QUINCY — After Ron Powers’ youngest son committed suicide in 2005, the Pulitzer Prize winner and prolific author swore that he would never write about the “hellish” pain that he and his family went through.
“I was in a daze in the first five years, then the healing began, and I realized after reading more about the disease (schizophrenia) that I really had to do this,” Powers said.
Powers’ book starts with the words: “This is the book I promised myself I would never write.” But as he began going back through photos, emails and other items that belonged to his youngest son, Kevin, Powers saw the need to tell the world that ignoring mental illness is a terrible mistake and a social injustice.
National statistics indicate that more than 10 million Americans will suffer a serious mental illness each year and with more than three people in the average home, more than 34 million American lives will be disrupted.
Powers’ older son, Dean, was diagnosed with schizophrenia only months after Kevin’s suicide. Thanks to informed treatment choices, Dean’s illness has been controlled.
But too many people with mental illnesses are sent to jails, Powers said.
“The moral necessity for us as individuals, and for our country, is to reclaim these people,” Powers said.
“There’s primal fear and prejudice against the mentally ill and because of that, (society) punishes the mentally ill when we should be treating them.”
Since his book was published, Powers has been scolding the government for spending $31,000 per year to jail the average person with mental illness, rather than spending the $10,000 needed for treatment. He also has promoted programs that help those with mental challenges.
“Organizations around the country, like Transitions, are taking up the slack, and I’m so gratified that people are doing what they can to help,” Powers said.
Barb Baker Chapin, director of development at Transitions, hopes that Powers’ visit will help people see mental illness in a new light.
“One in five of us will suffer from a mental illness at some time in our lives, and yet there’s still such a stigma associated with it,” she said. “I hope Ron Powers’ very personal story can help us have a dialogue about the changes we need to see in the mental health system and the way we’re funding it.”
Powers has written 16 books, including “White Town Drowsing,” which looked at his hometown of Hannibal during the 1980s. He also wrote a biography of Mark Twain, “Mark Twain: A Life” that was a New York Times best-seller and a finalist for the 2005 National Book Critics Circle Award. In more recent years, Powers was co-author of “Flags of Our Fathers” and “True Compass,” which were both No. 1 New York Times hard-cover nonfiction best-sellers.
He was awarded the Pulitzer Prize for his critical writing about television for the Chicago Sun-Times in 1972. He also won an Emmy Award in 1985 for his commentaries on “CBS News Sunday Morning with Charles Kuralt.”
Several of Powers’ books will be available for sale. A complementary copy of “Flags of Our Fathers” will be presented to those who buy tickets to a social hour with the author, and he will do a book signing.
Ticket information for “An Evening with Pulitzer Prize-Winning Author Ron Powers on April 26
Meet and greet tickets are $75 for the 6:30 p.m. social hour, complementary copy of ‘Flags of Our Fathers,’ the chance to meet Powers during a book signing and preferred seating.
Preferred seating tickets are $25 each.
General admission tickets are $15, with doors opening at 7:30 p.m.
Tickets are on sale at the Oakley-Lindsay Center box office at 217-222-3209, or online at http://www.1qct.org/.
I was honored to deliver this talk on November 4 at Austin, at the annual meeting of the American Association of Medical Colleges. AAMC is a 142-year-old organization dedicated to improving American health care through educational initiatives and state-of-the-art medical research. My invitation signaled that the AAMC has recognized mental healthcare as an essential part of their outreach.
I feel grateful to the distinguished outgoing president of AAMC, Darrell G. Kirch, MD, for his warm introduction, and to Stacia Gueriguian of the AAMC for her superb stewardship of the technical production. If you find the talk useful, I urge you to repost it on the web, and perhaps to recommend it to a university, public-school system, or community-access channel in your area.
-Catherine Rippee-Hanson, a sister of James Mark Rippee
You know about Mark Rippee if you live around Vacaville, CA. Or if you read the text of the talk I delivered at the Pathways to Hope conference in San Antonio on August 24.
Mark Rippee has survived on the streets of Vacaville for nearly twelve years despite being sightless, missing parts of his brain, enduring the pain of an interior metal rod to support his shattered right leg, fifty surgeries—many of them to heal the wounds he has suffered from repeated beatings by passing thugs. . .
. . . And, oh yes: despite his diagnosis of acute schizophrenia (a diagnosis that, weirdly, Mark’s family cannot definitively confirm because of restrictive and nearly useless laws).
Mark Rippee is one of more than one hundred thirty thousand homeless people in California as estimated by the Department of Housing and Urban Development. Most of them are unsheltered. That figure amounts to one-fourth of the national homeless population (553,742). As one legislator wrote,
“Homelessness and homeless encampments have become a part of the permanent landscape of California.”
As hundreds of millions of dollars in new-housing money languish in law-court entanglements, the death toll among California’s homeless has been rising: infections, pneumonia, cancer, cirrhosis, and other treatable diseases claim ever-more victims. In 2017, eight hundred thirty-one street people died in 2017, nearly doubling the count of 458 in 2013.
The homeless mentally ill (in California and elsewhere) exist under twin, paradoxical curses: they are public eyesores. Pedestrians grimace as they step over their inert forms or cross the street to avoid their wild gestures and ranting.
At the same time, they are invisible: faceless statistics, generic, interchangeable, somehow less than human because of their madness.
Mark Rippee is one of these living paradoxes. Perhaps he should be their national symbol. His nearly faceless face is the face of the faceless: the face of our gravely disabled brothers and sisters who live and suffer and howl and die, bereft of help from government, agencies, and many churches, on the streets of our cities. Force yourself to contemplate what is left of Mark Rippee’s face for as long as you can stand to hold his sightless gaze and think about the obscenity of your country’s mental healthcare system.
This is a man who is severely, gravely disabled, living on the streets for 12 years. –Catherine Rippee-Hanson
Thirty-one years ago, Mark Rippee was a handsome and hopeful young man. At age 23, he was a productive member of the Vacaville community, a robust construction worker with a girlfriend, still mapping his life-plans.
Those plans blew to bits in an instant on the Sunday night of June 21, 1987—Fathers Day. On a dark country road, astride a Harley-Davidson motorcycle that he had owned for only a few days, Mark swerved to avoid an oncoming car that had drifted into his lane and tore through an alfalfa field until the bike ploughed at high speed into a grain harvester.
This is a man who left massive amounts of grey brain matter from his Frontal lobes lying in a dark field. This is a man who paramedics transported without sirens at first, thinking he must be DOA. –Catherine Rippee-Hansen
The impact tore a deep T-shaped gash across Mark’s face, destroying his eyes and exposing his frontal lobe, grey bits of which were found around him. His right leg was ripped open from his crotch to his ankle and broken in several places The EMTs who loaded him into an ambulance assumed he was dead until they noticed movement en route to the hospital.
Mark Rippee survived his shattering injuries. His accident, however, struck hard at his close-knit family. His father James suffered a breakdown soon afterward, entering a state of denial that led him to prohibit Mark’s twin sisters, Linda and Catherine, from securing Mark’s commitment in an institution. Six years later, James Rippee suffered a stroke and died. Mark’s mother, Lou, now 78, also commenced a long, slow decline in her health.
For eighteen years Mark managed to live at the borders of a peaceful and secure life, given the givens. His mother and his twin sisters (both of whom married) threw themselves into his welfare with the aid of a part-time caregiver. At intervals, and with support, Mark could maintain his own apartments.
The three women kept hope alive. They never lost their love for the invisible man beneath the disfigurement and the ravaged brain.
This is a man who was described as sweet, caring, willing to share whatever he has, and intelligent.–Catherine Rippee-Hanson
That hope eroded with each of the twenty-odd operations on Mark’s brain to scoop out abscesses (Mark has undergone more than fifty operations in all). Each brain surgery eliminated more grey matter. Each elimination weakened Mark Rippee’s capacity to think clearly and increased his tendencies to erratic, threatening behavior.
“He lost control of his emotions, his anger management, his reasoning,” said Linda. “There was no filter. Since the accident, he has fought depression, sleep disorder, and chronic unimaginable pain.”
Mark hallucinated. He heard voices, spoke in the personas of three different people.
“He called Travis Air Force Base several times to report that aliens were attacking,” Linda (by then Linda Privatte) said. “A voice told him to take a fork and pluck my daughter’s eyes out. He chased me with a stun gun, he began to have conversations with himself and 2-3 other people in his head.”
Mark’s psychosis deepened. He barred his mother from his apartment, yelling that he would kill her if she came in—he did not believe it was his mother. The sisters feared he would hurt her. His mother stopped caring for him; after twenty years the stress on her was taking a toll. Shortly afterward Mark was evicted for starting a fire outside his apartment door.
“He was suicidal,” Linda continued. “Mom wrestled a loaded gun from him. He has walked into traffic and tried several times to jump from a moving car. He has tried twice to jump off an overpass twice. He hates us all for saving him.”
Mark Rippee clearly was now beyond the family’s control. A few years earlier, a psychiatrist had diagnosed the young man as afflicted with paranoid schizophrenia. But Mark’s delusions had by then swept him well beyond the capacity to assent to therapeutic treatment or medications.
The sisters began to search for a therapeutic sanctuary and psychiatric care. In doing so they entered a labyrinthine world, a world that often mystifies most Americans, including relatives of the mentally ill: a world of bureaucracies piled upon bureaucracies: municipal and state government, psychiatric hospitals, police departments. A world of strange acronyms (CBT, CET, CMHC, AB, ADC, HHRMAC, SB, SHIP, SHOP—the list extends into the hundreds.) Behind the acronyms stretched a thicket of rules, restrictions, policies, protocols—all designed, it seemed, to pass the buck, evade accountability, and keep the mentally ill as far as possible from reclamatory help.
The years pass, and the trail of the sisters’ efforts grows long, convoluted, chockablock with blind alleys, false leads, rebuffs, personal humiliation. Not even Linda or CJ can fully reconstruct its nightmare skein.
Among the most infernal of the acronyms was HIPAA.
HIPAA: the Health Insurance Portability and Accountability Act. Congress created HIPAA in 1996. Essentially, it is a misbegotten tool for ensuring the informational privacy of a patient in the health-care system. In practice, HIPAA has deprived countless thousands of family members from information vital to helping them understand what is wrong with their loved one, and what to do about it. Leading advocates for mental healthcare reform have insisted that HIPAA be either radically reconceived or scrapped.
HIPAA rules prevented the Rippee family even from being able to confirm that diagnosis of Mark as a paranoid schizophrenic. (It was relayed to them by a mutual friend of the psychiatrist.) Nor could they ascertain his medication needs.
Nor could they—can they—even have him removed from the brutal mercies of the Vacaville streets and placed safely in an institution. They were—are—stymied by the monumentally absurd, fatally ambiguous system of state laws that sprang up at mid-century to counter the unintended consequences of deinstitutionalization. These laws awkwardly attempt to protect the civil rights of mentally disabled people on the street (140,000 as of 2015, as estimated by the Department of Housing and Urban Development) against involuntary commitment to therapeutic care: unless, that is, if the individual can be judged “a danger to self or others.”
The absurdity of this standard radiates from its description: how is it possible to prove that someone is a danger to self or others unless that person commits an act that is—well, one can see where one is going with this. Yet even committing such an act is no guarantee that the perpetrator will be taken under care. Consider the case of—oh, James Mark Rippee: the loaded gun. The stun gun. The threats of suicide. The threats on his mother’s life. The fire he set. The attempted jumps from moving cars and overpasses.
Yet as I write these words, James Mark Rippee remains blindly, madly, on his own; a man, in effect, without a country. Certainly without a country that gives a damn whether he lives or dies, as long as he just stays the hell out of sight.
This is a man who has no safety net at all, but has the right to die on the streets, because he can say, “No.” –Catherine Rippee-Hansen
Linda and Catherine—the latter by now suffering from cancer that has been diagnosed as terminal—turned their energies to another strategy that seemed reasonable: securing hospitalization for Mark as “gravely disabled.”
“Gravely disabled” describes one of the several lurching measures to slap a tourniquet over the worst bleeding wounds of deinstitutionalization. Encoded in two similar bills, AB 1971 and AB 2156, “gravely disabled” is the standard for which the state would intervene in an uncooperative homeless victim’s life and usher that person to shelter and treatment. A person isconsidered gravely disabled if he/she is unable to. provide for basic needs for food, clothing, or shelter because of a mental disorder of impairment such as alcoholism.
That’s the theory, at least.
Linda and Catherine—Linda, after her sister weakened from her cancer—showed up at meetings of the Solano County Board of Supervisors to encourage support passage of AB 1971. They spoke up. They wrote volumes of emails to the committee.
For their troubles, they found that “gravely disabled,” like “danger to self in others,” resides largely in the eye of the beholder: the eye being that of the agency in charge of enforcing it.
“Over the last few weeks alone, I’ve contacted more than forty-five agencies and people, trying to convince them that my brother is the definition of “gravely disabled,” Linda told me recently. “I told them he needs a conservator [a certified adult overseer], based on his family’s situation and the fact that he has been homeless for more than a decade. While I attempted to have patience, I was only told, “Thanks, we’re working on it.”
That was hardly the worst. After one early petitioning visit, Catherine reported that the Board of Supervisors let her know that they consider Mark self-sufficient “if he can eat out of dumpster. They consider him self-reliant if he knows to cover himself with newspapers, or to sleep under a bush to try to stay warm. They consider him self-sufficient if he can panhandle.” (Other relatives of street-people in the state have reported versions of the same response.)
The sisters rejoiced when AB 1971 was passed by the California Assembly, even though it was stipulated only as a five-year pilot program, and only for Los Angeles County, not the entire state.
They rejoiced prematurely. In late August, after a rash of opposition from groups that included, with splendid irony, the California Hospital Associationand the Disability Rights Education and Defense Fund, AB 1971’s sponsors pulled the bill. The Rippees, along with tens of thousands of other Californians struggling to reclaim their helpless loved ones from the California streets, are back where they started:
This is a man who is suffering, body and mind, tormented, and in physical and mental pain every day . . . This is a man who hears voices he hates, like a broken record to the point of pure torment . . . This is a man who had medical doctors abandon him for having angry or unacceptable outbursts . . . This is a man who gets robbed of his income by people who he asks for help to use the ATM . . . This is a man who has family members who under current law cannot make decisions for him to help him . . . — Catherine Rippee-Hanson
With Catherine depleted by her disease and Lou Rippee awash in depression, Linda Privatte struggles on alone to reclaim what is left of her brother.
“I have not been able to as much as look at Mark,” she told me a day or two ago. “I’m feeling guilty about that.”
You are entitled to look away from your brother, Linda (though you won’t, not for long). It is the rest of us who are morally obligated to keep looking into James Mark Rippee’s nearly faceless face, until we accept that this man and all his gravely disabled mentally broken brothers and sisters are our brothers and sisters as well, and that we must not look away until we have inspired or shamed our country into facing them and giving them sanctuary.
For God’s sake, this is a man. He is not invisible. He is not expendable. With any humanity left in us, let us help him. This is a man. This is a man. This is my brother.
Note: on Monday, September 10, I invited two members of the Solano County, CA, Board of Supervisors to respond to comments by CJ Hanson and Linda Privatte that addressed their comments and policy positions. At this writing neither has responded. I will post any comments from them should they come in.
I invite and encourage repostings of this blog entry from other sites, from newspapers and magazines, and from other print and online journals. No further permission is required.
While in Providence to give a talk to the powerful advocacy group, the Mental Health Association of Rhode Island I stopped in for an interview with Molly O’Brien, a young and talented host for the innovative public-affairs webcast GoLocalProv. Here is the clip:
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.
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.
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.)
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.
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:
“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.
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.”
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.
With this message, I will be ceasing new entries on this blog related to my book, NO ONE CARES ABOUT CRAZY PEOPLE. I will leave the blog online for an indefinite period so that I might be of help for those of you looking for connections with others in the sub-universe of mental illness.
I thank the many people who have viewed and responded to my entries over these months. You have been thoughtful, brave, and generous with your responses and ideas regarding mental illness–your own, and those of people whom you love. And your kindhearted reactions to the music, photographs, and stories of and about my sons Dean and Kevin have warmed Honoree and me immeasurably. I hope that my essays and reportage about the scourge of mental illness has brought solace and encouragement.
I suggest that those of you seeking support and a safe place to share your stories will consider the private Facebook site Circle of Comfort and Assistance. Membership requires a sponsor, but I will be happy to consider sponsoring any of you who write to request it. I would like to thank my team of editors and publicists at Hachette, the publisher of NO ONE CARES ABOUT CRAZY PEOPLE, for believing in my book and committing themselves full-out to its success.
I thank my blog administrator Beth Jones for her unfailingly prompt and professional work. And I thank my literary agent, Jim “Agent Jim” Hornfischer, for doing whatever it is that agents do. Seriously, Jim, you are a writer’s dream of an agent and a close friend. Without your encouragement and guidance, my book would never have happened.
The crisis in mental health care is rapidly becoming a featured topic of mainstream journalism.
CBS News has commendably chosen to spotlight this subject as the launch-point of its new experiment in long(er)-form video journalism, making use of its online digital resources. To quote from the network’s announcement: “
CBS Evening News Uncharted: State of Mind” is a new five-part digital series airing in May with new episodes released every Wednesday. The series will examine the state of mental health care in America in conjunction with Mental Health Awareness Month. More than 43 million Americans suffer from mental illness.”
The first episode aired last night, and I repost it here. I was among the contributors, along with Congressman Tim Murphy, former Congressman Patrick Kennedy, and Dr. Glenda Wrenn, the psychiatrist and the director of behavioral health for the Satcher Health Leadership Institute.
Not surprisingly, the most compelling figure in this episode is an embattled mother: Rocky Schwartz, whose two sons are afflicted with chronic mental illness. (The National Alliance on Mental Illness has estimated that 60 percent of Americans suffering from mental illness don’t receive the care they need.)
Battles with un-cooperative health insurance companies have cost Ms. Schwartz and her husband more than $300,000, draining their retirement, college savings, home equity loans, and other personal savings.
The series was assembled by a young production team headed by the gifted and determined associate producer Roman Feeser. I am honored to have been a part of the first and some of the succeeding installments in this bellwether experiment in immersive journalism.
Today I introduce a new, occasional feature to my blog. Please see below:
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 theuniverse 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.”