
​15) Tiihonen, Jari, et al. “Real-World Effectiveness of Antipsychotic Treatments in a Nationwide Cohort of 29 823 Patients with Schizophrenia.” JAMA Psychiatry, vol. 74, no. 7, 2017, p. 686., doi:10.1001/jamapsychiatry.2017.1322.
​16) Vermeulen, Jentien M, et al. “Clozapine and Long-Term Mortality Risk in Patients with Schizophrenia: A Systematic Review and Meta-Analysis of Studies Lasting 1.1–12.5 Years.” Schizophrenia Bulletin, vol. 45, no. 2, 2019, pp. 315–329., doi:10.1093/schbul/sby052.

By Khadeeja Morse

In a psychotic episode, my son, Mikese, drove a car into a family who was bicycling outside their home on June 24, 2018. Pedro Aguerreberry, a 42-year old father of two sons, aged three and eight, was tragically killed as a result.

The state of Florida has determined that Mikese is not guilty by reason of insanity. On April 19, a judge will finalize this decision and determine where Mikese needs to be placed. 

This horrible tragedy might never have happened if Mikese had received the treatment he needed—the treatment his brain illness deserved, and the treatment my son pleaded for when he took himself to our local police station and confessed he might hurt someone.  

We will never stop reading about horrible events like my family’s until more people understand the obstacles to treatment our loved ones face, and until unjust laws are changed. That’s why I talk back. 

Our fight continues to free Mikese from the criminal justice system and allow him to be treated in a psychiatric hospital.

We seek to have him removed from the criminal justice system completely, with no oversight. Mikese’s civil and legal rights were violated from the very beginning. Mikese was not in his sound mind to even be able to accept his Miranda rights based on all of the evidence at the time of the arrest. This was well documented in all of the records from the day of the arrest. 

Why should Mikese be removed from the criminal justice system? There are a number of reasons. 
​
Beyond the Mental Illness Stigma Is a Brain Disorder
Most people don’t realize schizophrenia and bipolar disorder are actually serious brain disorders (SBD). The American Psychiatric Association describes both schizophrenia and bipolar disorder as brain disorders. 

Being diagnosed with one of these disorders is bad enough. Having a combination, which is what Mikese has, is worse. To further complicate things, Mikese also suffered from anosognosia, which is when a person lacks awareness of their illness. Anosognosia is a common symptom of schizophrenia and bipolar disorder.

Mikese had the wicked trifecta of schizophrenia, bipolar disorder and anosognosia. The hard, cold truth is that many people suffering from these illnesses end up homeless or incarcerated.


The IMD Exclusion and How It Contributes to Tragedy 

The IMD exclusion prevents federal Medicaid funds from being used to care for individuals aged 21 to 64 in institutions for mental disease with more than sixteen beds. It basically discriminates because an illness is classified as “mental” instead of medical.

Since there’s no funding for mental illness, even if there are hospital beds available, a person with an illness classified as a mental illness can’t fill the bed. He simply gets released to his own accord, like Mikese was.

An excellent article by the National Shattering Silence Coalition explains why and how policies like the IMD exclusion discriminate against people with SBD, which is typically referred to as serious mental illness (SMI).


Why Classification Matters

I can’t give you a better example of why classification matters than another heartbreaking news story that happened on the same day as our tragedy. A distraught mother describes losing consciousness due to a medical emergency while bathing her infant daughter. Her baby drowned, and sheriffs classified this as an accidental drowning. You’ll hear her say she had no idea what happened. Click here to watch.

This video is especially hard for me to watch because when the police were at our house interrogating Mikese, I recall him saying the same thing as this mother. He said he felt something take over his body, and he didn’t know what happened.

The mother has a medical illness. Mikese also has a medical illness, but his is classified as a “mental” illness. Both conditions led to actions that resulted in loss of life. Yet each situation was handled very differently by the medical and legal systems.

Now can you better understand the ridiculousness of the IMD exclusion?

HIPAA Laws Further Complicate Things
In an additional unfortunate and related twist, HIPAA privacy laws often prevent families from finding out any information about their loved ones before, during, and after hospitalizations.

What’s worse is that loved ones are often released to the streets, alone, with no support or guidance. They are left to fend for themselves while managing a medical condition that significantly impairs how they think. How does that make sense?

Can you imagine just releasing to the streets someone suffering from a stroke or heart attack before they were fully recovered, without any notification to a family member or loved one about the condition, care, or treatment?


Deadly Duo

The deadly duo of the IMD exclusion and family-unfriendly HIPAA laws often creates an insurmountable barrier for families. I call it a deadly duo because this combination is what led to the tragedy.

When Mikese took himself to the police, they “Baker-acted” him and he was admitted to Gracepoint, a psychiatric hospital in Florida for people deemed a threat to themselves or others. 

The Baker Act is the authorization to involuntarily confine someone for up to seventy-two hours. It is important to note that while the Baker Act involves involuntary confinement, Mikese requested help by initiating contact with the police. The fact that he sought help is part of why he should be freed from the criminal justice system and allowed to get the help he was seeking before the tragedy. 

Mikese was still psychotic at the hospital, so much so that we had to take over his medical decisions because he wouldn’t take medicine and attacked a public defender who came to see him.

He was kept in the hospital for about seven days and released because he was supposedly stable. We know he was far from stable. Despite needing longer treatment to stabilize, he was prematurely released from the hospital because there was no funding for “mental” illness. The IMD Exclusion negatively impacted him. 

Also, there was no aftercare to support him when he was discharged. Since he’s an adult, Mikese was released to the streets, alone, with a messy stack of hard-to-read paperwork, a bus pass and a “good luck.” Within days of his release, the tragedy happened.


Proof Is in the News

When we realized the police were not going to be truthful about what happened with Mikese, we knew we needed to speak up.

This was our first formal interview with a local news station. Listen all the way to the end when the reporter speaks to a local expert about the lack of available funding and space to support patients with mental illness. 

As I have often said, this crisis of lacking mental health care is the worst kept secret in the country, getting very little media attention or funding.


Who Else Will Be Held Accountable?

This is why, after another local news story about Mikese’s sentencing, I wrote an open letter on Facebook to State’s Attorney Andrew Warren, asking who else he would hold accountable for Pedro Aguerryberry’s unfortunate and unnecessary death. On air, Warren states, "This case shows the consequences of Florida's broken mental health system, and the victim's wife and kids are left holding the pieces.” 

His statement shows the great hypocrisy of the system, acknowledging only one side of the equation. It is true that the Aguerryberry family experienced a horrific loss that never should have happened. However, they aren't the only ones who are left holding the pieces.

Far too often, families like ours, who have been desperately trying to support our severely mentally ill loved ones with very few external resources, are left holding the sharpest pieces of the broken mental health system. We are marginalized and vilified because of the undesirable behavior of our loved ones. We get words and platitudes of understanding and support, especially after a tragedy or around election time, but not real, sustainable or meaningful proactive support.


Why I Talk Back

Click here for all images from my TikTok video. As you look at them, please keep in mind the whole story.

I talk back because my son couldn’t speak for himself. I talk back because it was very clear to us very early on that the police weren’t going to be honest about his brain illness. They had already begun to vilify and dehumanize Mikese during their press conference. They left out vital information about his illness and even the fact that they were the last ones to hospitalize him.

I talk back because there are thousands of people suffering from untreated SBDs. I talk back because those thousands of people have thousands of loved ones who are doing the best they can for their seriously ill loved ones. They too suffer profound pain and trauma as they watch their loved one slip away and are helpless to do anything about it.

I talk back because we need to be seen, heard and acknowledged. I talk back because we need help and not just lip service around election time or after a tragedy.

I talk back because we ask for help but what we usually get are bloodied fingers from the sharp, broken fragments of a failed mental health system we’re forced to piece together with our bare hands.  


How You Can Help

I am a proud member of the National Shattering Silence Coalition and very much support their programs and platforms. The Calls to Action section of their website offers some great ways you can help support our cause.

Please also continue to keep our family and the Aguerryberry family in your thoughts and prayers.

Namaste.


Why do you talk back? 

Please share your stories with us. Our stories must be shared with the general public who doesn't have a clue what we are going through. They do not know how incredibly broken our system of care for those with serious brain illnesses is. They have no clue that we are unable to get help for our loved ones. They have no clue that, instead of receiving treatment for their illnesses, our loved ones are abandoned, criminalized, and left to rot in jail or die in our streets. It's up to us to speak out and inspire change. 

They must also be shared with Congress, our President, and anyone with the power to bring about the change we so desperately need. ​

Submit your stories to coordinator@nationalshatteringsilencecoalition.org. Please feel free to write them or, better yet, record an audio only if you wish to remain anonymous, or a video, if you are OK with us using your name.


Thank you,
Jeanne Gore
Coordinator & Co-Chair Steering Committee, NSSC

By Kartar Diamond

My son has been evicted from nine board and care homes, a dual diagnosis center, and a couple of sober living houses. This is not unusual for a man in his twenties with schizophrenia. In some instances, he was evicted for causing property damage. He used to punch holes in the walls, and when asked why, he would blame the wall! He told me that the drywall was flimsy and thin.  

So, who do I blame here? Do I blame the wall? The board and care? My son? The way I raised him?

I must blame the system. The system does not provide what our loved ones with schizophrenia need. It promised my son would have a roof over his head and be cared for, and it broke its promises, again and again, in so many ways. Because of their illnesses, our loved ones are not able to hold the system accountable and demand what they need. We family members beg the system for what turns out to be intermittent, barely adequate housing, where any brief crisis in our loved ones’ illness is enough to cause eviction.

I can only speak about our experiences in Los Angeles County, California. But I assume that the licensed (and unlicensed) housing challenges are similar across the nation. I am in the paradoxical position of wanting more board and care homes—licensed supportive housing specifically for people with serious mental illness—to be built in my county. Even though the reality of living in a board and care with a serious mental illness is pretty grim, the alternative for people with a brain illness is usually the street or jail.


Our Odyssey from One Short-Term Roof to Another

We first tried the sober living house option because therapists said my son should live with higher functioning people. Unfortunately, the owners and managers of the sober living houses were not educated or well-equipped to handle mental illness; they were trained to manage addiction matters. So my son did not stay there long.

We also tried a dual diagnosis facility, a name that implies that they cater to both mental illness and drug addiction, a common co-occurrence. In our case, the facility failed my son in both categories. Instead of giving him an eviction notice of thirty days, or even a few days, they ordered him to get out of his home in ten minutes. What they did to him was clearly an overreaction and illegal, and it propelled him into a period of homelessness.

Our only other option was a board and care.  


What Is a Board and Care?

A board and care in California is a licensed facility specifically for those with mental illness. Let’s be honest: No person of sound mind would choose to live in a board and care. Some are better than others, but few have a wholesome, cozy, homey vibe. Most are not in particularly safe neighborhoods, and most are within walking distance of liquor stores and drug dealers.

In your average board and care, a person shares a bedroom in a noisy, dilapidated building with old furniture. There may even be bedbugs. My son lived at board and care homes with anywhere from fifteen to one-hundred-thirty people; occupancy numbers did not seem to correlate with the quality of care. Often, at least a few residents are actively unstable, behaving in psychotic and concerning ways that need professional attention. Unfortunately, many board and care homes employ people at minimum wage with no obvious training in mental health care.

Residents may go for weeks or months without showering, changing their clothes, or brushing their teeth. Staff will ignore serious lapses in basic personal hygiene and well-being. The only ill people spared from this neglect are those with actively involved family members.

Some board and care homes do not feel safe. Even if the building has locks for every room and surveillance cameras everywhere, your loved one cannot be sure their personal possessions will not be stolen. You cannot even be 100 percent sure that your loved one will not be assaulted by other residents—or worse, by staff members.

Very few board and care homes offer features or services that are genuinely therapeutic. Some offer recreational activities, but most residents don’t participate and little is done to motivate them. Lack of motivation is a common sign of schizophrenia. Many of those with schizophrenia don’t even enjoy watching television. Board and care homes are better than homelessness, but they are just about “warehousing people,” to quote one of the psychiatrists I was commiserating with one day. They are not about treating or curing people. This can be terribly disappointing for a parent to realize.


What’s on the Menu and Who Can Complain

Well-meaning people suggest that schizophrenia can be cured with a superlative diet and nutriceuticals. While this hope seems unrealistic, nutrition is very important to cognitive function, physical health, and moods. The sad fact is that board and care homes cannot afford to always serve fresh, nutritious food, even if they want to.

Your three meals and two snacks per day are generally not particularly healthy or tasty. Board and care homes buy in bulk and probably shop at Food Banks as well.

One memorable day, my son called me to say that he needed me to place $10 on his debit card so that he could take himself out to lunch. That day he was given a half-frozen, half-burned TV dinner for lunch, which was inedible. 

I had to call the board and care to confirm this was really the case. As a parent of a man with schizophrenia, I am never 100 percent sure if my son is willfully lying to me or having a delusion. The board and care quickly confirmed that they had a “problem” in their kitchen that day and served residents frozen and burned TV dinners for lunch.  

This kind of event shows how powerless our family members are to demand quality care. A non-mentally ill person would create a scene if they received such disrespect in a restaurant, and management would apologize. But if a mentally ill person expresses anger, staff may well ignore the person’s outrage, even when it’s justified, and chalk it up to their mental illness.


The Ideal Board and Care Would Offer Support and Services

For a person with serious mental illness to stand any chance of recovering or gaining more functionality, they need all kinds of support and services from family members and mental health professionals. But the costs involved are too much for many families to bear. Depending on a number of other influences, living in a board and care can make a person more, instead of less, symptomatic.

Board and care homes cannot evict people who don’t take their medication. If residents refuse medication, the staff can only wait and see if they become psychotic enough to qualify as being dangerous to themselves or others. After this legal/medical distinction is met, they can call the police or case managers and have them placed on involuntary holds at hospitals. This is often the board and care home’s ticket to eviction.


The Paradox: We Desperately Need More Board and Care Homes

Board and care homes in California are closing at alarming rates because they run at a deficit. Exact statewide rates of closure are unavailable, but the beds are rapidly disappearing. Los Angeles County alone lost 949 beds between January 2016 and May 2019, according to August 2019 figures from that County's Department of Mental Health. Since 2012, San Francisco County has lost more than a third of its board and care homes serving people under age sixty. A 2018 study by individuals working with the Los Angeles County Department of Mental Health and the Los Angeles County Board of Supervisors revealed that many board and care homes in the county need a budget twice the one they work with to just break even. Board and care homes accept as full payment $1,000 per month with many residents using their entire Supplemental Security Income (SSI) benefits to pay for their room and board. I think it costs more per day to put your dog in a kennel. Who in their right mind would open a new board and care with that kind of business model? This is a real crisis for people with mental illness who cannot live on their own or at home with relatives, and who need constant supervision.

With the recent closings, an increasing number of unlicensed group homes have cropped up that have all the above flaws and more, and do not answer to any regulators. They can provide or withhold whatever services they want. This is a step in the wrong direction.

While board and care homes are severely lacking in what they offer residents, we actually need more of them, not fewer, to prevent more homelessness among the mentally ill population. An estimated 25 percent of the homeless population has serious mental illness in the United States, and among those who are chronically homeless, the rate may be as high as 33 percent to more than 50 percent in some areas. We know that it costs less to properly provide care for people with serious mental illness than to allow them to succumb to the revolving doors of hospitalization, incarceration, homelessness, and legal services required when they aren’t provided the very basics to live safely and stabilize their mental illness. I often grieve over how much worse the situation will get before it gets better, if it ever does.

State or federal benefits like SSI should be greatly increased or supplemented to subsidize stays in licensed board and care homes, or government and nonprofits need to build licensed housing specifically for the care of people with serious mental illness, or both. Residential drug rehabilitation facilities, unlicensed group homes, sober living facilities, independent apartments, and mixed housing don’t do enough to move people with serious mental illness off the street and out of jail. 

By Alison Monroe

They want you to keep quiet. Talk anyway.

We family members of the sickest people with mental illness need to speak up because we have firsthand truth very few people have.

Unlike most people, we know mental illness is real.  We know mental illness is not just the emotional issues and trauma and dysfunction that most people have. Our family members have a physical illness that affects their brain.  They may have trauma and dysfunction and soul-sickness in addition to a brain illness, but because of their brain illness they cannot be made morally responsible for their own survival.


It Took Me a While to Know What I Was Talking About

D is 24 now, a schizophrenic meth user.  For years the system has regarded D's problem as motivational, and it still wants to see it that way. The hospitals she stayed at tended to define her problem as drug abuse with some adolescent rebellion mixed in. If they could start her on medication for her brain, and impress on her how important it was to stay off drugs, she would be "in recovery" and thus able to live independently and maybe even get a job, and ready to be discharged from any hospital she was in.  I followed her for five years, while she was discharged dozens of times—although as I describe below, the system didn't make it easy for me to do that—and during that time I began to understand how profoundly wrong the system's perception was.

I know now that schizophrenia often doesn't show up till the late teens. Her older brother had a schizophrenic break the year before she did; it gradually became obvious to all of us that there was something about him that would make him hard to live with and very hard for him to get a job. But we didn't understand what it was or who could do anything about it.

D ran away from home one Christmas Eve and turned up months later in a group home for teenagers. Someone had diagnosed her with schizophrenia and prescribed Geodon for her. After a month she pronounced herself cured and quit taking it. She commuted to an adult school and at least occasionally took meth. She was kicked out of the group home because she hit someone else. For the next five years, except for brief periods in other group homes, she was either in locked facilities or homeless.

Once during this five-year odyssey, D was released from an emergency psychiatric hospital—she had been in and out of them (5150'd, as we call it in California) some 15 or 20 times—and we were walking around in the City. We went into Whole Foods (a high-end grocery store) so we could use the clean, spacious bathroom there (bathrooms in the Tenderloin are pretty scarce). Reminded by a display of dollar sodas, she told me an anecdote about voices.

The last time she was in that Whole Foods, she was thirsty and saw a similar pyramid of sodas. She remembered she had no money. But a voice told her, “It’s all right, I’ve got it, it’s paid for.” So, gratefully, she took a can from the pyramid, opened it, and took a sip. Quickly a security guard grabbed her, twisted her arm up behind her back, dragged her into a back room, threatened to call the cops, and told her never to come into the store again. Whoever had told her the soda was paid for was nowhere to be found.

Thus I began to understand that a mentally ill person cannot be blamed for what their voices tell them to do. Telling people them to take responsibility for their actions is no substitute for treating them or for keeping them safe.  Social worker Lynn Nanos, for example, understands this problem from eleven years of experience; she has dozens of anecdotes like this in her book Breakdown. It took me a couple of years to understand how totally illogical it is to make the sickest take the most responsibility.

During two horrible summers she was homeless (between short stays in emergency facilities) and slept in other people's tents or boats in several counties. She understood she had a government job where they paid her millions of dollars in secret bank accounts as long as she took meth every day. She had a case manager in our county—I was told she had "the highest level of care"—but to do anything for her they would have to find her, and as she had lost or sold her phone that did not happen.

Sometimes she would show up at my house to sleep, terribly thin and sunburned, talking about things I didn't understand and listening to people I couldn't see. She would sleep, but often she would bounce up again after a couple hours and say she had to go see or do something, and not come back for weeks. One time she stayed a couple days, and I was able to get her case worker to come over. He listened to her while she was lying in bed crying. D told him something that was hard for me to hear and hard to take in. She said that she had to take meth every day, at least a little bit, or her unborn baby would die.

I tried to explain to the people at the County that no weekly meeting with a social worker was going to be able to help D. I knew she could have no lasting hospital stay unless she was "a danger to herself or others,"but wasn't she a danger to her imaginary unborn baby? Surely the police would understand if they heard about this belief. Anyone would understand she had to be taken off the street, away from meth.

These two summers convinced that we were doing her no favor by giving her the chance to take meth. I saw her wandering around a park with only a shirt on—she told me it was a dress. I saw men following her around. She told me more than once that she was raped by strangers. She told me she washed out a meth pipe and injected the washings into herself.  Her neighbors in homeless encampments complained to me that she was in danger and I needed to "take her home."

D is taking medications in a locked inpatient facility now, and on meds, but her delusions continue and have gotten worse. Her illness has progressed. She hears voices through chips in her head, and talks to them and to real people at the same time. A voice tells her meth is good for her or for her current imaginary unborn baby. She is sure her doctor told her she needs meth to stay alive.

While she has these ideas, it is not kind to her to give her the chance to take meth, any more than it would be kind to give an Alzheimer's patient the chance to hike on the freeway, or a drunken person the keys to a jet airplane.

It took a long time for me to see justice this way, and many people working in the mental health system still resist this vision. They think anyone, even those in terrible danger, who does not choose sanity and sobriety has a right to reject both.


The System Does Not Want Me To Talk

HIPAA (the Health Information Portability and Accountability Act) limits the information health providers can release. Our third Point of Unity in the National Shattering Silence Coalition is HIPAA reform: "Clarify and improve HIPAA policies to include family rights and prevent harm that occurs when parents who provide care are shut out of the process."

Our system interprets HIPAA pretty narrowly. Parents can't get information without a HIPAA release. I've tried to visit her at hospitals where nobody was able to tell her whether she was there or not, and struggled to understand case workers who were trying to alert me to her medical state and location without breaching some rule. Clients are not encouraged to sign HIPAA releases, and D told me hospital staff have actually advised her not to, telling her she's more likely to be "locked up" if she does. For parents to get information, clients have to sign a new release for every change in case management, every new stay in a facility, and for every different department in the overseeing agency.

Reforming HIPAA, though crucial to our struggle, has been met with resistance.  Parents are up against a system whose beliefs, habits, bureaucratic interests, profit motives, and long-held idealism unite to keep parents out of the process. If the system didn't have HIPAA, it would have to invent it.

In my case, the system invented its own version of HIPAA when HIPAA wasn't strong enough to keep from me the information I wanted. Eventually, they quit accepting the HIPAA releases D signed even when she signed them. Her county conservator said that they could legally override these releases. I noticed that these withdrawals of permission happened when she was taken off Clozaril and I wanted to get her back on it (she does best on Clozaril).  On the last occasion they withheld information, they accused me of violating HIPAA for telling her past and future providers what was going on with her treatment and her symptoms. Parents of course can't violate HIPAA. Nevertheless, D's caretakers persuaded her that I was in danger of being in legal trouble if she didn't sign a document cutting off information to me. After she signed that document, she signed another HIPAA release; but they ignore that release.


Why Do They Want Me to Keep Silent?

It's probably complicated. They want you to keep silent about what's happening with your loved one. It’s so much easier for everyone—except for you and your loved one.

I can understand that they don't want to be held accountable. No one working in the system wants to be blamed for the totality of disasters that happen daily. They took these jobs to help people, not to take the blame for a broken system and its broken parts.  Unfortunately the result is that no part can be blamed and no one has to be accountable.

And many people working in the system seem to want to believe that everyone can recover with only voluntary measures. Workers are immersed in their jobs and find it hard to perceive a truth that is dissonant and makes them uncomfortable, even miserable. That some clients don't get better in weeks or months, or ever, and make horrifying, deadly decisions:  no one wants to hear that.

A highly respected patients' rights advocate advised me, during this furor about HIPAA releases, not to share D's story without her involvement.

The advocate said:
"It is of serious concern to everyone involved in D’s recovery that her private and personal information has been shared far and wide with many many people who have no business hearing about D’s illness and her efforts to achieve meaningful recovery."

And again, she said:
"Maybe if you told D why you feel it important for her recovery story to be told to certain members of the mental health community, she would feel it is empowering to be consciously involved in advocacy efforts. You could help her have a voice, and she would know what is being said about her. To do that would be respectful of her constitutional right to privacy and communicate to her that she is in charge of her life and responsible for her recovery. Can you envision how this could achieve your goals? Can you see how positive and respectful this approach could be?"

I can see this.  I wish, I wish, it could work this way.  If she could take responsibility for her recovery, that would be wonderful. If she could overcome both her illness and her addiction, and help me write about it, that would be ideal.  But if she takes responsibility for her recovery … doesn’t that mean she would also take responsibility for her disease? The idea horrifies me. Should she take responsibility for the effects of leaving her disease untreated, or not treating it the best way?

I've decided the most important thing is to keep her alive. Her life is more important than her privacy.


I Talk to Save Her Life

I talk to the public at hearings about mental health policy, and I send emails to other people involved in her care, to save her life. I don’t blame her for being mentally ill or using drugs, and nobody who stigmatizes her for this fully understands her situation. It’s not her fault she has a brain illness that has gone untreated for many months at a time. I believe I have gotten her another couple of years of life by speaking out about her situation and making clear to people that the danger she is in is not her fault. 

It does her no good to keep her illness and addiction a secret. I’m afraid that the worst thing that could happen to her—still a likely outcome—is that she will be on the street again, helpless, with no one knowing where she is or how to get her back into treatment, or in jail. Protecting her from rape, from injecting bad drugs, from AIDS, from violent interactions with police and others, and from incarceration that would traumatize and stigmatize her even more seems way more important than keeping her situation a secret. And in fact, when she is on the street, she gets better help from peers, police, and the system alike if they know about her mental illness.



I read that last New Years’ Eve, the body of Karina Banta, a woman just D’s age, was found in our county's landfill, having been dumped there by a trash truck from a transfer station not far from my house. Should the San Francisco Chronicle have kept it a secret that Karina had been homeless, mentally ill, and a drug abuser? Not at all; that information is part of her story and it helps the world to understand the danger our children are in.



Many, many parents of the seriously mentally ill tell people about the violence and tragedy their family has suffered. They do that to get help for their children, and even when that help comes too late to save their own child’s life, they do it to help others. See, for example, Dede Ranahan’s blog Sooner than Tomorrow, where parents tell their stories of seriously mentally ill loved ones who have killed other people or mutilated themselves. They tell these stories to save lives.



 Khadeeja Morse, the mother of Mikese Morse, who ran over two bicycle riders in Florida in June 2018, has been telling the public the specifics about her son’s illness—to save him from execution. If she had not gone to reporters, to Facebook, and to every official she could find, with a wealth of detail, he would be facing the death penalty as a murderer. Instead, she managed to persuade the state prosecutor and the Sheriff that Mikese was not responsible for his actions and needed treatment. She was right to talk about him. She got him a chance at life.



I need to tell D’s story BEFORE she dies or gets involved in violence that sends her to the criminal justice system.

Sometimes, when you read a news story about a mass murder, parents do speak up, in the hope that people are willing to hear and put together the pieces. They say the person was "struggling with mental illness," they were "discharged with no services," they "fell between the cracks." We family members with firsthand knowledge can break this code so easily.  Others will break the code, if we keep talking.

We Have a Chance to Change Things if We Keep Talking

The proponents of the civil rights of all mentally ill have campaigned sincerely for decades and won many victories large and small.  Sincere passion drives the patients’ rights advocate I quoted above. The civil rights campaign, however, has overshot to the point where the system would like to pretend that mental illness doesn't exist and that little if any involuntary treatment or containment is ever needed. The passion for rights was real, and now it is misdirected and confounded with all sorts of bureaucratic inertia. But I think we have a chance to direct passion towards survival, treatment, and protection for our loved ones, if we can make people see what we see.

"What would happen if one woman told the truth about her life?
The world would split open." - Poet Muriel Rukeyser