The ravages of mental illness continue to flood every corner of society. Coverage of this atrocity has improved in quantity and sophistication in the last quarter-century–but to what end? Policy-makers, law enforcement and public opinion remain largely indifferent to meaningful education and reform. Mis-diagnoses, non-diagnoses, incarceration, hospital indifference, and violent deaths of people in psychosis surge on, gathering speed. And no one is at the wheel.
This strongly observed and written story by Hannah Dreier of TheWashington Post throws light into an especially neglected precinct: Poor black families, and the mentally afflicted children within those families. It provides a glimpse of the day-to-day crises of a divorced Black mother, Kelli, and her two sons–one of whom, the 11-year-old Ahav, is diagnosed with schizophrenia.
You may read Dreier’s piece as simply a searing journey into the wilderness of one family’s mental-illness misery, and of the heroic efforts of Kelli to keep Ahav safe. A closer reading reveals a miasma of bureaucratic obstacles, therapeutic failure, option-choking poverty, and the constant dread of trigger-happy law enforcement that imprison tens of thousands of families such as Kelli’s in the rusted chains of our failed mental healthcare system.
Not talking about the caucus winner here. Talking about a pair of grass-roots Iowans, my friends Leslie and Scott Carpenter, mental-health advocates who fit every definition of “everyday heroes.”
The parents of a schizophrenia-afflicted son brutalized by our broken treatment systems, Leslie and Scott have carried on a tireless crusade for reform that has extended more than ten years. Often they struggled in obscurity, and against indifference, until the Iowa caucuses brought the Democratic presidential candidates to their doorstep.
Their work in spreading the reform messages directly to the candidates has placed them at the center of a widening national movement to end the many atrocities of our treatment and criminal-justice systems, and the candidates are listening. I will let Leslie pick up the story here, and close by saying that these two luminous people embody the concept of “hope.”
A ruling by the Vermont Supreme Court, in my home state, has decided in favor of a patient suffering from schizophrenia who does not want medication or treatment. It’s a supremely vexing question, but I think the court erred.
The rock has rolled downhill again. The Sisyphean slog toward rational mental healthcare once more has been flattened under the weight of judicial folly.
On Friday, November 15, the Vermont Supreme Court ruled in favor of a plaintiff suffering from years of diagnosed schizophrenia—a person [mark this word] with a history of episodic violence and aggression, and periods of catatonia—who had asked not to be medicated against his will.
The ruling means that this plaintiff has likely ingested his last medical stabilizer against psychotic episodes—the final internal barrier to hallucination, delusional thinking, disordered speech and movement; and, in rare cases, violence to themselves and/or others. (It’s also likely that he wrote his request while stabilized, an irony that I will examine later.)
According to the court decision itself, as reported in the Rutland (VT) Herald, this person’s propensity to violent and aggressive acts while in the grip of psychosis is not merely theoretical. He has committed such acts before.
The court’s wording: “Patient has a history of unpredictable violence and unprovoked aggression toward hospital and treatment facility staff, police and others.”
Given the annals of psychiatric case history, there is little reason to doubt that, when seized by psychosis in the future, he will do so again.
My own family’s experiences testify to this likelihood. Our younger son Kevin was diagnosed as schizophrenic in 2003. He rejected his antipsychotic medications in 2005, and in July of that year, a week before his 21 st birthday, Kevin hanged himself in the basement of our Middlebury home.
It’s essential to pause here and parse the meaning of “person.”
The man in question—the core person—is not inherently a criminal, just as life-affirming Kevin was not inherently suicidal. The authentic person is described as intelligent, a reader, a researcher of information. It is the incurable disease itself, which invaded the person’s brain and has rendered his life hellish since the age of 12, that bears responsibility for his aberrant impulses.
The basis for the court’s ruling seems to be an “advance directive” created and signed by the patient in 2017, in which he stated that he wanted no neuroleptics or antipsychotics, no psychiatric drugs, “no medications I do not desire at the time.” Advance directives are documents that state the signatory’s medical-care wishes in the event the writer has lost the capacity to make such decisions on his own.
I believe that the Vermont Supreme Court’s ruling in this case was misguided. I believe it poses risks to people who come in contact with the plaintiff (or more accurately, with his psychosis); risks to the plaintiff himself; and risks as a dangerous precedent, for the same general reasons.
I don’t write these words lightly. Severe mental illness is a uniquely accursed affliction that defeats good intentions and pits legitimate purposes against legitimate purposes, as in this case. No one wants to live in a society that withholds a person’s right to control her medical destiny.
But there is that stubborn word again: “person.” It’s revealing that the plaintiff wrote and signed his advance directive in 2017, a period in which he was in the care of the Brattleboro Retreat for a sixth time and was being administered the antipsychotic medication compound trifluoromethyl phenothiazine. Presumably he was in relative control of his thoughts and actions. If so, he was in (relative) control exactly because of the medication. This is the irony I promised earlier.
I write “relative” control because a frequent traveling companion of schizophrenia is anosognosia—a medical term for “lack of insight.” Anosognosia shows up in about half of all schizophrenia cases. Its effect is to convince the sufferer that everything is fine. There is no disease. And so, no need for medications and their often harsh side effects.
Ultimately, the Vermont Supreme Court decision was grounded in “rights”: the “right” of a citizen to be free from involuntary medical treatment if he so decides. But what if the decider is not the citizen but the disease itself? In my clearly non-judicial opinion, the “right” in such a case must default to the core person: the entity who will be among those harmed, perhaps fatally, by the disease’s “harm to self or others.”
Vermont, and the nation, need to drastically reconsider the balance of legitimate purposes in granting medical immunity to people who are incapable of judging that right in a rational way. The entire question of “rights” in this context is an artifact of overzealous liberal activism in the 1960’s. Vermont is a fairly liberal state, and I personally hold to liberal views. But this is not really a question of ideology. It is a question of common sense.
As the father of two sons with schizophrenia, author Ron Powers is familiar with the pain and frustration of dealing with a chronic, incurable disease of the brain.
Powers’ younger son, Kevin, was a talented musician whose struggles with schizophrenia began at age 17. Just before his 21st birthday, in 2005, Kevin took his own life.
A few years later, Powers’ older son, Dean, started experiencing symptoms of schizophrenia and had a psychotic break.
Ron Powers, a Pulitzer Prize-winning journalist and media critic, wrote Flags of our Fathers, which was adapted into a film by Clint Eastwood.Sarah Junek/Hachette Books
“There is no greater … feeling of helplessness than to watch two beloved sons deteriorate before [your] eyes, not knowing what to do to bring them back,” Powers tells Fresh Air‘s Terry Gross.
Powers’ new book, No One Cares About Crazy People, is both a memoir about his sons and a history of how the mentally ill have been treated medically, legally and socially. Although Dean is now medicated and doing well, Powers notes that many people with schizophrenia don’t receive the treatment they need — in part because they often don’t believe they are ill.
“This unwillingness to believe that one is afflicted has led to tremendous problems,” Powers says. “To force that person into being helped is a violation of his or her civil rights … and the law may penalize the care workers who give [people with schizophrenia] medications or admit them to a hospital against their will. … That is the great reigning Catch-22 of the way our society deals — or fails to deal — with schizophrenia.”
On why symptoms of schizophrenia often surface around the age of 17
It has to do with the maturation of the brain. … In order to start functioning as an adult brain, the brain must undergo a period of what is called “synaptic pruning,” really a cleansing away of all of the neurons, all of the connective material that is built up since infancy. That is no longer useful and it’s quickly replaced, but there is a period of vacancy, almost, in which the brain is very vulnerable to any kind of disruption. It’s unprotected, and this is the period of life, roughly clustered around the age of 17, when the disease can make its appearance.
On how denial impacted his sons’ treatment
Each of our sons was afflicted with this companion condition called anosognosia. … [It’s] defined as an inability to understand the self, a blockage of insight into what is happening. Many, perhaps most, of schizophrenic victims deny that they are schizophrenic, and this has led to many important social and legal and ideological conflicts. … The denial that took place, with Kevin the symptoms occurred before he reached the age of 18, meaning he could be treated without his consent. He was a juvenile and he was taken into care and custody without his consent.
Dean was over the age [of consent] and resisted treatment, denied that he needed to be treated, and it was only after a series of psychotic breaks that he came around to the understanding that he needed help.
Dean is accountable to a clinician. He has to report; there is a record of him taking his meds. Kevin was taking oral medication only on his own consent and we weren’t sophisticated enough to perceive that instead of taking the meds Kevin might be hiding the meds. This happened in the later stages of his descent and it was after he finally announced to us, “I’m fine. I’m healed. I’m OK, I’m not going to take my pills.”
Within a few months after that, Kevin hanged himself in our basement.
On trying to understand the degree of Kevin’s suffering
He was hearing voices. We know that. We could watch him through the kitchen window as he walked out of the house and toward the hot tub that he loved to sit in. We could see him climb into the hot tub and sit down, his profile was to us, and we could see him laugh. He would laugh, he would giggle. … Something was talking to him, and I think because of that happy response we saw from him we told ourselves that he had made friends with the voices, that the voices were beckoning him, they were coaxing him into their world, and that he finally decided to join them. I don’t know whether that’s true or not. I’ll tell you that it got me through the first five years of trying to figure out where Kevin’s mind had gone.
On still having dreams of Kevin
In the dreams Kevin is alive. He’s a small boy, around 10, 11, 12 years old. We know he’s a gifted guitar player, but he’s stopped playing his guitar, and he won’t start again. The odd thing is that both Honoree and I have had this dream. It might be a metaphor for his death, but he shows up, almost every night, as I say. … I’m glad to see him. In the dreams he is etched so perfectly. The reality of him, the physical sharp-focused reality of Kevin is overwhelming and all of his kindness and his goodness are there.
The advent of the so-called “wonder drugs” like Thorazine … were touted as cures for schizophrenia — they weren’t. At best they were cures for symptoms. But on the strength of Thorazine and its great consumer success and promise, President Kennedy, seeking to do the right thing, signed legislation … in 1963 … that authorized the emptying out of mental asylums and the transferring of their patients, their inmates, hopefully into community care centers that were going to be built around the country to receive them.
Deinstitutionalization was a catastrophic social experiment, one of the worst we’ve ever had. It ended up creating the [mentally ill] homeless population that still plagues us today.
The second terrible effect of deinstitutionalization was that many of the people never ended up in the community centers. The government ran out of money. They couldn’t build enough to contain this outflow of patients, so they ended up on the streets, and from the streets they ended up in prison. Many of them. Today our prisons are overflowing with the mentally ill. Prisons are our de facto mental hospitals.
Here is the most heartwarming hope-and-love-saturated video I have ever seen from the annals of mental illness. Ray Weaver is an American singer-songwriter living in Denmark. His gifted daughter Savannah Esperson Weaver, living in America, has for years struggled with afflictions variously diagnosed as bipolar disorder; borderline personality disorder; and, ultimately, schizophrenia. Ray made many trips from Europe to America to visit and support his valiant daughter. Just a few weeks ago, consummating months of treatment and medications, Savannah’s doctors approved her request to be with her beloved father. Here they are, reunited in song: the Townes Van Zandt ballad, “If I Needed You, Would You Come to Me?”
By Aimee Green | The Oregonian/OregonLive email@example.com
The Oregon Court of Appeals on Wednesday reversed a southern Oregon judge’s decision to commit a man to the state psychiatric hospital and revoke his gun ownership rights after he’d threatened to kill strangers who he believed were watching him through power lines and robotic birds.
The man’s case illustrates Oregon’s high legal bar for forcing people with mental illness into receiving treatment and forbidding them from having guns.
The case also highlights battling ideologies: One argues that people who have been diagnosed with mental illness and have threatened to kill others should be sent to the state hospital for involuntary treatment for up to 180 days. The other argues that forcing vulnerable people to receive treatment without significant evidence they’re truly a danger violates their civil liberties and can have devastating effects on them.
The man in this case was identified in court papers only as 43-year-old “J.P.”
Alexander Cambier, a Portland public defender who represented J.P.’s interests before the Appeals Court, said committing someone for up to six months represents a significant “deprivation of liberty” that must be backed up by evidence of the person’s future dangerousness.
“In a case like this the state is seeking to put someone in a hospital room — which can look a lot like a jail cell, i.e. locked doors and bars over the windows — not because they have actually hurt someone but because the state is predicting that they will hurt someone in the future,” Cambier told The Oregonian/OregonLive.
The Appeals Court said prosecutors didn’t legal justify the case against J.P. because he didn’t have the means to actually acquire a gun and probably didn’t have the physical strength to hang people as he had threatened.
J.P. had been diagnosed with schizophrenia and a supervisor at a mental health clinic was worried he’d act on his delusions to “kill” or “hang” strangers who he thought were members of the mafia, according to an Appeals Court summary of the case.
J.P.’s encounter with the mental health system began after his mother became gravely concerned when he sent her photos he took of a man at a bus stop and people in cars because he thought they were monitoring him, according to the summary. He also said he thought the roofers working on the house across the street from his grown daughter’s home were in on it, too.
Within a few weeks, he called his mother and announced he was ready to act, stating: “I’m ready to get these people. Whatever means necessary, I need to do this today,” according to the summary.
He added: “I don’t care how I have to do it. I’ll kill them. I’ll hang them. I’ll do whatever I have to. I need to deal with this.”
During a hearing, Douglas County Circuit Judge William Marshall said he considered J.P. a “real danger … to other people,” in part because he’d at one point successfully convinced his daughter to briefly loan him an unloaded shotgun.
“This illness is long-term,” Marshall said. “It’s not disappearing. It’s continuing to invade him.”
But in reversing Marshall’s ruling, the Appeals Court noted there was no evidence that J.P. followed his “verbal threats” with an “overt act” that indicated he was “highly likely” to end someone’s life.
“There was no evidence in the record … that the threat was anything more than the result of his delusions and agitation,” the Appeals Court wrote.
The court noted several other cases in which other people didn’t meet that bar, including a woman who had made threats to kill her neighbor’s children and put their heads on her fence and a man who threatened to kill a police officer by telling him he was a “dead man walking.”
It also noted the case of a woman who it determined had been lawfully committed: She fired a bullet into the wall dividing her apartment from her neighbor’s. That proved she was highly likely to be dangerous in the future, the Appeals Court said.
J.P., the man at the center of Wednesday’s ruling, was civilly committed in October 2017. He has long since left the state hospital. But the ruling has the effect of restoring his right to possess or own guns. Such a prohibition would have lasted indefinitely unless he successfully convinced the state’s Psychiatric Security Review Board to restore those rights.
The opinion was made by a three-judge panel of the Appeals Court: Rex Armstrong, Douglas Tookey and Scott Shorr. Read the opinion here.
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.
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.
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.
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
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.
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.
“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.
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.
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.”
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.
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.
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.
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.