Advance Notice

From Booklist Online

Pulitzer Prize–winning writer Powers shares his family’s struggles as two sons suffer from schizophrenia. Youngest son Kevin ends up committing suicide by hanging himself in the basement just before turning 21. Older son Dean remains under treatment for the disease. So much pain and loss, helplessness and frustration. Powers recalls the boys’ darkening moods, increasing opaqueness, and psychotic episodes. He points out a major obstacle to survival is anosognosia—a lack of insight into one’s condition, a faulty belief that nothing’s wrong with your mind. His very emotional memoir also covers some of the history, legislation, pharmacology, and science of schizophrenia. He reminds us how apathetic and cruel society can be when it comes to mental illness. Consider the colloquial nomenclature: loonies, lunatics, nutcases, psychos, wackos. He reviews the tsunami of miscalculations and mistakes in the 1960s that launched mental-health care on a terrible trajectory: the denouncing of psychiatry, dosing patients with new drugs to make them more docile, and releasing hundreds of thousands of mentally ill individuals from psychiatric hospitals and community-health centers. Presently, prisons are America’s biggest mental-health facilities. Powers grieves, “Too many of the mentally ill in our country live under conditions of atrocity.” Shame on us.

— Tony Miksanek

SPEAK OUT!

Scott Walker By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
Scott Walker By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
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.

the screamThat 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.

Dorothea Dix
Dorothea Dix

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.

More on this subject later in the week.

Advance Praise for No One Cares About Crazy People

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.