Earlier this week I posted a call for caretakers of the mentally ill–usually parents, siblings and offspring–to throw off their habitual cloak of invisibility and silence, and launch a crusade against public cluelessness and apathy; in particular, public policymakers. The link below, focusing on my home state of Vermont, shows just one example of legislative inertia: the ongoing crisis of too few beds for too many patients in psychotic states:
And here is one searing response to my call for speaking out:
“I wonder what I would do if Tom should decide he can no longer bear this burden. If I should find him gone one morning. Would I lay down beside him, hug his lifeless body in my arms, and go to meet him? Or would I give my life to him? Tom’s voices threaten to kill him and his family. From his letters for help, which are heartbreaking, he says “they are certainly adding other types of frequencies that are causing extreme agitation, sometimes depression, anxiety, stress; voices described as scary or haunting or terrorizing; more death threats against me and my family and they won’t quit. I have driven as far as the coast and cannot get this off of me. The police just come and put me in the hospital. I don’t know how to be more clear to them and they aren’t listening at all”. What if, in the dark of night, in his madness, he did not see the mother he loves but a horrifying delusional apparition there to harm him and his family; perhaps the act of killing me would finally get him the help he needs, a chance to quiet the voices and terrifying paranoia, and find some peace.
“I have only been afraid of Tom once, his delusions of people coming to harm him, and me not understanding. I never know the right thing to do or say. His brain is screaming at him, voices only he can hear, shouting down any shred of reason that may be left. His despair and fear so great I am afraid he will lash out at anything, anybody nearby, not knowing what he is doing in his insanity. Any suggestions of getting help are met with incredulous sighs and anger. Why don’t I listen, why don’t I understand, I am the one that needs a doctor, I am the one that is in denial. I hide the knives that night.
“We leave Tom alone now. He doesn’t talk anyways, he doesn’t hear us, or if he does he responds with something unrelated and unintelligible. I buy health food and leave it around, hoping he will get some nutrition in him He isolates in his room, sometimes for weeks at a time, not bathing, sitting so long his feet and legs swell up so bad he can barely walk, drinking coffee. He is going mad in the room I had remodeled for him, to keep him safe for as long as I could. I pray he will go into a coma and I can now call and say come get him and help him, he is a danger to himself.
“I go to do the dishes, but they are already done. I don’t remember doing them. I lose track of time, I wait. The wolf at the door will surely come bursting thru any day now; it is almost six months of no meds. One afternoon Tom comes to me, puts his arms around me and says ‘I love you mom.’ I’m still a light in his mind, I’m still there.
“The months go by. I ask myself how much worse can it get, but I already know, much worse. My nightmares turn into terrifying faces coming out of the dark.”
My upcoming book’s title, NO ONE CARES ABOUT CRAZY PEOPLE, is intended as ironic: it is taken from a notorious, subpoenaed email written in 2010 by an administrative aide to Scott Walker. The aide was trying to shield the then-Milwaukee County Executive from accountability for a mental-hospital scandal that was unfolding at the time.
In the few weeks that I have been publishing this blog, I’ve found myself thinking about an alternative title, one that lacks irony and only somewhat overstates the truth.
That title would be: NO ONE KNOWS ABOUT CRAZY PEOPLE.
For centuries, society has hired, or elected, custodians to see to it that the mentally tormented are kept out of sight and out of—well, out of mind. Those who take for granted their place in the “normal” world prefer to sidestep the colossal moral challenge—the primal fear—triggered by walking, talking evidence that people very much like them can go insane. (“There, but for the grace of jails. . .”) Thus, the mentally ill continue to struggle for their humanity under a cloak of social invisibility, and silence.
None of this is to suggest that people in the throes of psychosis should be left to roam the streets. Hospital treatment and supervision are imperative during such episodes. The problem is this: despite the growing consensus among research psychiatrists that a patient’s integration into a sympathetic community can dramatically reduce the symptoms of brain disorder, progress toward this goal remains slow: impeded by the cloak of invisibility and silence.
Few people have better understood the human spoilage guaranteed by this cloaking than the great pioneering reformer Dorothea Dix, whom I quote in the epigraph to NO ONE CARES ABOUT CRAZY PEOPLE. In remarks to the Massachusetts legislature prepared in December 1842, following her tour of mental asylums in the state, the small and sickly crusader declared:
“I have come to present to you the strong claims of suffering humanity. I come as the advocate of the helpless, forgotten, insane men and women held in cages, closets, cellars, stalls, pens; chained, naked, beaten with rods, and lashed into obedience. . .”
Time has brought improvement to the plight of insanity victims caught in psychosis—the untreated, the undiagnosed, the wrongfully incarcerated, those who refuse to confront their illness and aggressively repel efforts at help.
Time has not brought enough improvement. Not early enough improvement.
The cloaked suffering of the mad thrives, and it thrives. NO ONE CARES is laced with accounts of insane jail and prison inmates, many of them unindicted, who took their lives in their cells or in solitary confinement (I hope against hope that you might read this, Governor Chris Christie of New Jersey, and reverse your support for this gruesome form of soul-murder), and who thus died beyond the range of public attention, save for a few readers of transient news accounts.
Thus, “No One Cares” is fed by “No One Knows.” The two collide, and collude.
Thus far in this essay I have focused on the “invisibility” aspect of “No One Knows.” Of equal destructive importance, I believe, is the silence. The self-imposed silence that mutes the voices of those most entitled—and, I think, obliged—to break the silence.
I speak of the close friends and relatives, parents especially, of the afflicted. These people are qualified not by professional training or certification, but by a precarious vantage-point that no one else can share who are uniquely qualified by direct observation with psychosis.
And yet here is one of the most desolate truths about “No One Knows”: it is far too often a by-product of silence. Self-imposed silence. Silence maintained by those closest to the victims of mental illness who are in active psychotic states. This usually means their relatives. Typically, “relatives” means parents. And “parents” often includes the sub-category of single mothers, women who for one reason or another have been left to care for their volatile children—often male children, as a statistical fact. (Men typically develop schizophrenia between ages 15 and 24; women, between 25 and 34.)
Left to care, and left to scream in silence as police and community social-service agencies designed to help them often fail during episodes of crisis—or in pre-crisis. Police remain under-trained in this area, or not trained at all. In too many cases, the desk-man either shrugs off the frantic phone call or the squad arrives only to make matters worse. Paramedics and social workers feel hamstrung by coils of legal restrictions created to protect the civil rights of people in psychosis who “reason” that they don’t need help. (People in psychosis are, by definition, people deprived of reason.)
And so the family caretakers scream in silence—while their deracinated children scream aloud their suicide threats or violent threats against others, often including the caretakers, as the untreated psychosis deepens. and the cop on the phone explains (in essence) that the screamer cannot be detained unless he or she “constitutes a threat to others,” and that the uttered threat is not enough; the psychotic victim must actually carry out the threat, which, of course, in theory, law enforcement exists to prevent.
The caretakers scream in silence. And their urgent silent screams go unheard by the world around them. And the cloak remains in its suffocating place.
The reasons for self-imposed silence aren’t hard to track down. They’re rooted in human nature. The fear of embarrassment—stigma—is a fundamental one. To appeal publicly for help for a struggling insane relative is to acknowledge that one has an insane relative. Most people live their lives outside the community’s spotlight. To step into its glow for any reason can be terrifying. The imagined shame and ostracism such an admission might bring on is a powerfully, and sometimes fatally inhibiting burden.
Anxiety over the future of the victim is another. What if everybody knows she is schizophrenic? She will never get a job! She will never have friends! She will never marry!
And then there is the soul-crushing factor of futility. America, especially rural and suburban America, remains dotted—clotted—with service agencies, police departments, and courts that remain either stubbornly self-anesthetized to the gothic realities of psychosis, or else are paralyzed by the fear that any action they take might violate some law or statute or other restriction, real or imagined, that would make them civilly liable or criminally accountable for carrying out a good-faith intervention. Thus, far too many desperate mothers and fathers have called police, hospitals, lawyers—anybody—for help, against a background of menacing threats and the pounding upon a locked door, only to be told: “There is nothing we can do.”
This is surreal. This is grotesque. This is beyond the imagination of anyone in the “normal” world; only those who have endured it can appreciate the resulting dread that soaks the heart and blots out hope.
Schizophrenia has struck at both my children; once, fatally. I understand the heartbreak, the dread, the galactic frustration of my fellow survivors and sufferers who must watch their loved ones slip into a state that the world would prefer not to hear about, nor try to heal. I understand the powerful protective wish to remain silent.
And yet, in my core, I cannot accept the silence. I cannot accept it because silence is the lifeblood of “no one knows,” which in turn is the lifeblood of “no one cares.”
In my core, I want to confront all the silent sufferers—“confront” is the only word—and shout at them to shout their stories from the rooftops: to badger the newspapers and radio and television stations in their communities to pay attention to their stories, and amplify them, urgently and accurately, and damn the risks of stigma and anxiety and imagined futility. I want my fellow sufferers to raise a collective voice all across the nationwide archipelago of the mentally ill. I want an impassioned, fearless grass-roots movement to rise up and intersect with the hopeful, but top-down breakthrough of the recently enacted 21st Century Cures Act.
I want the “invisible” mothers and fathers and caretakers of our most helpless citizens to take up the banner of Dorthea Dix, and affront the conscience of emergency responders, police, doctors, judges, and the largely oblivious and benumbed legislators across the country. I want to see a great and vital conversation burst into public awareness: a conversation that until now has been conducted under the cloak: in furtive telephone calls, emails, hushed conversations, and within the several “confidential” websites where members may speak candidly under strict rules of confidentiality.
All these conversation forms are cathartic. None is enough.
I grant that my career choices have annealed me to public exposure and its consequences. My training and experience, now spanning five decades, has been in journalism, which has in turn led me to nonfiction narratives. Over this time I have learned gradually to overcome my own severe native reticence, and to place truth-telling (as I understand it) above all other considerations. I have grown comfortable with violating my own privacy. NO ONE CARES ABOUT CRAZY PEOPLE, if it is nothing else, is a testament to this.
I respect—I ache for—my good, grieving, terrified sisters and brothers who cannot yet imagine shouting their stories from the rooftops, seizing the world by its lapels and screaming, “YOU’VE GOT TO PAY ATTENTION!” I wish I could deliver them from their agony. I cannot. The hard truth (as I understand it) is that they must do it themselves, until their individual voices meld into one continuing thunderous voice. We must throw off the cloak. No one will do it for us.
Yesterday he vetoed a bill that would have limited the use of solitary confinement. (As one of the most demonstrably mind-destroying forms of punishment available, it should be banned altogether, everywhere.) Now he is restricting funds for the most abject members of society, the seriously mentally ill. This points not only to Christie’s particular brand of heartlessness, but also to the destructive myopia of too many public officials about the hellscape inhabited by “crazy people.”
In the late 1990s I contributed commentaries to Vermont Public Radio. I often drew upon Dean and Kevin for subject-matter. This piece, broadcast in 1997, is one of my favorites, and captures my younger son in all his instinctual goodness and decency.
Ron Powers/VPR Commentary
Kevin and the Perfect Playboy Woman
Promo: This is Ron Powers. What’s the best defense against sleazy junk mail? Having a smart kid helps. Stay tuned for a few minutes and I’ll tell you what I mean.
Announcer’s intro: Researchers in Texas have discovered a new use for junk mail: it makes an excellent garden fertilizer. Commentator Ron Powers is not surprised.
Commentary: I was scooping out the daily tonnage of junk mail with a backhoe the other day—when I spotted an envelope that was different from all the rest. It was festooned with an oddly familiar logo; a pair of bunny-ears. It was addressed to my son Kevin. And then I spotted the legend stamped in the upper right-hand corner:
BULK RATE U.S. POSTAGE PAID BY PLAYBOY
Well, I opened it. Call me a nuidge. Inside were—guess what?–glossy photographs of young women with complicated hair, plunging décolletage and lip-gloss. But here was the zinger: a personal message for my kid: because of his, quote, “proven good taste,” he was being invited to represent, quote, “The Sophisticated Male of the Nineties” and help Playboy Magazine construct—I quote again—“The Perfect Woman.”
“You read it right!” the copy burbled. “From the many intelligent men in and around your state, we have selected YOU for our annual Perfect Woman Poll.” The potential rewards included a vacation for two in the Bahamas; round-trip airline tickets to anywhere in North America and lots of cash.
The next page listed the questions that Kevin would have to answer. The categories included “Vital Statistics” (the Perfect Woman’s measurements at bust, waist and hips); “Body Parts” (length and shape of legs, firmness of stomach, whether she should have an “innie” or an “outie”) and “Fashion Statements” (whether she should mostly wear bikinis, high heels, negligees, tattoos, handcuffs, or “nothing.”
Now, here’s what you have to understand about Kevin. He still carries the cat to bed with him. His passions include Monopoly, bagels with cream cheese, playing guitar and trying to make contact with Scottie Pippen of the Chicago Bulls. Are we talking Sophisticated Male, or what?
How Playboy found Kevin was not hard to figure out. A few months ago his older brother took part in a magazine subscription drive for the high school. The family all chipped in. Kevin’s choices were Snowboarding and Sports Illustrated. This got his name into the computerized data system of subscription lists, which magazines buy and sell to one another. Playboy was only a matter of time.
When Kevin got home from after-school ice skating, I asked him if he had ever thought what the Perfect Woman might be like.
He was still wearing an orange knit cap pulled down to his eyes, and his cheeks were scarlet from the cold. He gave me his sidelong, you’re-tricking-me look.
“Like a grown-up?” he asked after a minute. I nodded. His blue eyes trailed upward in thought.
“Smart. . .” he said. He thought again.
“Pretty. . .” he added.
“Who doesn’t smoke.
“A very nice attitude.
“Who skis or snowboards and likes to play sports.” His gaze turned quizzical again. “Why do you want to know?”
I told him he had received a brochure from Playboy Magazine asking for his ideas about the Perfect Woman.
“I did?” he asked. “Where?” and then: “Why did they write to me?”
I told him the letter mentioned his “proven good taste.” Kevin tilted his head. “How do I have good taste?” he asked. “What are you talking about?”
I decided to show him. He was excited at first—the name “Playboy” was not unknown in the corridors of his school—but when I put the brochure in his hands, he looked at it for several minutes, and his mood changed.
“Those people probably smoke,” he said quietly. He sifted through the enameled images of cleavage and fishnetting and pouty lips.
And then, walking out the door of my study: “I don’t want to think about it.”
You know what? The direct mail geniuses at Playboy Magazine got it right. The kid does have proven good taste. This is Ron Powers in Middlebury.
In case you’ve been kidding yourself that public care for the mentally ill is snugly enfolded in the bosom of America’s state government systems, and monitored by informed, crackerjack news organizations, take a look at the peculiar string of factoids stumbling forth from Oregon.
The factoids originate in a verifiable event. On Dec. 1, Governor Kate Brown announced her plan to close down the Junction City Mental Health Hospital, which opened with great fanfare just 18 months ago; boasts a 174-patient capacity, and offers employment to 422 people in a community that needs every job it can get.
That, as Dan Rather used to say, is what we think we know at the moment. Beyond this base, information remains sketchy, motivations murky, the announced rationale questionable, and the future of the facility’s patients up in the air, where the futures of such unfortunate human beings generally reside.
The governor herself—a Democrat, by the way, and thought of as generally progressive—has attributed the necessity to, brace yourselves, a tight state budget. Tight budgets are virtually always given as the reason for tapping into funds and facilities for mental health care, which in turn are virtually always the first areas to be tapped in a budget pinch.
But is Oregon really suffering a budget pinch?
Governor Brown pointed to a “projected” $1.7 billion revenue shortfall set against expenses for 2017-19. She intends to narrow this gap partly by raising taxes on cigarettes, liquor, and hospitals (a grouping that one does not often encounter). Yet a “Revenue Outlook” released by Oregon.Gov begins by reporting that “Oregon’s general fund outlook remains stable” https://www.oregon.gov/das/OEA/Documents/revenue.pdf and that revenues “are expected to total $19,526 million in the 2017-19 biennium, an increase of 8.4% percent from the prior period,” although $40 million below the September forecast.
So, again, to paraphrase Donald Trump—“Pinch?—or no pinch?”
Even if the Governor is drawing upon more reliable comparisons than are readily available to an outsider, it seems peculiar, bordering on bizarre, that she would choose the Junction City Mental Health Hospital as a first-round sacrifice.
Junction City opened to great applause and greater hope in March 2015, its features harkening back to the exalted “Moral Treatment” designs of the 19th century. (The cost was either $180 million or $84 million, depending on which Oregon press account you read, a testament to the quality of press scrutiny. As of this writing, no major outlet has done an in-depth examination of the proposed closing or the political dynamics behind it. My own calls and emails to Oregon reporters are as yet unanswered.)
Its rehabilitative amenities include a library, spiritual center, hair salon, fitness rooms, classrooms, a gym, and outdoor quads. Patients can go on outings (after a review process, learn social skills and money management, acquire cooking skills and learn how to call for help.
And in case those humane offerings might strike some taxpayers as a little—oh—cushy for people who are, well, you know; consider this: the alternative to clinical rehabilitation is, typically, jail or prison. These systems, dumping-grounds for an obscene number of afflicted people, add up to a far greater drain on public revenues than does rehabilitation. Oh, and by the way, they tend to be unspeakably barbaric. To the sane and insane alike.
In early May 2015, less than two months after Junction City opened, a public-interest group called Disability Rights Organization (https://droregon.org/bhu/) released a report that found “Oregon prisoners with severe mental illness are routinely tasered, pepper-sprayed, isolated, and denied access to adequate mental health care.” (“Isolated,” by the way, means “placed in solitary confinement,” the single most devastating assault prison guards can levy on a mental-illness sufferer.”)
As I write in NO ONE CARES ABOUT CRAZY PEOPLE, this list of sanctioned atrocities has changed hardly at all from the horrors of Bedlam Asylum more than 700 years ago, save for the technology.
I will continue to monitor the developments surrounding Junction City in the coming days, and the bedrock reasons behind the governor’s decision. Meanwhile, the links below offer a fuller discussion of some of the points I have raised.
A new advance notice for NO ONE CARES ABOUT CRAZY PEOPLE (due March 21) has arrived–from Dr. E. Fuller Torrey, one of the true statesmen and -women of mental health-care reform. I’m humbled to receive it:
“Ron Powers and his wife never expected to visit the exotic lands of schizophrenia until their two sons became affected. A gifted professional writer, Powers takes the reader along on his explorations as he tries to understand why it happened and what to do. What he finds is ‘the most dreaded of all human mental disorders.’ Very readable and highly recommended.”
E. Fuller Torrey, MD
Author, Surviving Schizophrenia
Click here to read more advance notices for No One Cares About Crazy People.