Tyler West is in a prisoner in the Richard Handlon Correctional Prison in Ionia, Michigan. Mark Rippee, blind and severely disabled, as well as severely mentally ill, is at large on the streets of Vacaville, California, where he has somehow survived for twelve years. He is regularly beaten up and tormented by street punks. His sister Linda Privette told me that in addition to food and clothing, she recently provided him with his eighth walking cane in a twelve-month period–the other seven had been taken from him.
Mark Rippee
You may read about Tyler and Mark, and the grossly inhumane reasons for their medieval persecution, elsewhere on this blog. In brief, each is an unconscionable victim of an American state’s official contempt for the mentally ill, contempt that festers from ignorance, indifference, and a lack of organized public pressure to rescue them and their families from their living hell.
I’m sure that many relatives of the mistreated mentally ill would like to see equal attention devoted to their loved ones. My inadequate response is that there are not enough megabytes in cyberspace to tell the story of every American sufferer of mental illness who has been further victimized by our systems. We need to make mental-health reform a massive civil-rights issue. We need a revolution of conscience.
Tyler West
I am posting below a heartbreaking, eloquent message from Tyler’s adoptive mother, Kimberlee Cooper-West. (She submitted it to the Facebook site Circle of Comfort and Assistance Community, and I reprint it with her permission, and it bears close reading.) You can find comments from Mark Rippee’s sisters, Linda Privette and CJ Hanson, elsewhere on this blog.
KIMBERLEE COOPER-WEST
Wish I had good news to share with ya all’ Love my CCA family! Some have asked, so here it is! Today is our son Tyler’s 20th birthday! We were unable to say Happy Birthday, as he is in lock down for 5 days. We drove a little over an hour, to Richard Handlon Correctional Prison, in Ionia, Michigan. This was last Monday. He is number #113697. We had cake with him. He made a cake from 2 honeybuns, smashed peanut M&Ms(sprinkles) and a melted Snickers bar on top. He is inventive. We sang Happy Birthday to him. He is still our boy! Few mention him. Our heart breaks for what, we have lost. This Will be his 3rd year, away, for his Birthday. Next he will miss Thanksgiving and Christmas. He hasn’t been given counseling, education, training, or the proper medications. He was beat up 4 times, since he was incarceration. Why, couldn’t these mental health professionals, keep him, in an, inpatient psychiatric hospital? For the love of God, there was no good reason, to release our son. His safety compromised. No one responsible. He was nearly shot at for trespassing. He was inpatient, 5 days prior, to his arrest.. He was delusional and hearing voices. What is wrong with this country? Why is there, no long term treatment? This is a brain disease, ya all’ Maybe we should start locking up every Grandma and Grandpa who is violent, or disorderly from Alzheimer’s. Serious mental illness a disease. It is prodromal to Alzheimer’s. Prisons are corporations. Their goal is money. They need prisoners. Caught up in the system, it is a real thingl. We are receiving, a criminal justice system education. Months are now years. One caseworker, Ms. Williams, calls many people names like dumb, retarded, idiots and pedophiles etc. Everyone in Ty’s facility is either mentally ill or autistic. She told Tyler a 19 year old kid, who was only supposed to be there for 2 months, your doing 15 years. It leaves me to wonder, how many, have given up from her words.. He is not even provided an inhaler for asthma, and chronic lung disease. He has autism and a serious mental illness. When he was in school he was never suspended. He was a target for bullies, which was, Our main concern. Incarceration, never crossed our minds. Today on his birthday, I sent his appeal papers, certified to a judge. Hopefully he will give him an apeallate lawyer.
-Catherine Rippee-Hanson, a sister of James Mark Rippee
Mark Rippee – Mug shot taken for falling asleep on the sidewalk. One out of the more than 100 times he has been arrested in the last year alone. Photo Courtesy Catherine Rippee-Hanson.
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.
Mark Rippee – Photo Courtesy Catherine Rippee-Hanson
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
James Mark Rippee – Photo Courtesy Linda Privette
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 two years after his accident. He had calmed down and more lucid although doctors warned that it would not last. Photo Courtesy Catherine Rippee-Hanson.
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.”
And worse.
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.
Mark Rippee Photo Courtesy Catherine Rippee-Hanson who writes, “How my brother looks and lives today 32 years after his accident. Social Services and County services just hold him once in a while for 72 hrs to 2 weeks and then don’t evaluate him, don’t tell the County he needs LPS Conservertorship, and just walk him out to the sidewalk and down a little ways, and leave him standing on the sidewalk…. blind, brain damaged, schizophrenic from the TBI, confused, unable to take care of his own needs and alone. Often in a new town that he is unfamiliar with…. and they don’t even have to tell the family which facility, where he is, or when they released him. He has lost another 30 pounds since this picture was taken… sometimes so weak, he can’t stand up. People beat him up all the time an rob him of everything he has with him. Over and over, over and over. 32 years. When will the State of CA, get it together and change the laws for all Gravely Disabled people?”
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:
Nowhere.
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.
Below is the text of the talk I delivered to the 2018 conference of Pathways to Hope in San Antonio on Friday. Pathways is an exemplary nonprofit outreach organization that has set new standards for reclaiming and treating victims of mental illness and addiction.
Because of a last-minute scheduling conflict, the venue for my talk was shifted from an auditorium furnished with audio-visual recording equipment to one that lacked same.
In one sense, that is a good thing: people who are curious about what I had to say can find out without having to watch the image of my homely mug flapping its gums for half an hour.
In another, it is not so great.
I’d designed this talk as a forceful message—a call to arms, if you like—not only for the Pathways attendees but as a video document that could be distributed on the Internet to advocacy groups around the country, to access stations in towns and cities, to educational and religious groups, to judges and the law-enforcement community, and to state and federal political leaders with the power of policy-setting over our country’s broken mental-healthcare system.
My talk includes a look into the broken lives of two sufferers whose hellish plight epitomizes the rank obscenity of the ignorance, indifference, and neglect at the extreme edges of our judicial and municipal authorities. These victims’ images and encapsulated stories may be found near the end of my talk.
Finally, my remarks conclude with two proposals that will be difficult to achieve and can be fulfilled only via a sustained and broad-based outpouring of activist passion. One proposal is the enshrinement of mental-illness reform as the predominant civil-rights issue of our time. The other is the establishment of a new Cabinet-level federal department: the Department of Mental Healthcare.
I cannot overstate the urgency I feel for the necessity of these goals, and for our sustained witness of those unfortunate people who exemplify the atrocities in our dealings with the insane. Nor can I overstate the frustration I feel (I seldom mention this) at the societal inertia that enshrouds progress and muffles the voices of reform.
I realize that the remarks below are not for everyone. Except that they are.
________________________________________
TEXT OF MY TALK TO THE PATHWAYS TO HOPE CONFERENCE, AUGUST 24, SAN ANTONIO, TEXAS
My wife Honoree and I would like to thank you members of Pathways to Hope for inviting us to this enlightened and important conference.
We are grateful in particular to your inspirational president, Doug Beach; his associate the Rev. Carol Morehead, and their All-star array of board members. Including your great county judge Nelson Wolff, who has so brightly illuminated your path.
You have reached out to a couple of chilly Yankees from the People’s Democratic Republic of Vermont—and got us down here to enjoy a little sunny weather.
Honoree was actually kind of rattled yesterday when I read her the temperature here. I told her not to worry; it would probably warm up.
I hope you know how special you are. Three years ago Pathways to Hope did not exist. Today, you are a piston in a great city’s emergence as a dynamo of human reclamation: the reclamation of the most helpless and vulnerable and overlooked people among us. I speak of those who have been stricken with mental illness.
And I speak of the families and friends who have interrupted their lives and often their livelihoods to protect them.
Something big is going on here in San Antonio and Bexar County. Has been for a while. At about the time Pathways was getting organized, in December 2016, the Boston Globe had this to say about the civic revolution you were joining:
“San Antonio has done in Texas what Massachusetts has not come close to: making mental health care a community priority, a real system built with creativity, humanity, and sustained commitment. A national model, saving lives and money.”
And you are now a central part of this. Your work embodies what has come to be known as “the San Antonio way.”
Let’s examine what “the San Antonio way” means, for the benefit of those who are not aware of it.
It means a great and rare coming together. A spontaneous combustion of civic will that rebukes our long national apathy toward mental health reform. A galvanizing of public agencies and private businesses and healthcare providers and churches and ordinary people—teachers, volunteers, and victims of mental illness themselves. A drive to finally seize control of our broken care and judicial and enforcement systems that too often intervene in the shattered lives of afflicted people only to make things worse.
San Antonio has said “Enough of this! Let us intervene in these systems and rebuild them from the grass roots up!
And let me be more specific still:
In this city it has meant creating special mental health units within the police force: handpicked officers who are rigorously trained to ease themselves into crisis situations and tamp down psychotic behavior, using words and gestures instead of guns. Incredibly important!
It has meant achieving national prominence in the practice of jail diversion. Gilbert Gonzalez and his Bexar County mental health staff have used jail diversion to identify more than 20,000 people with serious mental illness and divert them from jail into treatment. It has saved Bexar County more than fifty million dollars and counting!
That is just incredible! Cost-efficient—and more importantly, humane! Why is the San Antonio Way not the American Way?
I want to help make that happen!
My tools are limited. I’m a bereaved father and a writer—not a policy-maker or a neuroscientist or the leader of a great movement. Just a writer.
But as Elie Weisel said, “Words can sometimes, in moments of grace, attain the quality of deeds.”
So let me pray for grace, and not mince words.
American mental health care today is in a crisis.
I will speak to you of this crisis, but I also want to speak through you . . . to all those Americans, good and solid citizens, who may not yet have been poked and prodded to see our mental illness crisis for what it really is.
It is a crisis that takes many forms:
It is a landscape . . . a landscape of humiliation and grief and ignorance and shame. A hell on earth for too many of the most helpless, the most dispossessed, the most misunderstood, the most feared, and too often the most brutally confined and punished for the crime of existing while insane.
The crisis is a graveyard . . . a graveyard of hope, where we bury our complacent myths of compassion and loving community. These qualities are just not evident in society’s dealings with the mentally ill.
And all too often, it is a literal graveyard—where we bury the bodies of our brothers and sisters—our sons and our daughters—whose lives have been needlessly sacrificed to the appalling indifference and outright cluelessness of the very institutions designed to protect them.
The crisis is a swampland: an economic swampland whose quicksand drains and drains our national treasury. America spends about as much as any country on mental healthcare. Around $230 billion a year, in federal, state, local and private funds. That is nearly twice the amount spent in 2012.
And we spend it worse than just about any country.
The great advocate and my friend Dj Jaffe lays it on the line: our government, spurred by lobbyists, pours money into treating high-functioning patients and on treatments that lack evidence.
I know that Pathways to Hope reaches out beyond the borders of chronic mental illness to help those with behavioral and addictive issues, and simple bad luck. Yet you take care of the core group, the chronically insane, as well.
But at the national level, Jaffe and others have a point.
The powerful blogger Pete Earley adds that we squander even more money by over-spending on emergency systems: jails and prisons, for example. Meanwhile, state mental hospitals are being closed.
Politicians love to build jails because voters think jails keep them safer. Politicians love to close hospitals because voters think this will save them tax money.
This gets it exactly backwards: housing an inmate with mental illness in jail costs $31,000 annually, while state and community mental health services cost about $10,000.
Folks, America is getting fleeced! And America can’t or won’t see it! And so it goes on: a jail is built. A hospital closes. Fewer beds. less care, treatment, and medication. But more cells. And hundreds of thousands of chronically ill people—bipolar and schizophrenia sufferers—go untreated because the money doesn’t stretch to them.
Now I want to move to an area of spending on mental illness that is even less examined than the squandering of public dollars—but is perhaps even more catastrophic and dangerous to our social fabric down at Ground Zero.
I’m talking about the uncounted millions of dollars sacrificed each year by private households. By families. By parents who have no choice but to empty their bank accounts and their life savings, and often quit their jobs, to protect an afflicted child from going under.
I can’t give you statistics. There are no reliable statistics; not yet.
But I can tell you a couple of stories. Stories that represent hundreds of thousands of similar stories. Stories that I use with permission from the mothers and wives who shared them on a private Facebook site.
Here’s one:
“I have no way to go back and detail the cost to me and my family. I can say that the cost was tremendous. The expenses of traveling to the hospitals, the days lost at work because I had to be in the emergency room, or at a treatment team meeting, or in court. These things caused me to lose my job. More than once. So, how do you account for that? Thousands? Tens of thousands? And this is not counting paying for attorneys and doctors, neurologists and neuropsychologists. And medicine! And a locked safe to keep the medicine.
It’s tremendous, just a tremendous reality.”
This mother concludes:
“I retired way early because I am not able to work anymore.”
Here’s another, from the wife of an afflicted husband:
“Many years of paying rent and utilities before finally getting public assistance. Raising his children while his ex-wife recovered from breakdown due to his illness. Full time work cut to very part time, so I could be there for the grandchildren and to advocate endlessly for any kind of help.
Early retirement related to my own stress. Retirement pension a third of what it should have been. Paying for others to clean his apartments. Automobiles totaled at least twice. Expenses to keep him out of jail. Paying others to shovel out his filthy apartments so he doesn’t have his section 8 housing taken away. Vet bills for his dog. Transportation costs numerous times to get him home from yet another place he’s run away to. The long-term financial repercussions have been devastating.”
I think these two examples give us enough to think about. Or should.
So let’s move from the crisis of foolish spending into the crises of our hospitals, our caregivers, and criminal justice system itself.
America harbors two million, three hundred thousand incarcerated citizens at any given time. One-point-three million in state prisons. A little over half are serving time for violent crimes. The rest are in for property theft and drug convictions, and they should be somewhere else. Treatment, supervised community service. More humane, less expensive.
But no: lock ‘em up.
Jails and prisons breed psychosis like the Tropics breed mosquitos and grass breeds ticks. The Kaiser Foundation estimates that about eighteen percent of these populations live with serious mental illness. Serious meaning chronic. Incurable. Leaving the victim essentially helpless. I’m talking about schizophrenia. Bipolar affliction. And the rest of that happy little family. That amounts to three hundred eighty-three thousand insane inmates. Or about ten times the number of patients in our dwindling state hospitals.
I think everybody here can recite the following sentence in their sleep: “We are criminalizing mental illness.”
And yet, with the exceptions of certain oases such as San Antonio, we just keep on doing it.
We buy ever more cells, but never enough, and more solitary confinement: in my opinion, the cruelest, most unethical, most psychologically damaging and most worthless form of legalized torture in our criminal-justice system. Think of the descriptive nicknames: “The box.” “The hole.”
Yet jail inmates, most of whom have not been convicted of anything, keep getting shoved into solitary. Why? Because it’s there. A handy space in an over-crowded jail. And why are jails over-crowded? Mainly because of the stream of mentally ill kids who do not belong there. But are crowded out of hospitals.
Time in the box deepens psychosis. In Florida two years ago, a psychotic young man who’d been in solitary for two years tore off his penis with his bare hands.
One in eight jail prisoners in Florida lives in solitary. One in eight! About twelve thousand total. Out of eighty to a hundred thousand American inmates at any given time.
And the circle goes round and round. And solitary confinement goes on and on and on. Why? Because there is no substantial reform movement. So most Americans hardly ever give it a thought.
Solitary confinement is a national disgrace, and it must be abolished!
A couple more stories now. Stories have a moral force that statistics usually lack.
This from a mother whose brain-damaged son did some time in jail:
“First of all, everyone said that he should not be there. Doctors and other staff. It was known that he needed a real neuro psychological environment. To sum up years of suffering: The state knew, the state hospital knew, and no one did anything until I threatened a lawsuit, even then nothing, until I caught the division in a big lie with a brain injury facility.
The lack of training is unbelievable. State hospital employees don’t keep up with new findings, because they are not encouraged to do so. When I did find a good person, I made sure to tell the top administrator. Then that person was actually told not to talk to me anymore. Yes, buck passing and leaving my son to be secluded for years. I truly believe that the disdain is the word that tells our story. I would say to staff, ‘How can you sleep at night?’”
Listen to this message from the mother of a young psychotic son:
“One of the most shocking remarks said to me was when I tried to get our local hospital psych ward to keep our son over the 72-hour hold period. He was psychotic and refusing treatment. The nurse I pleaded with said, ‘You are his mother and he has a right to be crazy if he chooses.’”
This was said by a professional nurse in a hospital psychiatric ward. How many of you have heard variations of this remark?
Here’s another testimony from the mother of a psychotic child:
“The hotline sent two police officers to my house. When I asked them how they would approach the situation, one of the officers said, ‘If I feel threatened, I will shoot him.’ Based on this interaction, my husband and I declined their offer to do a ‘wellness check’ on my son.”
I will close off with two cases that have literally kept me awake at night. Because I cannot square either of them with any vision of an enlightened and just America.
Tyler West of Fruitport, Michigan
Youknow about Tyler if you‘ve been reading this blog. I’ve written several times about him and his family. Tyler is the adopted son of Kimberlee and Dan West, two of the best and most civic-minded people I know.
Tyler was already suffering from brain-related afflictions when the Wests took him in as a small child. He is a small and dark-skinned and sweet-natured young man, and he has cognitive processing problems, including with language that is spoken to him. Later he was diagnosed with schizophrenia and autism.
These traits made him a target for repeated beatings in his childhood. Yet Tyler remained gentle, and developed talents for music composition and computer programming. He carried a comic doll around with him.
Still, his symptoms of psychosis deepened and he had trouble grasping reality. Two years ago, when Tyler was 16, he disappeared for about eleven hours with a 14-year-old girl. They both denied having sex, and no traces of semen were found. Still, a judged sentenced Tyler to five days in jail on a charge of statutory rape.
This sentence put Tyler in the crosshairs of local law enforcement. I will skip over several harmless misdemeanors and suicide attempts, not to mention futile efforts to have him civilly committed in a hospital or care center. Bed shortage, you see.
But I will tell you that Tyler’s brain continued to decompose. Disaster struck on a February night in 2017, when Tyler, in a mild psychotic state, wandered across his family’s lawn to a neighbor’s house, opened an unlocked door, and fell asleep on a sofa.
The neighbors discovered him and had him arrested on a charge of home invasion.
Tyler West entered the Muskegon County Jail on February 19, 2017, until June 29, 2018. Sixteen months, as his hearing date got postponement after postponement, During that time, he suffered concussions from at least four beatings from violent fellow inmates. He did stretches in solitary, and could be heard beating his head against a wall. He was deprived of regular medication.
Last June, Tyler finally got his sentencing hearing. The judge moved him to quarantine in a reception center for a month. He is now an inmate at the Richard A. Handlon Correctional Facility in Ionia, Michigan. Length of stay, undetermined. But he may be facing an 18-month sex offender class.
The whereabouts of Tyler’s comic doll are not known.
Okay, I have saved the worst for last. I ask you to please brace yourselves.
James Mark Rippee
This is James Mark Rippee. He has lived on the streets of Vacaville, California, for nearly twelve years. He is schizophrenic. Thirty-one years ago, Mark Rippee suffered a motorcycle accident that left him blind, with head trauma, brain loss, and a shattered right leg that is kept in place with a metal rod. He has endured more than fifty surgeries. He is beaten and robbed regularly.
Mark Rippee’s brother and twin sisters cared for him for eighteen years, until they could no longer control his violent behavior. They have since petitioned every service agency available to them for help get Mark into a protected and therapeutic environment. Or at least a legal guardian, someone who would look after his finances and his needs for shelter, and food, and medical care, and safety.
Every agency has told them “No.”
Why?
The bedrock answer is that Mark Rippee has his RIGHTS!
He enjoys the “right,” the civil “right,” to refuse care and treatment. And in his disordered, shrunken state of reasoning, he exercises that right.
And that is all the caring agencies need to hear in order to turn their backs on this hopelessly brain-damaged man.
Here is Mark’s brother, Joseph Privatte.
“I have contacted lawyers, Adult Protective Services, The Public Defender, The Public Guardians Office, the police and fire departments, Mission Solano, five hospitals, several case workers, Laurel Creek Mental Health, the Vacaville Homeless Roundtable, the Solano County Health and Social Services Administration, the Vacaville mayor . . .”
..and he goes on. I’ve left out about half the agencies he has contacted.
And now listen to Mark’s sister, CJ Hanson, after she attended a meeting of the Solano County Board of Supervisors. They were seeking to have Mark designated as “gravely disabled” so that he could be involuntarily committed and receive protection from the county.
California law defines “gravely disabled as being unable to provide for one’s basic personal needs for food, clothing, or shelter.
The siblings’ mission failed. The Board of Supervisors, CJ told me in an email, “consider him 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.”
CJ wants to get the state to re-define what it means to be Gravely Disabled. “If my brother is not aware or capable of seeking medical attention, then he is not capable of being self-sufficient. The criteria now in use is archaic! It is disgusting! It is inhumane!”
And it is likely to remain in use for the foreseeable future.
I can’t predict the fate of Tyler West or James Mark Rippee. Or the tens of thousands of Tyler Wests and James Mark Rippees who suffer atrocities today because institutions of justice and reclamation have turned their backs. I’ll repeat it: suffer atrocities, in the landscape of ignorance and shame, the graveyard of hope, or the swampland of wasted resources, that make you wonder at times how far we have really progressed from the era of Bedlam Asylum in the London of the Fourteenth Century, where torture, demonic superstition, and shackles ruled the brief lives of the so-called idiots and lunatics and morons trapped inside its filthy cells.
I am tired of wondering. I am tired of passively complaining. I am tired of giving talks around the country that aim to stimulate the passion for reform, yet result generally in kindhearted applause and handshakes.
I am angry and frustrated, and I want action! I have chosen this gathering of Pathways to Hope as the occasion for two specific action proposals that I am willing to fight for, if enough committed people will rally along with me.
Proposal One is my call for the establishment of a federal Cabinet-level department, the Department of Mental Illness!
This Department will have broad powers of oversight and policymaking into federal, state and county levels of criminal justice: establishing and enforcing standards of education in mental illness among judges. Ensuring speedy trials for jail inmates and accountability in sentencing. Demanding accountability from jails in consistent, humane treatment and medication of inmates in psychosis.
And pursuing, with remorseless intent, the agenda of wiping out the great moral blight that continues to infect our jails, our prisons, and our claim as a civilized nation. I am talking about solitary confinement. It destroys minds! It does not rehabilitate! It is bestial! It must go!
That is Proposal One. A Cabinet-level Department of Mental Illness. Here is Proposal Two:
We must recognize mental healthcare for what it so clearly is: the civil rights issue of our time!
I’m not talking about symposia or a holiday or public-service commercials. I am talking about a national movement! Built around a charismatic figurehead. Someone who can ignite and fuel an ongoing national movement. A galvanizing male or female member of Congress, perhaps. A retired statesman. A member of the clergy. A leader from the world of business. Someone from the ranks of Project Hope. Or someone we have not yet heard of.
It is a civil right to live with hope and dignity. Other movements have recognized that and have broken through. Now it is our turn.
The novel was an indictment of cruelties visited upon American migrant farmworkers, traveling west to California to find survival work in the Great Depression.
One of its immortal passages described the shock—the sense of violation—that these starving migrant workers felt as they looked upon acres and acres of rich ripe fruits and vegetables that had been strewn across the land to rot, because the owners did not want to pay decent wages to the migrants for harvesting them.
Here is what Steinbeck wrote:
“There is a crime here that goes beyond denunciation. There is a sorrow here that weeping cannot symbolize. There is a failure here that topples all our successes.”
Do those lines remind you of anything going on today? We have work to do; the work of reclamation. Let’s get to it. Thank you.
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.
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.
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Please watch the video below to learn more about Mr. Greene and share his story with friends.
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
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.
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.”
–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.
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.
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!)
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 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.”
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!
Near the beginning of my recently published book about mental illness, “No One Cares About Crazy People,” I write: 
