A Digital Remedy–Or a Digital Intrusion?

If neurochemistry can be thought to have a cruel side, it is evidenced in anosognosia. This loathsome side-effect of severe mental illness accompanies about fifty percent of all cases. As the link explains, it renders its victims incapable of understanding that they are afflicted, and prompts them to strongly resist doctors’ efforts to medicate them and, in cases of active psychosis, commit them to hospital treatment.

My family is acquainted with anosognosia and its lethal power.

Kevin Powers

Our younger son Kevin almost certainly was a victim of this ride-along predator, and it cost him his life. He accepted psychiatric treatment and medications for most of the three years after he was diagnosed with schizophrenia, yet never acknowledged the disease itself, insisting that it was merely a “condition.” Near the end, after he had been re-diagnosed with schizoaffective disorder he renounced medication of any kind. He hid the pills that we continued to insist he take, and committed suicide just days before his twenty-first birthday.

Kevin’s older brother Dean, stricken a few years after his sibling’s death, has been more fortunate. An enlightened psychiatrist observed Dean’s own resistance to intervention, and turned it to my son’s advantage: In brief, “Report to a clinician for a monthly antipsychotic injection, or be legally hospitalized when the inevitable psychosis erupts.” Dean has taken this carrot/stick choice seriously, and has significantly improved from his psychotic depths.

Abilify® (aripiprazole) 10mg

Now comes medical science (via the pharmaceutical industry) with a product designed to defeat anosognosia. The Food and Drug Administration has approved the digital modification of a popular oral medication, Abilify® (Aripiprazole, manufactured by Bristol-Myers Squibb). As explained in this  New York Times story, each pill will be equipped with a digitalized sensor that can transmit electronic data to doctors and family members, reporting whether and when the patient took the medication.

The device will surely be welcomed by parents who have exhausted themselves begging in vain for their children to accept professional intervention, and watched helplessly as their children have refused, and deteriorated into deep psychosis, and sometimes, as with Kevin, death.

My own instinct (naturally) is to celebrate this promising solution to a scourge that would be called “evil” if there were sentience behind it. Yet reason tells me that celebration is premature.

An obvious roadblock to the product’s success is that those who most need it may not take it. If anosognosia leads SMI sufferers to resist acknowledging their illness, why would it not lead them to reject a medication that treats a “nonexistent” illness? (It should be noted that the digitalized medication will also be marketed to older sufferers of various discomforts who tend to forget taking their meds.)

Another barrier is popular distrust–legitimate distrust, to an overwhelming extent–of Big Pharma itself. The distrust has been earned.

Bristol-Myers Squibb is a part of a massive industry that has recently been rated as the second-most hated in America. (The top pariah varies from website to website.  The far-flung electronic communications industry is often the No. 1 contender, or nolo contenderer.) Pharmaceutical companies raked in a composite global revenue of more than one trillion dollars in 2014. This ongoing bonanza has made them virtually impervious to the restraints of the law. In 2012, for instance, GlaxoSmithKline paid the U.S. Department of Justice three billion dollars in a false-claims settlement, the largest in the long and bloated history of penalties assessed Big Pharma. Bristol-Myers Squibb’s history of producing Abilify® has been tainted with lawsuits: the watchdog organization drugwatch reports that as of September, 365 actions were pending against the company. Most of them charged that Abilify’s® side-effects include compulsive tendencies toward gambling, eating, shopping and sex.

Big Pharma’s excesses are making headline news, and disrupting America’s social fabric, to this very day. The October 30 issue of the New Yorker carries a bold and searing investigative essay by the writer Patrick Radden Keefe. Keefe’s immersive journalism meticulously lays out the chain of greed, recklessness and “ruthless marketing” that led to our present opioid crisis. Keefe trains his sharp lens on the family of multi-generational philanthropists and drug entrepreneurs, the Sackler family, private owners of Purdue Pharma, which has built them a net worth of thirteen billion dollars, and which is responsible for the prescription painkiller OxyContin. OxyContin’s active ingredient, as most people now know (many of them through catastrophic experience) is oxycodone, a chemical similar to heroin.

Oxycodone

Keefe reports that “Since 1999, two hundred thousand Americans have died from overdoses related to OxyContin and other prescription opioids.”

Chapter 15, “Antipsychotics,” in my book NO ONE CARES ABOUT CRAZY PEOPLE, covers the era of Big Pharma from the introduction of Thorazine in 1954 through our present time. The saga is one of proliferating medications, global expansion of companies, almost inconceivable profits, false claims, hidden or downplayed side-effects, and a corporate culture whose manifest amorality was damningly characterized by a former insider, quoted in the chapter, as fulfilling “the criteria for crime in U.S. law.”

Given the details that I have amassed, in this essay and in NO ONE CARES, covering the nearly 70 years of depredations that make up the worst of Big Pharma, it may seem surprising that I do not, out of hand, dismiss the introduction of digitalized Abilify. And the entire universe of antipsychotic pharmaceuticals along with it.

The reason I do not is at once simple and complex: many of them work. Or work for some patients, if not others. Or work in spite of their problematic side effects. Or work until they don’t work. Our vexed universe of care for the seriously mentally ill, even at its best, remains enshrouded in mystery, incomplete science, and human failing.

I believe that until the day that an infallible cure arrives, the advocates of intervention (including conditional support for new products such as digital Abilify, and strong support for laws that ease intervention’s barriers) must acknowledge that we take our stands in a world of risks. Some of the risks we advocate might result in more harm than good, or in harm, period.

But I also believe this: that the biggest risk of all is doing nothing. For this way lies madness.

Update on Jack Greene

Greene, whose impending Nov. 9 execution I condemned in my previous post, is likely suffering from one of serious mental illness’s most insidious and common “companion” affflictions, anosognosia. (The term is Greek for lack of insight, and is explained here: http://www.treatmentadvocacycenter.org/key-issues/anosognosia.) I have seen anosognosia at work in both my schizophrenic sons, and can attest that its victims can make very convincing cases that they are “normal”–because that is what they believe. Greene appears to be another example.

The violent mentally ill comprise a small percentage of those afflicted. Yet they are among the most feared and despised of society’s scourges, and many people mistakenly equate schizophrenia with homicidal tendencies. http://depts.washington.edu/mhreport/facts_violence.php Very often, they have descended into a violent state because their brain disease has gone unmedicated, and thus worsened over time.

The Arkansas prison administrators who may soon exercise their power to kill Jack Greene appear to be equally clueless about the general nature of brain diseases such as Greene’s. They are physical genetic flaws that cannot be cured. Their effects can be modified by proper medication. Untreated, their victims lose all power to understand reality or control their actions.

If the November 9 execution goes forward, Jack Greene will die, but the real culprit–the disease that destroyed his reason–will live on, doing unspeakable human damage. It will continue to operate under the cloud of ignorance that still obscures justice for the mentally ill.

Take Action

Please watch the video below to learn more about Mr. Greene and share his story with friends.

Click here to sign the petition to grant mercy to Jack Greene initiated by the Arkansas Coalition to Abolish the Death Penalty.

Arkansas poised to execute man amid fight over mental health
His lawyers want doctors to have a greater say in determining his mental competency.
In this on Oct. 4, 2017, frame grab from video, Arkansas death row inmate Jack Greene appears before the state parole board at a prison in Varner, Ark. Greene is scheduled to die Nov. 9, 2017, but his lawyers are arguing that he is severely mentally
In this on Oct. 4, 2017, frame grab from video, Arkansas death row inmate Jack Greene appears before the state parole board at a prison in Varner, Ark. Greene is scheduled to die Nov. 9, 2017, but his lawyers are arguing that he is severely mentally

via ABC News

Jack Greene’s lawyers say he’s severely mentally ill. The Arkansas death row inmate says they’re lying.

As Greene approaches a Nov. 9 execution date, his lawyers are raising questions about who should determine his mental competency. Arkansas gives considerable weight to its prison director’s opinion in deciding whether a condemned inmate has the mental capacity to understand his execution; Greene’s lawyers want doctors to have a greater say.

“The system is really quite antiquated,” John Williams, an attorney for Greene, said in an interview. “(Prison director) Wendy Kelley is an arm of the state. She doesn’t have the expertise to make that determination.”

Greene was convicted for the 1991 killing Sidney Jethro Burnett after Burnett and his wife accused Greene of arson. At least one court this week will take up Greene’s case.

The inmate hasn’t always made it easy for his attorneys. While pleading for clemency, he told the Arkansas Parole Board this month that his lawyers are wrong to call him “delusional” and that courts have routinely found him competent. He also told the board, “I knew what I was doing to him,” when he tortured Burnett for an hour before shooting him. When a doctor testified that Greene has done headstands during examinations and even in courtrooms, Greene told the panel that he does yoga to remain “functional.”

Williams says the seemingly lucid moments mask severe mental illness.

“A lot of people who are mentally ill don’t think they’re mentally ill,” the lawyer said.

The case has drawn the attention of both the American Bar Association and a collection of 28 mental health professionals, who wrote to Gov. Asa Hutchinson saying it would be “morally and ethically wrong” to execute Greene.

“Mr. Greene’s illness manifests itself in extreme physical contortions, in self-mutilation, and in delusional beliefs he holds about a conspiracy against him between his attorneys and prison officials,” the mental health professionals wrote.

Greene stood throughout his Oct. 4 appearance before the Parole Board, fidgeting and fumbling through documents that, he says, promised him a transfer to his home state North Carolina, where authorities say he killed a brother days before killing Burnett. Bloodied, rolled up strands of tissue stuck out of both ears and his left nostril; his lawyers say that is a symptom of Greene’s mental illness.

“If I could go back to North Carolina and get medical treatment, that would be great, but if not, let’s come on with this execution,” he told the panel.

Williams says Greene believes he’s being executed because he uncovered a purported (and to Greene, successful) conspiracy among guards and lawyers to torture the inmate and dissolve his central nervous system and spinal column.

“He thinks that the Department of Correction cannot send him back to North Carolina because he knows too much about what has happened to him in prison,” Williams said. “They won’t send him back to North Carolina, so they have to execute him.”

Baloney, state lawyers say. North Carolina sent Greene to Arkansas for his murder trial on the condition that he would be returned if he received any sentence other than the death penalty. Greene knows a transfer is a lifeline, Assistant Attorney General Kathryn Henry said.

The governor said Friday that he was still reviewing Greene’s file after Parole Board members recommended that he not spare the inmate’s life.

Greene’s execution would be Arkansas’ first since it put four men to death in an eight-day period in April.

http://abcnews.go.com/US/wireStory/arkansas-poised-execute-man-amid-fight-mental-health-50794313

The (Continuing) Education of a White Writer Regarding Black Americans and Mental Illness

This post is for two of the best women I know, the New York actor and activist Madeline McCray and her close friend Terrie M. Williams, the author of BLACK PAIN: IT JUST LOOKS LIKE WE’RE NOT HURTING.  

Terrie Williams and Madeline McCray

Madeline and Terrie, you tried to put me wise to the special challenges of African-Americans who suffer from mental illness. You reached out to me as I began research on NO ONE CARES ABOUT CRAZY PEOPLE.

You provided me with sources. You tried to educate me. I promised you that I would look deeply into this topic in my book. But in the end, I did not look deeply enough.

Recognition of this truth arrived, appropriately enough, on Mental Health Day, October 10. It arrived in the form of a young woman in Cleveland, an African-American service-staff employee at the Intercontinental Hotel. It arrived just minutes after I’d finished addressing an exemplary civic group on—well, on the topic of education. Education about mental illness. How important this kind of education is.

(from left) David E. Weiss, board chairman; Honoree Fleming; Ron Powers; Elizabeth Newman, president and CEO at The Centers for Families and Children Benefit Luncheon 2017.

It took a three-minute conversation with this soft-spoken young woman to make me realize that my own education has been incomplete.

This is a rich irony—or a well-deserved comeuppance, depending on your point of view. I wrote NO ONE CARES essentially as an effort at education. After schizophrenia invaded my family and attacked both my sons, triggering the suicide of one of them, my wife and I realized that we’d become citizens of a “sub-nation”: the largely opaque nation of the afflicted and their families. Years later, when I recovered my willpower, I decided to write the book as an attempt to widen public understanding (and my own) about the nature and the reach of serious mental illness. That, and to illuminate the gross deficiencies in the American systems of mental health-care, criminal justice, and political willpower in addressing the problem.

As I’d hoped, writing the book educated me—but incompletely, as I now understand.

It is not as though the book ignores the particular ordeal of mentally ill black Americans. At least the public symptoms of that ordeal. It covers the epidemic of fatal shootings, by police, of unarmed and psychotic black men on the street. It portrays the overcrowding of the nation’s jails by juveniles, mostly black, who have been charged with crimes but not yet tried; and the violence visited on them by wardens and guards.

All of this is important. Yet in merely evoking these familiar abuses, I failed to cross an elusive border: the border that defines the daily realities of a sub-nation within a sub-nation. The lives of African-Americans struggling with mental illness amounts to unknown territory—unknown, at least, to most white Americans, of which I am one.

Ron Powers – keynote speaker at The Centers for Families and Children Annual Benefit Luncheon

I was ushered across that border in Cleveland on Mental Health Day.

My guide, the young service staff member, approached me just minutes after I had finished speaking at the annual luncheon of the Centers for Families and Children at the Intercontinental. (I am withholding her name. It’s a sad possibility that in these hair-trigger times, her employment could be jeopardized by the very fact that she spoke up to me about a racially charged public issue.)

Woodlawn Avenue, East Cleveland

The Centers deserves a moment of illumination here. It is a sterling civic institution. A nonprofit with an annual budget of $55 million, it reaches out to the poor, the hungry, the under-educated, the sick, and the troubled—some twenty-five thousand clients—in a city striving to overcome chronic post-industrial poverty entrenched racial tensions. The racial stress is burned into the city’s history along lines of segregation in its housing patterns: most of its black and poor population is concentrated in the near East Side, and most of its white population farther west. Cleveland’s incidents of fatal police gunplay in recent years, highlighted by the shooting of the 12-year-old Tamir Rice in 2014, have deepened black Cleveland’s distrust, bordering on paranoia, toward the mostly white police department.

David E. Weiss

Amidst these overwhelming challenges of poverty and racial unease, the Centers for Families and Children persists as a national model of enlightened civic service and hope. Its board chairman, the lawyer and businessman David E. Weiss, ranks among the most socially engaged civic leaders in the country. Its new director, Elizabeth Newman, has re-ignited its six hundred volunteers with her own passionate sense of mission: to help people find job opportunities and early-education conduits for their children, provide food for hungry families, dispatch pharmacists to households to help manage nutrition and medications, find treatment for substance abuse, and summon emergency services in crisis situations.

And to co-ordinate intervention and help in the crises of the mentally ill. Elizabeth Newman explained this cornerstone service to me in detail:

Elizabeth Newman

“The Centers is equipped to support people with serious mental illness, this skill set actually sets us apart in the community. We routinely assist people living with schizophrenia. We have psychiatrists on staff, in addition to relationships with the local/regional hospital systems and emergency rooms. In terms of onset of psychosis, we are outpatient providers but work in partnership with inpatient providers, so it really depends on the level of severity.  Another agency in town runs the mobile crisis unit, but we receive referrals and connections to clients directly from that unit.”

Which brings me (in my round-about way) to the topic of this blog.

Ron Powers

As mentioned, I had completed my remarks and was standing amidst the departing luncheon attendees when she emerged from the mix of people. She wore the brown uniform of the hotel’s service corps, and her manner was hesitant; yet it was clear that she had something she wanted to say.

What she said was, “Thank you for speaking about schizophrenia.”

I sensed the urgency behind this polite comment and asked her: “Is there a history in your family?”

She hesitated for a moment, as if trying to decide whether she could trust me with an answer, and then:

“My mother. And my brother.”

There is no way to prepare for a response like this, no matter how much you expect it, no matter how often it comes. One rule of thumb is to avoid “condolences.”

I asked her the only questions that seem fitting, and necessary:

“Are they getting treatment? Are they on medications?”

She smiled just a little before answering; and the smile should have told me everything I needed to know. But she spelled it out anyway.

“Black folks don’t like to get treatment. Black folks see it as a white man’s disease.”

While I was digesting this, she added: “Black men don’t like to talk about mental illness. They see it as a sign of weakness.”

And then, as if recognizing the need to explain the obvious to a blockhead (accurate, I suppose, in this instance): “So, no. They aren’t getting any treatment.”

And there it was: a key to the inner realities of a sub-sub-nation. The culturally learned set of attitudes that makes it all the harder for doctors and psychiatrists to intervene in the mental-illness crises of African-Americans. African-American men in particular, who routinely suffer violations of their self-respect, their safety, their very humanity, at the hands (and guns) of those who view them as inherently alien, dangerous, unworthy of inclusion in society.

Which, when you think about it, is exactly the same way that many people view the mentally ill in general.

 

I left the Intercontinental Hotel in Cleveland as the educated educator. I thought of my friends Madeline McCray and Terrie Williams, and about the exasperation they must have felt at my failure to cross that border. Felt silently, without rebuke, in the way many African-Americans experience the myopia of their white friends.

Back home, I sought to verify the viewpoint of the young service-worker at the Intercontinental in Cleveland. Below are some samples of what I came up with. There are more, many more, as a Google search of “African Americans mental illness” will show.

–That African Americans are 20 percent more likely to experience serious mental health problems than the general population, owing in part to the exceptional stress they experience just living their lives. The problems include major depression, attention deficit hyperactivity disorder, recourse to suicide, and post-traumatic stress disorder (this last because African Americans are especially likely to be victims of violent crime).

–That many black Americans misunderstand what a mental health condition is and don’t talk about it. Many thus believe that a mental health condition is a personal weakness punishment from God.

–That stigma—which knows no color lines—triggers especial reluctance among African Americans to discuss mental health issues and seek treatment.

–That a pervasive deficit of information—education—causes many African Americans to have trouble recognizing the symptoms of mental illness and to underestimating its dangers. Some may think of depression as “the blues” “or something to snap out of.”

(The above examples are taken from https://www.nami.org/Find-Support/Diverse-Communities/African-Americans)

–That black Americans’ distrust of doctors has some factual justification: Blacks are “over-diagnosed with schizophrenia, frequently misunderstood by their psychiatrists, and largely disenfranchised,” in the opinion of William B. Lawson, the distinguished African-American professor and chair of psychiatry at the Howard University College of Medicine. (https://www.medscape.com/viewarticle/768391#vp_2)

 

A Closing Thought

This has been far from an easy blog entry for me to write. No one likes to own up to failures of understanding, especially in the fraught arena of of racial relations. As with NO ONE CARES ABOUT CRAZY PEOPLE itself, I at first resisted writing it at all. Then I decided I had to write it because it was the truth. I hope that it is read with an understanding that writers are often fallible—just like ordinary people.

________

The full recording of the interview with Elizabeth Newman and Ron Powers is available here: http://www.ideastream.org/programs/sound-of-ideas/finding-the-cure-for-aids-book-no-one-cares-about-crazy-people.

Additional coverage of the Luncheon in The Plain Dealer, the daily newspaper for Cleveland: http://www.cleveland.com/healthfit/index.ssf/2017/10/putting_a_renewed_focus_on_men.html

Solitary Confinement: Cries for Help and Voices of Despair from Victims’ Mothers

This blog has lately been focusing on solitary confinement of jail and prison inmates as an intolerable practice in our criminal-justice system. Solitary confinement is inhumane, unproductive as a “corrections” technique, and psychologically destructive. It must be abolished.

My mission is to encourage others who feel this way to petition their congressmen and women to initiate repeal—and to identify and support the several organizations who are already working toward this.

 

I recognize the odds against my voice making a difference. It is all too easy for anyone who’s not personally connected to a victim of “the hole” to utter tsk-tsk noises at a safe removal from Ground Zero. Neither of my schizophrenic sons was ever arrested and threatened with this living entombment. My wife and I have never had to watch helplessly as either of our boys disappeared into one of the jails around the country where this barbaric practice continues unchecked; where the mostly-young and often mentally ill inmates undergo tortures of the damned, and their mothers1 The reader will note that I write, “mothers.” The almost complete absence of fathers from this discussion or from any conversation on their offsprings’ mental illness is a phenomenon that needs further examination. And Pete Early, I am NOT looking at you! agonize while pleading in vain for justice, or at least mercy.

 

Therefore:

 

In this blog, we are going to eliminate the tsk-tsking middleman—me—and hear from a sampling of mothers at Ground Zero whom I know through correspondence. The rawness of their outrage and grief has given them a truth-telling eloquence that far surpasses anything I’ve written or will write. They speak for thousands upon thousands of similarly violated families who cannot or will not seek to make their stories public.  

 

I have edited their emails to me only lightly, for compression and clarity. I have included the identities of two mothers, who have given me their permission. One is Jennifer Tirkot of Coral Gables, Florida. The other is Kimberlee Cooper West, of Fruitport, Michigan.

 

We will begin with some brief entries from a blog kept over several years on a private site by Jennifer Tirkot. Ms. Tirkot’s epic struggle with the state’s corrections system on behalf of her brain-disordered son John far exceed the damage he has endured during several stretches of solitary. I am planning to devote a future blog to her nearly unthinkable plight. Pete Early has also written about Ms. Tirkot: http://www.peteearley.com/2017/02/06/mother-repeatedly-tries-to-get-her-psychotic-son-help-instead-he-beats-her-and-is-arrested-twice/

 

Entry No. 1: I wrote my son’s story to have him taken out of solitary confinement and transferred to the state psychiatric hospital. This is his 2nd incarceration in 2 years for having a brain disorder. The last time he was incarcerated for hitting a police officer and EMT worker. They were Baker Acting him for his psychosis when he hit them. They transferred him to jail and locked him away in solitary confinement for 10 months. I had no choice but to share my story with the world. Pete Earley is publishing it. My son spent last Christmas and this Christmas in solitary confinement for having a brain disorder.  That’s what we do now.  We lock them in solitary confinement in jails/prisons and refuse to medicate them. 

Entry No. 2: I would like to sue the State of Florida for over wait times for competency restoration. My son suffers from schizophrenia, schizoaffective disorder, personality disorder, bipolar, depression, and anxiety. He’s been in jail for over 7 months without medication.

Entry No. 3: He’s severely depressed and they are not treating his depression. Plus, his hands are all scared and his knuckles are red. I asked him what happened to his hands and he said he’s been hitting his cell wall to punish himself for hitting the patient. After 72 days in solitary confinement, he developed Bell’s Palsy, where the left side of his face became paralyzed. He refused medication for it because he said God was punishing him for hitting the patient. The left side of his face is now paralyzed. He’s been without medication to treat his schizophrenia, schizoaffective disorder, personality disorder, bipolar, depression, and anxiety for over 7 months. I’ve been told by Elaine, head of DCF Forensic Hospitals, they can hold him incompetent without medication up to five years.

Entry No. 4 (dated July 21 of this year): Today is my son’s birthday…he’s in solitary confinement for having a brain disorder and the State of Florida didn’t take my “Do Not Release” letter seriously sent to Brevard County Circles of Care psychiatric care unit. I can never imagine crying anymore..but…I cry in my sleep, I cry when I wake up, and when I think I can’t cry anymore…I can’t stop crying…Happy Birthday to my loving son…

 

 

This mother, whose tragedy I mention in NO ONE CARES ABOUT CRAZY PEOPLE, posted briefly, and searingly, on a private site:

October 22, 2014 Josh died alone in a jail cell. My 39-year-old son killed himself today. Josh hung himself in a solitary confinement cell in a prison south of St. Louis, Missouri. He died alone, afraid, and powerless. Josh needed help. Instead, he got punishment. Like all mothers, I had dreams for my children — dreams that didn’t include mental illness or prison.

 

I have written before of the nearly inhuman outrages, including solitary confinement, visited on Kimberlee Cooper West’s mentally ill adopted son Tyler, who still awaits trial on a minor charge after being incarcerated last February (!) Kimberlee has bravely encouraged me to tell Tyler’s story, with identification, and she has plunged into research regarding the lingering psychic damage of solitary confinement, which I will draw upon in a future blog.

 

Here is Kimberlee’s latest message to me:

 

Hello Ron. We as a society have to look at Solitary Confinement honestly. The studies have shown high recidivism rates. The psychological effects last a life time. Is that a healthy thing for society?  During solitary confinement, Ty called home dozens of times a day. He was screaming, crying, begging, for our help. He asked what is going on?  Please come pick him up. By this point he was further into his psychosis. He did not understand why he was there. He was suicidal, banging his head against the wall. No one intervened. He did not understand what was happening. There were times they forgot about him. Times he was not fed.

 

Four separate times our son was sent to solitary confinement. It was not because he was a bad kid. He has a serious mental disorder and is also autistic. The jail staff did not know what to do with him. He needed a hospital. They stopped all his antipsychotics cold turkey. This can lead to convulsions, And death. The medication insert warns “Do not stop medication abruptly.” Ty said “My insides and body are uncontrollably shaking.” He said “It feels like I have the flu. It feels like I’m dying. Mommy, I can’t breathe in here.” He has moderate COPD, from his reflux and dysphagia.

 

Why do they put people in solitary with breathing problems? Health problems are not considered. If they live or die, no one cares about inmates. The Jails are short on staff, so they forget about these people. They use their own formulary of a cheaper antipsychotic.  They waited many days before prescribing antipsychotics. CMH [Community Mental Health] decides when they are released. Social workers and case managers, are not doctors. CMH is not there weekends or holidays. This prolongs an inmate’s time in solitary. 

 

Muskegon County Jail has a doctor only on Fridays. They save money by not using doctors. Nurses take the place of doctors. So many inmates will confess to anything to end solitary confinement. Guilty or innocent, it does not matter. Research has shown that autistic people do not benefit from solitary confinement. Yet I know several who are in solitary. It can cause lifelong problems for the autistic. Our son has the maturity of a 12 year old. He has never hurt anyone. Now he has trauma to add to his list of disabilities. Jail staff do not consider these mitigating circumstances. There still are no laws on the books to protect our autistic and mentally ill kids. Ty has experienced delusions and has been in a fog.

 

Solitary accelerated our son’s mental illness. From there on we were on a downward spiral. . . Our independent forensic psychologist has described Ty as in acute turmoil, in a hypomanic state with major depression and diminished coping mechanisms. . . 

 

[The idea of solitary is] to “teach a lesson.” That I challenge. How does that work if someone has an adolescent brain, is mentally unstable or withdrawing from drugs? . . . If I locked my teenage son in his room and tased him I would go to jail. If it is not o.k. for me to do it, then why can they? . . .

 

We unconsciously assume that those thrown into solitary confinement are exclusively men. This letter, from the mother of an adopted daughter, attests otherwise:

 

[Our daughter] has been in solitary confinement several times in NYC and another urban area. One time, she was merely transferred and they automatically put her in solitary for 3 weeks. We got to visit her once for 1 hour. We drove 5 hours to get there. Most depressing visit I can recall. All metal, no touching, no hugging or human tenderness allowed.

When people do not “jump” as requested, they put you in solitary to “teach you a lesson,” as they have told her many times. You get 1 free hour per day, to shower, but that is it. No calls either. Just letters. That is the only form of communication. Another interesting fact is that many, many, many prisoners are adoptees. Many of them have mental health issues, but instead of dealing with that outside the system, thy are remanded to jail/prison. [Our daughter] spent over 2 years in federal prison and is now in a county jail, awaiting sentencing. She is hoping to get out in a month or so. But then she will serve 1.5-3 years on federal probation. If that gets violated, they frequently use it as a means to “throw you” back into prison.

The criminal “injustice” system is a travesty in its present state. I say, “tear it apart and start all over again,” building a system that treats those with medical and/or mental health issues as human beings first, and criminals last. Criminals are not born. They merely took a wrong turn. I do not believe they should be punished for life and/or altered immeasurably. Climbing out of the “hole” society has created for troubled souls is fraught with hazards, roadblocks, and generally impassable terrain.

 

I will be posting more parents’ testimonies regarding solitary confinement as time goes on. I welcome any repostings of this that readers care to make.

 

Thank you, Deb Fabos, for posting this

Civil Rights Groups File Suit on Behalf of Man Intentionally Denied Mental Health Treatment in Jail, Man Was Abused by Tangipahoa Prison Officials

via ACLU.org

FOR IMMEDIATE RELEASE
CONTACT: Ronald K. Lospennato, Advocacy Center 504-208-4679

NEW ORLEANS – Two civil rights organizations, the Advocacy Center and the ACLU of Louisiana, joined forces to file a lawsuit today on behalf of Dennis Bargher, who, while suffering from schizophrenia and other severe mental illnesses, was held at Tangipahoa Parish Jail (TPJ) for nearly two years without treatment.  The suit was filed in the United States District Court for the Eastern District of Louisiana.

TPJ officials knew that Mr. Bargher was severely mentally ill, that a court had ordered his treatment with prescription medications, and that without treatment, Bargher would quickly descend into psychosis. Despite that, they refused to treat him, held him in solitary confinement for weeks and months at a time, and denied him food until he had lost nearly half his body weight. Bargher’s abuse at the hands of jail officials continued for almost two years until late 2011, when he was discovered – psychotic, emaciated and enfeebled – by civil rights groups and transferred to a different facility.

Miranda Tait, an attorney for the Advocacy Center said “prison conditions are very hard on inmates with mental illness. Conditions of overcrowding, violence, lack of privacy, lack of meaningful activities, isolation from friends and family, and uncertainty about life after prison affect all inmates. These conditions are especially difficult for people with mental illness. The intentional withholding of medical treatment, with callous disregard for the inmate’s medical needs, is tantamount to torture”

According to Marjorie Esman, Executive Director of the ACLU of Louisiana, “Under the Constitution, prisons are obligated to provide inmates with adequate medical care, including mental health care. Officials cannot abuse or neglect inmates, deny prisoners essential treatment or allow offenders to physically and mentally waste away simply out of contempt or because they don’t understand the disease.”

With few psychiatric services available to the public, people with mental illness are increasingly funneled into a criminal justice system that is ill-equipped to address their treatment needs.  Hundreds of thousands of men and women in U.S. jails and prisons suffer from serious mental illnesses such as schizophrenia, bipolar disorder, and major depression. “It’s past time for us to provide adequate care for those with illnesses,” continued Esman. “Dennis Barger was wrongly denied that care, and suffered greatly as a result.” Representing Dennis Bargher are Miranda Tait and Ronald Lospennato of the Advocacy Center, ACLU of Louisiana Senior Staff Attorney Justin Harrison, and ACLU Cooperating Attorney Ron Wilson.

The Slaughter Goes On

Several weeks ago, I suspended this blog, largely out of lingering psychic exhaustion after the completion and publication of NO ONE CARES ABOUT CRAZY PEOPLE.

Since then, I have noticed that the problems I covered in the book have not been suspended. The ones most troubling to me include the appalling indifference–by public policymakers and by the society that elects them–toward the ongoing obscenity of throwing mentally ill young people into county jails, where many are deprived of essential medication, beaten by guards and inmates, and thrown senselessly into solitary confinement, a form of torture on a par with waterboarding. This obscenity is largely a factor of the massive bed shortages in our vanishing psychiatric hospitals–juicy targets for budget-cutting legislatures, and a problem that has not been adequately addressed since the catastrophe of deinstitutionalization.

Another problem–one that loomed suddenly while the book was in production, with the election of Donald Trump and the inexplicable wave of cruelty that has hardened amidst the Republican Congress, is the threat to the existence of Medicaid support for the seriously mentally ill along with many other categories of sufferers.

Yet another is the perceived softening of the National Alliance for Mental Illness–NAMI–in its outreach to the seriously mentally ill. The powerful activists Dj Jaffe, Janet Hayes (https://www.facebook.com/JanetHaysNOLA), Teresa Pasquini (https://www.facebook.com/teresa.pasquini.3), Lauren Rettagliatta (https://www.facebook.com/lauren.rettagliata), Mary Zdanowicz (https://www.facebook.com/profile.php?id=1296146654)  (so many determined women! So few men!) and the nonpareil blogger Pete Earley (http://www.peteearley.com/blog/) have commented on this with varying degrees of concern. The common criticism is that NAMI is pulling away from outreach toward victims of serious mental illness–incurable brain afflictions transmitted through the genes–and concentrating its resources, and its funding opportunities, on a “big tent” approach that emphasizes “mental wellness,” or “mental health.” The plight of these sufferers, most but not all of whom fall under Freud’s term, “the worried well,” deserve outreach. But that outreach is being supplied by several other organizations formed specifically to answer their needs.

I share others’ concern and outrage over all these issues. What disturbs me most acutely these days is a recent surge in the brutalization, often fatal, of mentally ill young men at the hands of police and prison guards. I append a few links to these atrocities below.

I believe that this brutalization, fed largely by the twin jail/hospital crises mentioned above, is a stain on our national character, and that we must mobilize a movement to reform it.

As some visitors to the blog know, I speak as the father of two schizophrenic sons, one of whom took his life in 2005, and one of whom lives on with us in a condition of stability if not recovery. As awful, and as enduringly heartbreaking, as their fates, each was spared the dehumanizing horrors of falling into the criminal-justice system. In my surviving son’s one encounter with the police, in our hometown of Castleton, Vermont, the officer acted with tact, humanity, and restraint. I feel that it is my mission–exhausted and often in despair as I am over these ongoing crises, to do what I can to ignite the conscience of Americans and those whom they elect to protect and enhance society, especially its most helpless citizens.

(Okay, full confession: I just re-read that last sentence, and it sounds pompous as hell. Sue me!)

Links

http://www.bostonglobe.com/metro/2017/07/15/his-parents-said-just-needed-sleep-swat-team-came-instead/1sTWdBw2MNqqFGCOUfLnHL/story.html?s_campaign=breakingnews%3Anewsletter

http://www.rgj.com/story/news/2017/05/03/released-video-depicts-fatal-struggle-washoe-jail/309046001/

https://www.hopexchangenonprofit.org/blog/our-minds-are-not-our-only-prison-where-is-the-social-justice-for-the-mentally-ill-when-far-too-many-are-coming-out-of-jail-in-body-bags-or-receiving-humane-treatment

http://www.wbrc.com/story/35819522/what-happened-to-jamie-lee-wallace#.WWJPUm5TXw8.facebook

https://tonic.vice.com/en_us/article/bj8gy4/the-prison-system-is-designed-to-ignore-mental-illness

Voices From the Sub-Universe

Today I introduce a new, occasional feature to my blog. Please see below:

Ron Powers

Voices from the Mental Illness Sub-Nation

Near the beginning of my recently published book about mental illness, “No One Cares About Crazy People,” I write: Too many of the mentally ill in our country live under conditions of atrocity.

I grew convinced of this over the three years of my research into schizophrenia and its related brain afflictions that include schizoaffective disorder and extreme bipolarity. My examples in the book cover the spectrum of atrocity: mis-diagnoses (often “drug overdose”) by doctors; judges who order young victims into jail instead of treatment centers; beatings, deprivation of medications, and the torture of solitary confinement behind bars; death on the streets from bullets fired by untrained police; the daily fog and helplessness of the untreated insane.

These and some other areas—arenas—pretty much covered it, I was convinced. The spectrum of atrocity suffered by the mentally ill in America.

I was wrong.

I had limited my investigations to the barbarities visited on the “crazy people” themselves. Only after the book’s publication in March did a companion realm swim into focus for me: the realm of ordinary people whose lot is to care for the afflicted. These include mothers, fathers, siblings and friends of the helplessly impaired thousands whom our social bureaucracies have neglected and rejected and crushed. In many ways, these family members are damaged and abject as the loved ones they seek in vain to rescue.

No one cares, to coin a phrase, about those who care about crazy people.

This realm rushed at me in emails to my Facebook page and to the blog I created that related to the book. It swelled up within certain websites that I, as a writer about mental illness, was invited to join. These sites are closed off to anyone but relatives of madpeople; an enforced set of agreements keeps their conversations private unless they grant specific permission.

The writers on these sites are almost exclusively mothers—a fact that in itself merits contemplation. Mostly middle-class, they span several income, educational and racial categories. They are seldom “natural” writers, yet no one could mistake what they have to say. They write with the rare pitch of truth-telling passion that James Agee memorably described as “the cruel radiance of what is.”

What they have in common is a collective story more urgent, more morally devastating, more viscerally real, than be expressed by the modes by which outsiders receive information about mental healthcare: statistics and news items and policy statements and political press releases, delivered in detached, passionless prose.

Today, this blog commences an occasional compilation of these mothers’ voices (and those of other relatives as they are available). I have obtained permission from each source quoted, and have withheld identities, although some gave permission for that as well.

My hope here is twofold. One is that the reader will feel the same emotions as I have: shock and indignation that such chaos and neglect exist in America’s mental health-care systems, causing such a vast archipelago of misery and terror. The other is that these voices will encourage others to throw off fears of stigma and shame and begin hurling their own voices, their own testimonies, into the world. Only by putting human faces and voices upon the statistical morass of this ongoing atrocity can we hope to begin decisive, lasting reform.

 

We will begin with an example of the commonplace indifference and buck-passing at the community level that makes a mockery of the very phrase “mental healthcare system.”

 

“I have only enough strength this morning for a few lines. [My daughter] was discharged in 2011 with no psychiatric follow up appt. We scrambled to find someone, but before we could, she was readmitted to a second hospitalization. She had to drop out of school for a second time. She was too far behind. The [caregiver] had put her on a drug that literally made her bang her head on the wall. Then she was hospitalized another two weeks, and upon discharge the social worker made no referrals or linkages for her in the community, and would not respond to my inquiry about her diagnosis. I asked and her response was, ‘What does that matter?’

“She came home with us, and for the next two months, it was awful. In February, she was psychotic again, and ran out of the emergency room when I tried to get an evaluation. She was noncompliant with meds, and thought she was pregnant. She spent two weeks in one hospital and I threw a fit about her being sent home to us again because I had a 14-year-old at home to protect. She had become physically aggressive as well. They sent her to a state hospital after my totally pissing them off, and she stayed there for two months.

“My biggest frustration is no linkages, no follow-up, no support, etc. We were treated like nosy people wanting to meddle in our child’s life but, she was sent home to me to deal with every time. And, each and every time, I felt more inadequate to help her and to protect my other child. [Her sister] was terrorized and slept with her bedroom door locked. She also became angry with me, her mom, for not being able to protect her from her sister.”

 

 

Sometimes the afflicted family member is not a child, but a parent. Whether or not that parent has consented to treatment—and often they have not—the strain suffered by the spouse and children can be overwhelming. This eloquently written post offers an example:

 

“I must say that helping my kids to navigate their life in relation to their Daddy’s serious mental illness is serious emotional work. Tonight I held my 10 year old ‘Baby’ girl as she opened up and told me that sometimes she just starts feeling sad and then ALL of her sadness comes over her at once. I held her as she sobbed and sobbed. ‘Why can’t we have a normal family?’ ‘Why can’t we live in our own house where I could have my own room?’ ‘Why did my Daddy have to get sick?’ ‘Will it ever be okay?’ ‘Why can’t the doctors just fix this?”

“I want to know too.

“She voiced the little girl version of the questions that claw at my own heart and mind. The grief and loss come at us in waves. Tonight we sat and cried together. Her tears streaming down my chest and mine in her hair. . .”

 

 

 

The mother below and her son are casualties of grotesque, yet pervasive laws that place the “civil rights” interests of a person in psychosis above the right of a doctor or psychiatrist to order antipsychotic medication and/or involuntary commitment to a center for treatment. In most states, such a patient may be treated against his will only if he “demonstrates a danger to himself or others.” Given that virtually the only way to “demonstrate” such a danger is to enact it, this misbegotten law often has the effect of pushing psychotic young people into criminality.

 

“When my grandson was 11, we begged for help to keep him safe and out of trouble. Several psychiatrists later and many tears and meds for him, we were told: wait till he gets in trouble with the law. Then he will get help. His school told us the same thing. No one understood that what they were telling us was our fear!! We didn’t want this sweet soul of a kid getting into trouble with the police! We were not that kind of family, he was not that kind of kid! We were not going to let that happen! We would fight, pray, restrict him, take him to every doctor we could find. . .

“When mental illness takes hold of our kids we have no control. Mental illness wins over and over again. He is now 20 and hanging with some more worldly friends, friends whose families must have said and fought for the very same things. We must fight and tell the world how our kids didn’t have a chance. They did not pray for mental illness any more than one would pray for cancer. We need to fight for hospital beds in which to keep our kids safe. Our kids need to be able to have safe places to live, affordable meds, support and understanding of their illness. God hear my prayer!!!”

 

 

 

From this message, and others, it is clear that not even psychiatric doctors can be automatically trusted to have the competence and temperament necessary to help their patients.

 

“A bad day at the doctors. Our city had to basically shut down [its psychiatric care center] because of diverted funds, but after waiting a year, my loved one got an appointment, which was today. In the past year, we had seen a private psychiatrist who didn’t [ participate in my state’s Medicaid program], but would prescribe anti-anxiety meds to help [forestall involuntary confinement]. But she would no longer see him.

“The appointment started off badly as this new doctor called for security before my son even went into the office—possibly because of [troubling] paperwork he had filled out or because of his unusual look. In any case, the security thing set him off more than usual and the doctor made him leave and he is not allowed to return. I listened to the usual four-letter tirade all the way home, my son saying he would never go to another doctor again and don’t ever ask him to. He got out of the car before I came to a full stop at the house. I am so not looking forward to what will happen tonight. De-escalation armor on.”

 

 

 

And then there is the judicial system. As with psychiatrists and doctors, judges are commonly assumed (by outsiders and families of the afflicted alike) to be specifically educated in the neuroscience of chronic mental illness. They are assumed to recognize their moral duty to proceed with exceptional care and knowledge in adjudicating the fate of the most helpless people on earth. Doctors and jailers, of course, are bound by the same expectations.

 

A special test of that duty is their understanding—or lack of it—of the fact that the single most destructive action against a mentally ill inmate (in fact, against any inmate) solitary confinement, which quickly trigger and/or deepen psychosis.

 

Judging by the content of this mother’s message, her schizophrenic son has been failed by everyone in this chain. Both he and his mother have paid the price.

 

“My son’s court case is tomorrow. What’s tragic is the fact I begged for help since November 1. I faxed over a Do Not Release letter stating he was a serious harm to himself and me. Now, my son has spent three months in jail and has been allowed to deny all medications. My son suffers from anosognosia [a clinical term meaning “lack of insight into one’s mental illness”]. So, tomorrow, he learns the painful truth that his competency evaluation came back not competent to proceed.

“My son believes he aced [his mental competency test] and is coming home to me. But the doctor found him incompetent. No shocker there! If they had only listened to me back on November 1, he wouldn’t have had to spend three months and counting in jail! Plus, I wouldn’t have been severely beaten and cornered in my own bathroom [by him] for a second time. Now, my severely delusional child has been off all medication for a month. Talk about starting from ground zero!

“What he will experience tomorrow will be criminal. He will learn he’s incompetent, while wearing shackles and handcuffs. I fucking hate our system!!! He doesn’t understand his illness. His rights will be taken away. He will suffer from the phases of grief even though it is he who is lost to us. He will be left in a jail cell awaiting placement in the state hospital, which could take one to three months because the waiting list is so long.

“I begged with my son to call Disability Rights to represent him but he said he didn’t have a disability even though he’s received Disability for 5 years! What’s even more fucked up is that Disability Rights said they could only talk to my seriously delusional child. That is why he had to call! What a joke! I know so many parents who have lost their children with a serious mental illness in jail. So, please pray and send out positive messages into the universe that he makes it through, and finally receives the help he deserves!

 

This mother’s son was a small and thin 17-year-old, when local police arrested him for trespassing. The mother writes that, in a psychotic state, he had wandered into a neighbor’s house and fell asleep on a couch. The neighbors called police, and who, instead of taking him to a care facility, put him in jail. The mother has repeatedly called for compassion and treatment for him; so far, her calls have been ignored.

 

“Today is another day. It’s so hard to move forward with my life. We are stuck in this insane limbo. My son called today [from jail], and says mommy, ‘the inmates that hand out the trays they took most of the food off my tray. The guards were standing there. They said I have to pay a debt. They say I have to pay them if I want to eat. Put money in [X]’s commissary Account so I can eat.’ Over the past month, our son was in solitary confinement for almost two weeks. They stopped his antipsychotics cold for four days. He has psychosis, and is hearing voices. After the assault [by inmates] two weeks ago, he has a concussion.

“He’s been denied an MRI, or an emergency-room visit, despite my pleas. His vision is blurry, headaches, and nausea. He is emotional from the head injury. They will not wake him for his morning antidepressants. Now tonight he has informed us they are trying to extort money by starving him. So he was crying again tonight. We hope next month he sees the forensic psychiatrist.

“[The jailers] extort money for visits, commissary, basic necessities, phone calls, fees, per-day jail incarceration fees, fines, restitution, medicines, doctor fees, etc. Our son was charged as an adult at 17. The boy who dances like Michael Jackson, and plays 5 instruments. He hears voices. He has auditory hallucinations, and Asperger’s. Fifteen times, I tried to hospitalize him. Instead He went to jail where he spent weeks at a time in solitary confinement. He was beat up, his vision is still affected. He still had not had an mri.,. Tonight he sits in jail at just 18. He is not a hardened criminal. He’s a good, sweet kid, he wouldn’t hurt a fly. Every day I pray he will come out of this alive. My heart is shattered!

 

 

Here is another example of solitary confinement used as a blunt instrument—to effectively punish the victim of a jail beating.

 

“I just got off the phone with my son. He was beaten up two weeks ago [by inmates], and the jail’s answer was to put him in lockdown [solitary confinement] for 23 hours a day by himself. I had him agreeing to meds but they gave him the wrong meds and now he won’t trust them. He has been in the county jail for six months, and finally saw a judge for the first time last week. Now they need six weeks’ revaluation. Meanwhile, they keep him alone in lock up. He can call me on his hour out. He just called screaming and crying to get him out. I can only tell him he needs to hang in there and we are doing the best we can. But he’s slipping more. And nobody in the courts seems to care. My heart is breaking. His birthday is Wednesday. I am a single parent, and he’s my youngest.” 

 

And here is another example of the foolish inadequacy of “danger to himself or others.” Given that virtually the only way to “demonstrate” such a danger is to enact it, the law generally does more harm than good.

 

“The doctor told me, “‘Wait, N—, he’s not bad enough yet, he hasn’t committed a crime!’ [And then he said], ‘Your son is an adult. He has the right to be crazy if he chooses.’ 

My son has slipped through the cracks in every instance. There’s no consideration for families living with an untreated psychotic person except when it’s too late. We live in fear of our own son.”

THE JAILHOUSE CRUELTY NEVER ENDS

Thanks to my friend Teresa Pasquini for alerting me to this. Not until you read fairly deeply into the story will you discover that Andrew Chaylon Holland, the helpless victim of this savagery, “began to manifest schizophrenia in his 20s,” that he had faced nine criminal cases between 2014 and 2016 for assaults “directly related to his mental illness,” that he had difficulty staying on the medications that stabilized his behavior, that in rational moments he declared his wish to continue psychiatric treatment and rehabilitation, and that even though a superior court judge had recommended treatment for him a the county’s mental health inpatient unit, he died after suffering through 46 hours in a restraint chair inside the county jail. Case closed.

The Dark Ages live on in contemporary America’s treatment of its seriously mentally ill. They will not end until American society faces up to this ongoing pageant of atrocity. Faces up and demands that, like disembowelment, drawing and quartering, keelhauling, slavery, child labor, forced sterilization, and burning at the stake, jail and prison abuse of the mentally ill (and every other prisoner) cease!

http://www.sanluisobispo.com/news/local/article144057364.html

A Penetrating Review From a Dear Old Friend

Mike Miner and I were inseparable buddies in our last year in the School of Journalism at the University of Missouri. In those lamb-white days of spring 1963 that meandered innocently toward the world-shattering assassination of the following fall, we rollicked through the kind of friendship that has mostly gone missing in the present world of dread and suspicion and the bristling arsenals of hip.

We played some college pranks. One of them I think involved a football in a classroom; I can’t remember much more than that. We covered sports together for the J-school daily newspaper, we got permission to resurrect the campus humor magazine, Show Me (recently banned for, horrors, profanity). We saved our quarters and pooled them to treat ourselves once a month to a $1.50 pizza in town. We went to the movies and entertained grateful patrons around us by shouting wisecracks at the screen. We showed our Brando-esque wildness (“What are you rebelling against?” “Whadday got?”) in other ways: by sliding saltshakers across restaurant table surfaces, hoping they would hover on the very edge, until one didn’t and the waitress rushed at us.

You know. Wild stuff like that.

And we talked and talked. About the “future.” About what we would “be.” And we wrote and wrote. Newspaper articles, jokes for the humor mag, stuff.

We kept the friendship together after graduation. Mike went into the Navy and I wangled a magazine assignment to Hawaii that coincided with his ship docking at Honolulu, and we did that town. (Saw the John Wayne/Patricia Neal navy movie “In Harm’s Way” together; walked out of the movie theater verklempt, although we’d never heard of that word then. Drowned ourselves in chocolate milkshakes.) Then I went back to Chicago and Mike went off to the South China Sea.

He made it through. After his tour was over, we newspapered together in St. Louis and then Chicago. Toured Ireland and London, and my easy, delightful companionship tested the limits of Mike’s capacity to long-suffer.

And then. . .you know. . .time is the longest distance between two places. . .I headed to New York; Mike stayed in Chicago.

I always believed that Michael was destined to be the major writer between us. He knew theater, and knocked out several good plays and wonderful poems. His wit was sly and dry, and his literary gifts even then were enormous. He was better than I ever was. Still is.

And lo and behold, he did become the major writer. At a weekly paper called The Reader, he has built a name for himself as an institution of superb, intrepid reporting and a writing style that could keep company with Ben Hecht, Mike Royko, all those Windy City giants. Whereas I was kind of a nomad, Mike committed himself to a place, and mined it deeply for story. Some other pretty good writers have done that. Faulkner.

We kept in touch a little. Facebook made it easier when it came along. Still, it was sporadic.

In July 2005 the “future” arrived for me. Right between the eyes. My younger son Kevin, deep in schizoaffective disorder, hanged himself in the family basement.

A decade later I got it together enough to write my book about mental illness: NO ONE CARES ABOUT CRAZY PEOPLE.

And then, this week, my old friend Mike showed up again. In the form of the review that you will find below.

You talk about verklempt. You talk about friendship.

Thanks, Mike. Game of saltshakers sometime?

In No One Cares About Crazy People a father addresses his sons’ mental illness

COURTESY RON POWERS
Ron Powers’s sons Dean, left, and Kevin, right, pictured here as children, both later suffered from schizophrenia.

As you read No One Cares About Crazy People you might think it’s two books or you might think it’s one. There’s the book author Ron Powers tells us that he set out to write—a critical history of societal responses to mental illness—and there’s the personal story that compelled him to write this book—the raising of two sons who became schizophrenic, one of whom killed himself. An agent told Powers that to write one he must write the other. And so he has.

For a time beginning in college and continuing to the Sun-Times—where he won a Pulitzer Prize for TV criticism in the early 70s—Powers and I were close and had the forward-looking conversations young men have. Never—I repeatedly thought as I turned the pages of Crazy People—did anything cross our imaginations close to what lay in wait.

Crazy People is his response to that rendezvous. It draws on the wit and anger I remember, on research compelled by circumstance, and on paternal devotion then untapped in either of us. Powers has collaborated before—with Ted Kennedy on Kennedy’s memoir, and with James Bradley on Flags of Our Fathers. In Crazy People, Powers, the reporter and stylish writer, collaborates with himself, the father with a story.

The social history of mental illness, no reader will be surprised to learn, is doleful.

“The world of mental illness,” Powers writes, is everywhere; it hides in plain sight. “Its camouflage . . . little more than the human instinct to reject engagement with the pitiable, the fearsome, the unspeakable.”

Rather than illness we’d see witchcraft; rather than humans in need we’d see menace, and we’d feel a duty not to assuage agony but to hide it from sight. The places where the mad were hidden gripped the public imagination for their gothic mystery. Powers tells the centuries-long history of the London madhouse known as Bedlam; in Saint Louis, as he surely remembers from his years there, an institution for the mentally ill was known to one and all simply as “Arsenal Street.”

You kept your distance from Arsenal Street.

Mental illness can hide in plain sight because we don’t like to think about it. But take your own inventory as I take mine. Two members of my book group have grown schizophrenic children. One daughter’s closest childhood friend is schizophrenic; another daughter’s grade school Spanish teacher lost her husband when he was stabbed to death during a psychotic breakdown by their schizophrenic son.

Powers and his wife, Honoree Fleming, raised sons Dean and Kevin in Vermont, where Powers wrote and Honoree, a professor, taught biochemistry and did research. Both sons were bright and creative, and Kevin was a guitar prodigy. The instructors his parents found for him soon threw up their hands—they had no more to teach him. But he was not yet 21 when he hanged himself in the basement of his family’s home.

Do madness and creativity go hand in hand? Powers devotes a chapter to this ageless question, to which there are correlations to be cited but no clear answer. Asked by a teacher in grade school to identify human needs, Kevin wrote, “I need music.” He inhabited, his father tells us, an “inaccessible” inner world of music, though the yield of that world can still be sampled today, as in a concert at Interlochen and an album the two brothers recorded together.

Powers places emphasis on the power of stress to trigger psychosis, and much less emphasis on the role of genetics, though years earlier his own younger brother had killed himself. Creativity and stress were palpable presences in the young lives of Dean and Kevin, and it’s those lives that preoccupy their father.

One Friday night toward the end of Dean’s junior year of high school, he took a curve too fast and his car slammed into a tree. The understanding around town was that Dean had been drunk, though he wasn’t. The girl next to him suffered injuries she was years recovering from, and her parents crusaded to see Dean thrown in prison. The high school principal banned Dean’s picture from the yearbook. Awaiting sentencing, prison a clear possibility, Dean wrote, in an essay, “my life is like a river and I am being swept away helplessly.”

And in Crazy People his father writes, “These were the days and months and events, I am convinced, that launched my eldest son into his rendezvous with schizophrenia.”

But today, Powers reports, Dean’s last psychotic episode a few years behind him, “he seems in possession of himself, aware of his limitations, and ready to live on his own in the wider world.”

Powers also introduces readers to a word I’d never heard or read before: anosognosia, or, “the false conviction within a person that nothing is wrong with his mind.” Powers calls it a “cruel joke.”

I’ve always supposed the joke is that when the meds work they make the patient feel so clear-headed he decides he doesn’t need them any longer. So he hides his meds, as Kevin did, or flushes them down the drain. Then he reverts. Confronted, he lies. But Powers says changing a patient’s ways isn’t as simple as screaming sense at him or waiting for him to learn from experience. He says anosognosia is actually a physiological condition disrupting the brain’s ability to recognize the condition it’s in; it shows up in 50 percent of schizophrenia cases and 40 percent of bipolar cases.

As his book concludes, Powers puts anosognosia to use as a symbol of obliviousness and denial—our own. He has seen what the mentally ill ask of the world—which is simply a place in it.

“The mentally ill people in our lives, as they strive to build healthy, well-supported, and rewarding lives for themselves, can show us all how to reconnect with the most primal of human urges, the urge to be of use,” Powers writes. “To put it another way: the mentally ill in our society are awaiting their chance to heal us, if we can only manage to escape our own anosognosia and admit that we need their help.”

Does putting the shoe on the other foot this way seem a sentimental stretch? I would say yes—if Powers were writing only about a set of issues he wanted to wrap up in a fancy ribbon. But the project’s too personal for that. He’s told us stories about the mentally ill burned at stakes, chained in dungeons, flogged and lobotomized, and treated to à la mode theories that they’d do just fine if turned out onto the streets, that they aren’t really ill at all because crazy people are the only sane ones. This is the history of society’s predisposition not to give a damn about Dean and Kevin!

And Powers won’t have it. They speak and we must listen. They are his sons.

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A STUNNING REVIEW IN THE WALL STREET JOURNAL!

When Your Sons Are Schizophrenic

 

In “No One Cares About Crazy People,” Ron Powers writes of parental love, bewilderment and rage at the vagaries of biological fate. John Donvan says it is one of the most engrossing accounts of raising a family he’s ever read.

Photo: Getty Images

 

Winning the Pulitzer Prize is one kind of writer’s dream. Nearly a year on the New York Times best-seller list is another. A third: when the best seller becomes a movie with a big-name director. Ron Powers is among the few to hit this particular trifecta. The onetime newspaperman won the Pulitzer for TV criticism in 1973, and “Flags of Our Fathers,” the immensely popular Iwo Jima history he co-wrote, arrived as a film in 2006, directed by Clint Eastwood. Mr. Powers’s newest book is a memoir, covering many of the years during which he scored these wins. A victory lap, however, this book is not. The story he relates—with searing humility and deep respect—concerns his two sons and the mental illness that flowered within them. “No One Cares About Crazy People” is a chronicle of deepening devastation recorded by a father able to do little in response to his boys’ suffering other than to witness and to love.

Mr. Powers’s memoir is the culmination of both those processes, and is motivated by his insistence on making us care—not just about his two boys, Dean and Kevin, but about all individuals and families wrestling with schizophrenia, bipolar disorder, acute depression and other forms of mental illness. His title signals his grim recognition that this will be an uphill battle. He pulled the phrase, verbatim, from an incident unrelated to his main story: In 2010, the future governor of Wisconsin, Scott Walker, was still serving as the Milwaukee County executive when a scandal erupted over the abuse of patients at the county mental-health hospital. Subpoenaed emails revealed Mr. Walker and his aides worrying about damage to his political future. In the midst of these exchanges, one aide, who later went to prison, attempted to reassure another member of the team with the blunt political assessment that “no one cares about crazy people.”

Unfortunately she was right—mostly. Few of us care about the challenges of mental illness until the emergency is inside our own homes. Mr. Powers didn’t—until his sons began showing symptoms as teenagers, which is usually when these conditions clearly manifest. But once he was awakened, the world he had entered frustrated and enraged him.

Mr. Powers gives away the climax of his story in the preface: Both his boys, starting at different times, were beset by schizophrenia, and for the younger one, Kevin, the illness proved fatal. At 20, after three years of struggle, he hanged himself, at home in the basement, while his parents slept upstairs. Mr. Powers’s decision to put this stunning revelation on his first page was a gesture of respect to his son’s memory. There would be no storyteller game-playing with Kevin’s life—no ominous foreshadowing, no false hopes for a happy outcome planted along the way. If anything, the author risks scaring away readers uncomfortable with darkness. But those who stay will learn not only what the stakes are but also why they are on this journey.

The stay is worth it, for what unfolds is one of the most engrossing accounts of raising a family I have ever read, one in which Mr. Powers makes universal his themes of parental love, bewilderment and rage at the vagaries of biological fate. At the start, he was just a dad, and his wife, the scientist Honoree Fleming, was just a mom. Neither had any experience in raising children with mental-health challenges. They weren’t experts in schizophrenia. Nor did they need to be, for the first 15 years or so. Mr. Powers’s early chapters conjure his family’s time of pure ordinariness—a quality he cherishes all the more because it was lost. He seems tormented by these recollections—his family’s “before” years—but also blessed by them. And by sharing them he lifts his book into something more elevated than a eulogy for Kevin.

Instead, Kevin lives again in Mr. Powers’s poignant portrait, which he pieces together from excerpts from middle-school essays; quotations from father-son bedtime conversations that sound as fresh as last night; and, most powerfully, Mr. Powers’s descriptions of Kevin’s musical talent. The young man was a true prodigy on the guitar, playing since age 4, and was on his way to making a career as a singer. You can find at least one of his teenage performances on YouTube, and his dad’s right—Kevin Powers was going to be great.

All of which makes his deterioration, with its declared inevitability, more moving and painful to observe. Mr. Powers, in the middle of it all, had no idea where his son’s life was heading or how to keep him from slipping deeper into trouble. Medications were tried. And hospitalizations. But Kevin eventually wanted no part of treatment. The laws limiting involuntary treatment made it difficult to counter Kevin’s preferences—a reality Mr. Powers laments. In a way, Kevin had moved past his parents’ help, which is one of the things that still eats at the father even now.

Another thing is the sorry history of American society’s response to mental illness over the past two centuries. Mr. Powers thumbnails this history in chapters alternating with his sons’ stories and aims his anger at the seemingly natural impulse most of us possess to shun the mentally ill, much as we do the severely developmentally disabled. There is a loneliness to being in either of these categories, a loneliness that also afflicts the families of affected individuals and that is exaggerated by the “solutions” developed, over time, for “dealing with the problem.” Thus Mr. Powers relates the many remedies put forth over the years by usually well-meaning people who, in profound ways, missed the mark. He covers the eugenics movement; the many decades when the severely mentally ill and developmentally disabled were warehoused in so-called asylums; and the scandal that followed the deinstitutionalization movement, when a benevolent assertion of civil rights led to the shuttering of mental-health centers, but without adequate provision for former residents’ continuing need for treatment or even basics like food and shelter. The result: a swelling number of homeless and the transformation of the prison system into a custodial program for people who should be getting help, not doing time.

The real scandal of Mr. Powers’s exposé—and he knows this—is that he is not revealing anything new. These failures have been described many times, by muckrakers and reformers, since the mid-19th-century. But each time the outrage proved short-lived, swallowed up by renewed indifference or perhaps mass amnesia. As the author keeps finding, society’s impulse to “other-ize” the mentally ill is constant: These individuals are politically voiceless and therefore easy to marginalize.

The most uplifting chapter in “No One Cares About Crazy People” is its brief epilogue, focused on the present. Mr. Powers talks about getting visits in his dreams from a guitar-playing Kevin, and he reports that his older son, Dean, who was given the same diagnosis as his brother, is now “doing fine.” Dean has acknowledged that he needs help. He is, says Mr. Powers, “in possession of himself, aware of his limitations, and ready to live on his own in the wider world.”

Still, you can hear the caution in those words. Mr. Powers seems to sense that the progress is provisional; that Dean, now 35, will always be at risk; and that his own fathering remains on trial. Assuming the best, though, Dean will outlive his parents, who are his current chief protectors. That is when he will need the rest of us to be on his side—his and all of those among us who face similar kinds of struggle. That’s why this book was written: to get us to understand, to empathize, to identify. In short, to make its title a lie.

—Mr. Donvan is the co-author of “In A Different Key: The Story of Autism.”