I’ve never felt more engulfed in waves of simultaneous despair and hope than I felt as I read “‘I Couldn’t Do Anything’: The Virus and an E.R. Doctor’s Suicide” in the New York Times last Saturday. Dr. Lorna Breen, the emergency-department supervisor at New York-Presbyterian Allen Hospital who took her life on April 26, embodied all the good, all the agape (selfless unconditional love), all the standards of learning, noble achievement, selflessness, and joy that Americans once congratulated themselves on (uniquely) possessing.
America is crumbling before our eyes. There seems to be no counterforce. As white nationalists brandish powerful weapons on the streets and in statehouses, and fire them into crowds and churches, the left . . . topples statues. Statues on both sides of our historic ideological divide.
Dr. Breen trumpeted no ideology, but she did something more than topple statues. Something noble and life-affirming. She was part of a nationwide, overwhelmed band of sisters and brothers—emergency workers—who do the brutal work of saving plague-afflicted lives. She paid for her agape with fatigue, despair, the vile illness that gripped her as it has gripped so many of her fellow front-line workers. Ultimately she paid with her life, at her own loving hands.
Americans who consider themselves “progressive”—well, all Americans—need to get beyond the narcissistic pleasures of virtue-signaling. As we tilt Quixote-like at our statues, we might do well to recall a couple of ideas from Abraham Lincoln—one of whose statues is on the good-liberal removal list. Lincoln’s ideas apply to Dr. Breen and her colleagues, and to our pathways of response to her sacrifice.
At Gettysburg in November 1863 Lincoln said: “Now we are engaged in a great civil war, testing whether that nation, or any nation so conceived and so dedicated, can long endure.” He said: “It is for us the living . . . to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced.” He said: “It is rather for us to be here dedicated to the great task remaining before us–that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion.”
And now we are engaged in a new civil war. We are in a new test—several tests—to see whether our nation can long endure. Dr. Lorna Breen and her sisters and brothers have fought and too often died while struggling with their unfinished work against one collateral facet of this war: the national political indifference to the coronavirus plague.
We the living can advance that unfinished work by building on the legacy of Dr. Lorna Breen.
There are so many ways to pursue this work: ways that require commitment and courage and patience on a scale that most of us have never confronted.
Senator Sanders, as I indicated in my previous blog, I have admired and supported your political career. And as I went on to say, I believe you are dead wrong, dangerously wrong, on three foundational elements of your mental healthcare platform.
These elements involve (1) your belief that treatment for people in psychosis must be voluntary; (2) your opposition to reforms that would alleviate the severe crisis in available beds for such victims; and (3) your refusal to support relief from the oppressive “HIPAA” restrictions on the release of information, to families, concerning their afflicted loved ones’ medical conditions and plans for continued treatment. I have explained my reasons for objecting to your positions on these issues in my February 14 blog.
Now comes the corroborating voice of Susan Inman, an eloquent advocate, and the mother of a daughter suffering from schizophrenia. Inman is the author of the best-selling, highly regarded memoir, After Her Brain Broke.
Here is what Susan Inman–writing out of direct, harrowing experience–has to say about the destructiveness that is perpetuated by your continuing embrace of these outmoded and logically preposterous impediments to reclamation. Her essay first appeared on the website Mind You: Reflections on Mental Illness, Mental Health and Life. Please give some serious thought to the wishes of those of us who have formed our opinions from direct experience instead of sterile ideology.
This fine piece by Jocelyn Wiener appears in the February 26 edition of CalMatters, a probing independent journal based in Sacramento, California. Yet the horrific saga of Mark Rippee, the symbol of mental healthcare decadence in America, a bit of human wreckage stranded on the streets of Vacaville for 13 years, remains mostly hidden in plain sight.
For God’s sake, investigators, do your duty. Mark is running out of time.
For those reporters interested in a quick backgrounding of Mark Rippee’s story, please check my blog, noonecaresaboutcrazypeople.com. You will find entries about him here, here, here, and here.
You may also review the Facebook thread Mark of Vacaville, kept by Mark’s sister Catherine Hanson.
Secrecy, official neglect, pain, petty violence and thievery have been the daily portion for Mark Rippee during his ghastly, 13-year ordeal of homelessness on the streets of Vacaville, California.
Thanks to the heroic determination of his sisters Catherine Henson and Linda Rippee, a groundswell of activism is at last forming in his defense. Please, no matter what state you live in, sign and return this petition below to help bring a measure of humanity to this terribly violated man!
My brother, James Mark Rippee, who is blind, brain-damaged from a traumatic brain injury (TBI), physically disabled, and has Schizophrenia and Anosognosia. (Lack of Insight to his own serious mental illness.) He has been homeless for 13 years living on the streets of Solano County in California.
I previously authored a petition two years ago in support of AB 1971 in California – legislation that was pulled by the authors after I garnered 82,000 signatures through my petition which was hosted by Care2, due to “poison pill” amendments forced into the Bill to change the definition of “Gravely Disabled” to include “lack of capacity and medical need” as a criteria for involuntary treatment and placement or LPS Conservatorship.
I had made my brother the face of that bill. After continuing our efforts to get him help, services, treatment or placement and failing with our County of Solano in California who have been negligent in their duty to start an LPS Conservatorship Investigation and process, and denial of participation with Laura’s Law, and even denial of Mental Health Services!
We continued to speak at Solano County Board of Supervisors’ meetings and inform all County officials, Health & Human Services, Social Services including Adult Protective Services that he was in danger – in particular to being struck by a vehicle or causing an accident because he literally has no eyes.
In September of 2019, he once again fell into traffic and was struck by a car. Because he has anosognosia and is not of sound mind, when EMTs were called to the scene – he denied needing help and was left on the sidewalk -injured, in pain and crying.
Eventually, he was found by our family two weeks later with life-threatening injuries sustained in that accident. He had emergency brain surgery and was in the hospital for 3 weeks. Although clearly delusional the psychiatrists there refused to declare him with diminished capacity which would have resulted in a 51/50 hold. Even though they would not place a hold on him for his own protection – they did continue to inject him throughout his stay with antipsychotic medications.
Upon their decision to release him and after much protest and contact from the community and mental health advocates from across the nation – accusing them of “patient-dumping” – they decided to transfer him to a Senior Board & Care home (he is not yet a senior) for 30 days under the guise of a “Safe-Discharge Plan.”
Because the Board & Care home was ill-equipped to deal with a person with serious mental illness and his delusional behavior even though Kaiser continued prescribing him antipsychotic medications — they opened the front door and let a blind, severely and gravely disabled man walk away from the facility in an unfamiliar city. Our family lost contact with him as he fled from his delusions to another city for a month.
Through many attempts to get the County to take appropriate action for him and our family – the County of Solano has continued to fail– at this point clearly negligently and with intent to discriminate.
On February 12, 2020, James Mark Rippee was again struck by a vehicle – this time so critically injured that it will take months for him to recover – if he does. He is in Critical Condition with a Fractured Skull & Brain Bleed, Facial Lacerations & Bruises covering his body, Lung Contusions, a severely Dislocated Shoulder, a Shattered Elbow, Removal of the Metal Rod running the entire length of his leg which had been holding his leg together for 34 years and was bent in the accident, a shattered Tibia, and more. It is expected that many more surgeries will be needed and months in the hospital.
At the time of this writing, the hospital is once again denying that he has diminished capacity and has taken no action to allow family members any rights to know about the details of his condition (HIPAA) and even though my brother is incoherent and sedated – they will not allow family members who love him and know what is best for him to make any medical decisions and are ignoring their duty to declare him with diminished capacity in the face of their previous records on him from 4 months ago.
Office of the Lieutenant Governor of California / Public domain
While we hold the County of Solano and many officials, departments and agencies responsible for not preventing this second tragedy that we told them would happen – We also demand that the State of California and in particular – Governor, Gavin Newsom – whom we have previously attempted to contact – PAY ATTENTION TO THIS SITUATION and ACT accordingly!
Our family has contacted many, many politicians at the County, State, and Federal levels for several years! We have testified at the California State Capitol for several proposed legislation regarding Grave Disability, Conservatorship, and pleaded with all to help our family.
We DEMAND attention from Governor Gavin Newsom, who claims to hold in such regard the need to help the Seriously Mentally Ill and the Homeless! NOW!
The voices of the growing grass-roots movement to reform mental healthcare are at last rallying to demand justice for perhaps the most dispossessed victim in America.
In a town in America, here in the Twenty-first century, a man has been left to die. A maimed and blind and deeply mentally ill man.
He has been left to die in this town for thirteen years. Right out in public, on the city streets, where everybody can see him. And beat him and rob him when they feel like it. And nobody with any statutory power over his predicament seems to give a damn.
A technical clarification: this man is not on the streets of Vacaville as I write these words. He is in critical condition in a hospital, bandaged and splinted and broken after being struck by a car at a traffic intersection at dusk on February 12. (It is the second time this man has been hit.)
His injuries include a fractured skull and bleeding from the brain, facial lacerations, lung contusions, a dislocated shoulder, a shattered elbow, a decimated leg, and bruises that blanket his body.
Mark Rippee
But it’s a safe bet that after the surgeons have him all fixed up—it could take months—he will be ushered back out onto the streets, where the cars he can’t see and the thugs whom he cannot fend off will help him resume his accustomed existence.
The man has a name: (James) Mark Rippee. The city has a name: Vacaville, California. The situation has a name: depraved indifference to the survival of a human being.
I just made that name up. Actually, I borrowed it from legal parlance. Its definition: “Conduct which is so reckless, wanton and deficient and lacking in regard for the lives of others as to warrant the same culpability as the individual who actually commits a crime.”
Here is the crime that Mark Rippee has committed: the crime of existing while crippled, blind, and insane. Are there any questions?
I’m sure there are lots of questions. I have lots of questions myself. Or I used to. I have written so often about Mark Rippee since I became aware of his plight that the words I write about him seem to turn to dust. I have written blog posts about him here and here and here. I have written speeches to mental-health reform groups in which I summarize his story. I have written directly to media outlets, to lawmakers, and to civic leaders in Vacaville and elsewhere. And the streets still claim Mark Rippee.
The bare-bones story—as it were—is that Mark Rippee was involved in a terrible motorcycle crash in June 1987, at age 24, that left him nearly dead, with bits of his brain scattered near the site, his eyes and his right leg destroyed. You can read the details in my links.
Somehow he survived. But over the years, his traumatic brain injury (TBI) has morphed into schizophrenic-like thoughts and behavior. His power to reason vanished. His mother and his twin sisters Linda Privatte and Catherine J. Rippee-Hanson tended him in the family household for eighteen years, until his deformed brain turned him into a raging menace. He left the household and has made his way on the streets, where his sisters—both of whom have developed serious illnesses of their own—bring him food, clothing, canes. Vandals keep stealing all of it, and often also the money given him for food and other needs.
Why doesn’t somebody rescue Mark Rippee? Why doesn’t some agency . . . why doesn’t . . .
Those are very good questions, and I’m glad you asked them. But the answers are buried within the folds of incoherence that comprise so much of the American mental healthcare system. Or systems. Or “systems.”
Mark Rippee is a victim of a perfect storm of gothic bureaucracy. The pertinent bureaucrats at Solano County and California state levels have exhibited no discernible interest in finding any way to counter the bureaucratic snafus with a humane solution that would get this man into supervised care and treatment.
One might even say that they are hiding behind a “humane solution” that actually exists. This solution would begin with a declaration from a psychiatrist that Mark Rippee’s accident left his brain with “diminished capacity.” This ruling would permit Mark’s family to place him in an appropriate facility and/or to establish a conservatorship that would give them discretion over his affairs, including psychiatric care.
No dice: hospital psychiatrists have consistently, and weirdly, denied that Mark Rippee has “diminished capacity.”
And the reasoning behind this confounding denial? Well, it’s none of your business what the reasoning is. The hospital is protecting Mark Rippee’s rights, you see. Protecting them by way of the cartoonish Health Insurance Portability and Accountability Act. HIPAA was designed to ensure a patient’s “privacy.” “Privacy” that prohibits even family members from learning the medical procedures and condition of a patient. There’s an irony there, in case you missed it.
Catherine and Linda have fought tooth and claw, over parts of three decades, to tear through the self-serving laws and policies that keep Mark in a near-feral state. Two years ago, Catherine plunged into work on a petition in support of a California bill known as AB 1971. AB 1971 would have expanded the existing definition of “gravely disabled” to include medical treatment for a patient if the lack of treatment “may result in substantial physical harm or death.” It would have secured treatment for Mark Rippee. Catherine collected 82,000 signatures in favor of the petition.
In April 2018, the Disability Rights Education and Defense Fund, one of several lobbies that oppose conservatorship and deny other needs of the mentally ill, signaled that it disapproved of AB 1971. The California Hospital Association also weighed in on the negative side.
AB 1971’s sponsors pulled the bill.
The sisters’ determination would be the stuff of heroic legend, if we lived in a country that valued heroic legend. In the wake of Mark Rippee’s second brush with death by an oncoming car he couldn’t see, Catherine has released a new petition. It demands intervention from California Governor Gavin Newsom to rectify this travesty of public policy. It reads in part: “While we hold the County of Solano and many officials, departments and agencies responsible for not preventing this second tragedy that we told them would happen – We also demand that the State of California and in particular – Governor Gavin Newsom – whom we have previously attempted to contact – PAY ATTENTION TO THIS SITUATION and ACT accordingly!”
Moreover, thanks to the sisters and the Internet, word of Mark’s ordeal is spreading at the grass-roots level. Activists around the country, alerted to the nightmare, have begun writing letters demanding justice for Mark.
Here are two. Their tone of indignation and urgency is echoed by many more.
From Donna Erickson of Massachusetts:
“Hello, I’m writing to voice my concern, in regard to a homeless individual named James Mark Rippee. As you probably know, he is severely disabled both mentally and physically. Being blind only further complicates his poor condition. The real tragedy here is that none of this is his fault. Severe mental illness is a disease nobody chooses. Many who are afflicted are unaware of how sick they are, because of anosognosia, which is lack of insight, a condition that is a manifestation of the illness itself. It is not his fault that he repeatedly walks into traffic.
“His brain is broken, and he cannot see. Someone in this condition should never have been put on the street. So now he is hospitalized for another accident, resulting in critical injuries, including a skull fracture, brain bleed, and broken bones. He will need many surgeries.
“His family is devastated, because they tried so hard to get him off the streets. But the laws get in the way. This poor man requires a hospital, rehab, and eventually a long-term residential facility. If he is an elopement risk, then there are locked facilities. Mark’s value as a person is no less than any of us on Earth. He has fallen through the cracks of a very broken system.
“How would you feel if this was your family member? Mental illness can strike anyone. He is not a nobody. He is a family member of caring individuals who have tried everything in their power to help. The tragic part is that this all could have been avoided, if only someone had truly cared and listened. Keeping someone on the streets in his condition is disgraceful. And it shouldn’t matter what he says. He is unable to make a rational decision, which is in his best interest, due to his illness.
“The system has failed him, because no one intervened, even though the family had begged and pleaded. I had to voice my concern, because this could have been my son. This could have been anyone’s son, and we need to start taking care of our most vulnerable citizens!”
And from the Maryland advocate Laura Pogliano:
“My friend [Catherine] Hanson and her sister Linda Rippee have been trying to help their brother Mark for 13 years; a motorcycle crash left him with no eyes, a severe brain injury, broken bones all over his body, a metal rod in his leg, and as a result of TBI, schizophrenia. He’s been on the streets for years, being victimized, robbed, beaten and neglected. They’ve been denied help for him over and over by the county they’re in, by hospitals.
“He’s been admitted to, by group homes, by every support service you can think of. He was hit by a car a few months ago and while inpatient, one sister’s medical power of attorney was revoked, and the psychiatrist sided with his delusional raging patient, that he was capable of making his own medical choices and caring for himself (blind and floridly psychotic). He was discharged to a group home and lasted about a week.
“Now, living on the streets, Mark’s been hit by a car again! Only this time, he was thrown into the air and smashed his face against the driver’s windshield. He’s in bad shape, has another brain injury, the leg with the metal rods is shattered, his shoulder is dislocated and he might lose what’s left of his teeth.
“He’s going to need months of hospitals, multiple surgeries, and extended care. And guess what? He’s in the same damned hospital that battled back against his family and discharged him to the streets.
“Mental health care in America. You stand a slight, very slight chance of making it, if you’re healthy enough to ask for help and participate in it. If you’re really, really sick, you’re screwed.”
In a city in America, here in the Twenty-first century, a man has been left to die. But in America, the voices of reclamation are arising to insist on his right to live.
But we care, Diane Keaton. Join our cause to make America care about “crazy people.”
I can visualize the scene: a book-tour venue; a synagogue in Washington. (I can visualize it thanks to the subtly bravura piece by the Washington Post reporter Ellen McCarthy, linked below.) Every seat is taken, because today this is a celebrity book-tour venue. The celebrity author, an iconic movie star, walks onstage. The audience leaps up in a standing ovation. They are mostly middle-aged women who had paid forty dollars each to come and see the movie star in person. In person!
The folks squirm back into their seats and the iconic movie star–Diane Keaton–begins to speak. Diane Keaton has just published her third memoir. It is a departure from the usual books from Hollywood stars. Its subject is her younger brother. Her mentally ill younger brother, whose name is Randy. Its title is Brother & Sister.
Diane Keaton speaks ruefully about the book’s rueful theme, which is her regret over abandoning Randy during the decades when she was driving herself to Hollywood stardom and the adulation of the millions. As children, the two had been close. But Ms. Keaton’s growing fame had come at the expense of this bond. Randy sank into the morass of “alcoholism, joblessness, divorce, isolation, fantasies about violence against women and a suicide attempt,” in reporter McCarthy’s retelling.
Diane Keaton. Photo Credit: Firooz Zahedi / CC BY-SA (https://creativecommons.org/licenses/by-sa/3.0)
(Brother and sister reconciled some ten years ago, and Keaton now visits Randy in his assisted-living quarters.)
“’There are so many people who live through the pain of having a family member who doesn’t quite fit in,’” she remarked, as McCarthy reports. “She said she wanted to open up a dialogue about mental health and to offer herself up as a cautionary tale that could inspire people to ‘be better’ to their loved ones sooner than she had.”
And then Diane Keaton consented to answering some questions written in advance by audience members.
McCarthy: “The questions . . . had nothing to do with Randy’s [life]. They had to do with [the Keaton movies] Something’s Gotta Give, The First Wives Club and Father of the Bride. With whether Keaton has a favorite co-star.”
And there you more or less have it: No one in the room cared about crazy people. Or if they did care, they kept it to themselves. Diane Keaton’s cautionary tale was smothered–banished, rendered nonexistent–beneath an avalanche of forty-dollar-a-seat celebrity worship.
And my guess is, that’s the way it will go as long as Diane Keaton continues her tour for Brother & Sister. Lots of jam-packed venues with expensive seating. Lots of standing ovations. Lots of iterations by Diane Keaton about the travails of her mentally ill brother Randy, her lamented separation from him, and the late-life restoration of their loving bond.
Followed by lots of “Do you have a favorite co-star?” “How did you like working on The First Wives’ Club“?
Ms. Keaton, I have an invitation for you. It is for when you grow weary of fielding fangirl and fanboy questions during your tour for the book about reclaiming the union between your brother and you. Or even if you don’t grow weary.
Come and make common cause with us. Give your support to the growing nationwide movement to reform mental healthcare. You will have caught us at the floodtide: our activists have presented proposals to all of the Democratic candidates for the 2020 presidential election. And they have listened, and shown that they care.
This would not require much in the way of your personal time and commitment. Your imprimatur . . . your endorsement of our goals . . . perhaps a shout-out to one of our several organizations or causes, or brief remarks at one of our national gatherings . . . any or all of these things could supercharge our efforts. The moral dimensions of your journey with (and without, and with again) Randy; your insights as a denizen of the pressurized and volatile Hollywood community, where psychic balance often lives at the border of madness; your message to a nation still largely clueless about mental illness . . . and, yes, the weight of your hard-fought and well deserved celebrity hood.
A partial list of leaders in the movement follows. There are many others. Please join us and support us.
Bernie, you represent me in Congress. I am a constituent of yours who has voted for you regularly. We know one another a little. (In Vermont, everybody knows one another a little.) I have followed your political career with admiration. I have defended you against my Democrat and progressive friends who insist that you are prohibitively doctrinaire, headstrong, and abrasive/dismissive in conversation. (Who, knowing you, could possibly believe these things?!)
I applaud your decades of consistency in holding large corporations to account for their greed, deceptions, and perversions of economic and social justice. I feel inspired by your support of the American worker even as many American workers, including many in your home state, are blinded to your support by your self-identification as a “socialist.”
And so, when I make the urgent request that I am about to make, I hope you will not reject it out of hand as the trolling of a political opponent. I’m asking you to reconsider your stands on three critical elements of U.S. mental health-care policy. Singly and as a group, these elements in their present form contribute to the ongoing national crisis in the care of our most helpless citizens.
The three involve the so-called IMD exclusion, the HIPAA rules, and controversial laws surrounding the civil commitment of people in psychotic states.
Your problematic proposals are as follows: to defend the oppressive “IMD exclusion” that disallows Medicaid funding for those hospitalized with mental illness; to maintain the so-called HIPAA rule; and to keep in place the highly problematic civil commitment laws (laws that bar hospitalization of a person in a psychotic episode, unless it’s demonstrated that person is a danger to self or others).
Senator, each of these policies has caused untold and needless frustration, and often financial loss, to sufferers and their families. Each of the reform proposals you oppose amounts to a common-sense solution. Yet each, and all, of these laws are defended by lobbying groups within the anti-psychiatry community and by mental-illness deniers, despite breakthroughs in neuroscience and brain-scan technology dating to the 1980s.
To examine each of them:
The IMD (Institutions for Mental Diseases) exclusion bars federal Medicaid financing for patients in psychiatric facilities with more than sixteen beds. It was enacted in 1965, the new Bronze Age of mental-health care, when large, decrepit, and often brutally run asylums brooded over the landscape. In 2020, IMD is a destructive artifact that stands athwart the enlightened trend toward smaller, efficient community-based care centers with professionalized staffs.
Case in point: The venerable Brattleboro Retreat—Vermont’s largest psychiatric hospital—emblemizes the creaking policy’s noxious legacy: in January, the private nonprofit Retreat warned that a funding crisis might lead to its shutting down. Not until crisis negotiations a few weeks later between the governor and Vermont’s Agency of Human Services did the state grudgingly consent to cough up $2 million in emergency funds to keep the Retreat going. Its future remains precarious.
Meanwhile, Vermont’s shortage of acute care beds for the mentally ill has grown even more dire. In the words of the reform advocate DJ Jaffe, “It is hard for Senator Sanders to argue in favor of ‘healthcare for all’ while embracing the federally sanctioned discrimination embedded in Medicaid that is causing hospital beds for the seriously mentally ill to close.”
The cumbersome HIPAA is similarly a counter-productive policy that calls for scrapping, not defending. The Health Insurance Portability and AccountabilityAct was signed in 1996 to accomplish many things, most notably, to restrict the personal and medical data of hospital patients from scrutiny by insurance companies, employers, other care providers—and also from the patients’ family members.
The unintended consequences of HIPAA thrust mental patients’ families, into an abyss of anxiety and frustration. Denied any scrap of information—Is our child resting? Screaming? Lashing out at doctors? Improperly medicated? How can we help him/her?—parents can only rage against the curse-upon-curse that HIPAA imposes. My wife and I experienced this torture when our son Kevin was hospitalized with schizophrenia. We wanted desperately to know what medications he was being given. We had seen the horrifying effects on him from meds that did not suit his biological system and wanted to share what we knew.
Kevin was eventually released from the hospital. He took his life during an episode of psychosis a week before his twenty-first birthday in 2005.
Surely the HIPAA laws can at least be modified to include a sufferer’s loved ones in the information loop without releasing sensitive data to all and sundry. Yet, Senator Sanders, you have stated your opposition to any amendments whatsoever. Please—and I ask on behalf of desperate parents everywhere—please reconsider.
As for your intention to stand by the existing civil commitment laws: These laws changed the history of confronting psychotic behavior by raising, for the first time, legal obstacles to what had been intended as purely medical decisions. Most of these civil commitment laws were enacted by states in the 1970s, a period of passionate civil-rights activism and also fervent skepticism about the very existence of mental illness. The laws have bedeviled advocates and judges ever since. They address questions that have no clear answers, yet can determine the life or death of a person in a state of crisis, and of anyone nearby. Is this agitated person capable of self-harm or harm to others? Should such people be treated against their will, or should their civil liberties be prioritized above the risk of mayhem? And most critically, how is risk, or lack of it, ascertained in the emotionally charged moments of crisis? How is psychosis determined?
The commitment laws essentially allow the person in crisis to give the answers—a genuflection to the principle of civil liberties. These privilege the law above psychiatric/medical judgment. Given that civil liberties are among America’s most cherished ideals, this direction makes sense. Or it would make sense, if the person in psychosis is capable of reasoned thought.
Psychosis by definition is a break with reality, an inability to think in a rational way. In a large number of cases—up to 50%, according to most estimates—the affliction is accompanied by a condition called anosognosia, the inability to comprehend that one has a psychotic illness.
Given such overpowering impediments to clear thought, how can a sufferer possibly be expected to rule on his or her own need for psychiatric intervention?
DJ Jaffee, executive director of Mental Illness Policy Organization, offers one trending alternative: the use of assisted outpatient treatment (AOT). Jaffee writes, “AOT is a procedure that allows judges— after full due process— to commit the few seriously mentally ill who are historically and potentially dangerous to stay up to one year in outpatient treatment, often including medications, while they continue to live uninstitutionalized in the community. Outpatient commitment is less expensive and less restrictive than inpatient commitment.”
Dj Jaffe
I’m not suggesting that any of these remedies is simple. Nothing about mental illness is simple. It remains a unique curse, defying cure, reclamation, policies without pitfalls. All who attempt to seriously tackle these challenges must brace for unintended consequences. Yet these hurdles are no excuse for allowing patently bad policies to continue unopposed.
We in the advocacy movement are grateful for your political leadership in the struggle for justice and thoughtful reform in our broken mental healthcare system, Senator Sanders. Please consider these suggestions for critical refining of your policies in your campaign.
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 day after announcing the most thorough mental-healthcare reform plan of any presidential candidate, Sen. Kamala Harris was blistered in an online essay claiming her measures would hurt, not help, the seriously mentally ill. The war of words over this subject is back. Beware.
“[W]e have seen . . . a gradual increase in language that is either meaningless or destructive of meaning . . . this increasing unreliability of language parallels the increasing disintegration . . . of persons and communities.” –Wendell Berry, “Standing by Words”
“If you talk to God, you are praying; If God talks to you, you have schizophrenia. If the dead talk to you, you are a spiritualist; If you talk to the dead, you are a schizophrenic.” –Thomas Szasz, “The Second Sin”
Dr. Thomas Szaz. Credit: Jennyphotos [CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0)]
Szasz is dead. But Szaszism lingers on to obfuscate again.
The dark angel of opposition to social action on behalf of the mentally ill is stirring three years after his death at age 92 in 2017. Thomas Szasz’s new burst of influence, concocted from a brilliant blend of seductive yet fatally spurious rhetoric, is hardly trivial: it aims at (re)infecting political opinion about incurable brain disease, and of intimidating a hopeful new generation of advocates for mental healthcare reform.
On November 27, the heirs of Szaszian thought targeted a presidential aspirant.
In order to understand why this is important—and to learn why its importance is linked to reliable language—it is helpful to revisit the influence of a man whose artful use of words brought mental healthcare reform to a virtual standstill for more than half a century.
Thomas Szasz’s initial impact on debates over madness landed as a bombshell in 1961. His book, The Myth of Mental Illness, stun-gunned a psychiatric establishment at the peak of its popular influence. Its message found a rapturous welcome in an America primed to rebel against orthodoxy and to be persuaded that madness, that ancient dreaded specter, was nothing more than a kind of lifestyle choice, or a metaphor for commonplace distress. As for the doctors who would seek to “cure” that choice with medications and forced hospital treatment? They were nothing more than agents of authoritarian social control. Of “political tyranny,” in his words.
Szaszian thought has been quiescent for some years. Kamala Harris can tell you that it is back. Less than a week before she dropped out of the Democratic primary race on December 3, the California Senator recently announced the most far-reaching of all the Democratic candidates’ reform proposals. Her plan was immediately assailed as a threat to “the most vulnerable.”
The attack was published in the online journal Vox. Its opening paragraph declared that Harris “seems to have gone all-in on attacking the freedom, dignity, and privacy of people with mental health conditions.”
Did she really “seem to” do that? What for? The notion that a major-party presidential candidate would embrace and broadcast such sinister desires seems improbable. But this is the tao of the resistance to mental healthcare reform. Or as they presently call themselves, “the disabilities community.” In her very next sentence, the writer makes her affiliation clear: “People like me.”
Sara Luterman
The writer is Sara Luterman, an independent journalist, blogger, and self-identified victim of autism. The National Institute of Mental Health identifies autism as a “spectrum disorder” that can show a wide range and degree of symptoms. It’s also known as a “development disorder” because it can manifest in the first two years of life. Its symptoms can include difficulties in communication, restricted interests, and repetitive behaviors. Doctors believe that it is transmitted genetically and thus must be classified as disease of the brain—a mental illness. Many sufferers, it is believed, can be stabilized via medications. A more complete discussion of autism may be found here: https://www.nimh.nih.gov/health/publications/autism-spectrum-disorder/index.shtml
I am citing the consensus description of autism here because the going is about to get tricky for me, and I do not want to be misunderstood.
I don’t know Sara Luterman. I feel sympathy and respect for her as a sufferer of this affliction. I have no reason to believe that she is other than an honorable, intelligent, and courageous woman and an accomplished critical thinker.
And I strongly disagree with every argument and assertion that she makes in her essay.
My disagreements are not personal, nor do they imply any belief that her ideas are conditioned by her affliction. I take issue exclusively with her text itself.
That said:
After presuming to speak for Kamala Harris’s “extreme” intentions, Luterman widens her rhetorical authority to include the entire “disabilities community.” “Leaders in the disabilities rights community have unequivocally condemned Harris’s plan,” she asserts without documentation. On behalf of this undefined mass, she lays out several objections to Senator Harris’s specifics. She focuses on three: repealing the so-called IMD exclusion, expanding assisted outpatient treatment programs (AOT) and limiting the act known as HIPAA.
Each of these three goals is a cornerstone of the mental-healthcare reform movement. Each carries enormous social and individual implications. Each deserves to be proposed, and opposed, in responsible language. Sara Luterman, as the self-appointed spokesperson of the opposition, fails in this obligation. To itemize:
The IMD exclusion. The initials stand for Institutions for Mental Diseases. The “exclusion” refers to a Medicare provision that prohibits funding for care facilities with more than sixteen beds. The Mental Illness Policy Organization has reported that as of 2005, the most recent reporting year, only seventeen beds existed for every 100,000 potential patients, a drastic shrinkage from 340 per 100,000 in 1955. The total estimated shortfall is more than 120,000. This, in the opinion of many advocates, amounts to “the federally mandated discrimination against the seriously mentally ill.”
The consequences of this shortfall play out regularly in national news coverage: the staggering numbers of mentally ill people at large on the municipal streets, the dumping of this same luckless population into our overcrowded jails and prisons. Some 378,000 incarcerated persons have severe mental illness. An increase in psychiatric beds would logically enable expanded care centers to ease the glut in these arenas of human hopelessness. Senator Harris would double the number of psychiatric treatment beds. This would amount to a maximum of thirty-two beds per facility.
Yet Luterman ignores the clear humanity of such an outcome. For her, this modest increase in the number of beds can lead to only one monstrous consequence: the return of the insane asylum.
The insane asylum. Few phrases are burned more deeply into the national consciousness; few bear more sinister imagery: brooding colossal piles of brick and granite, whose choked corridors echo with the wails of the beaten, the chained, the starved, the raped, the socially damned. The images derive from such now-extinct hell-holes as the Trans Allegheny Lunatic Asylum, with its 2400 patients crammed into space intended for 250. Or Greystone Park, with 1189 patients in its 800-capacity confines. Or Danvers Asylum, with 2000 patients stuffed into space designed for 500. These are among the proto-haunted houses of our nightmares.
Danvers State Hospital, c. 1893
Is this what Luterman means by “insane asylums”? She does not bother to say. She neither defines nor delimits what she means. She simply hangs the term out there and allows the reader to interpret the semiotic. And to let the Harris plan’s 32-bed maximum swell to gothic imaginary dimensions.
The reader might better ask: why is such a consequence inevitable? It assumes we have learned nothing from the disastrous epoch of the Big Asylum. The conservative social/political critic Norman Ornstein—whose mentally ill son Matthew died in 2015—offers what strikes me as a far more clear-eyed, less apocalyptic prospectus. He supports an increase in the number of psychiatric beds. He would populate their still-scarce number with the most abject cases and build in strong oversight requirements to forestall decay and abuse.
Ornstein writes,
“Make it clear, that you are concerned about those people with the most serious mental illnesses who have no insight into their diseases, will not accept treatment, and are often captives to their delusions. Anosognosia [the illness-induced lack of insight] is a real phenomenon for a substantial portion of those with serious mental illnesses; it is not a choice but an integral part of their brain diseases.”
DJ Jaffe
Closely aligned with increasing beds is Senator Harris’s embrace of more funding for AOT. DJ Jaffe of the Mental Illness Policy Organization makes the common-sense argument that competent outpatient treatment is a lifeline to those who wander in a haze of cognitive bewilderment on city streets and risk committing an irrational act that will land them behind bars. But to Luterman, AOT offers nothing of the sort. It is merely “paternalistic,” and a mechanism for “forcible” medication and treatment, a concept loathed by the disabilities community.
Here is another view, from a member of the selfsame “disabilities community” that Luterman claims to speak for. Eric Smith is a young, afflicted Texan who is making a name for himself as a rising speaker and writer for reform causes. A few days ago, Eric responded to the controversy thusly:
“Those who fight against strong AOT programs and better access to psychiatric beds are fighting for my right as an individual diagnosed with serious mental illness to be a victim of the demons that own every part of who I was before a psych bed and AOT saved my life.”
“Forcible,” “forced,” and “involuntary” are the most pre-emptively punishing words in the anti-treatment arsenal. They trace directly to Szasz, who founded his entire crusade of resistance to any form of treatment on the argument. Szasz saw government intervention as an instrument of authoritarian control: Psychiatry is “an arm of the coercive apparatus of the state,” he wrote, and thus “All of medicine threatens to become transformed from personal therapy into political tyranny.” Involuntary mental hospitalization was like slavery. And: “The dogmatic view that mental diseases are brain diseases, treatable with chemicals, dehumanizes the patients.”
It is important to contemplate the fact that Szasz formed common cause with that notably clear-thinking L. Ron Hubbard, the founder of Scientology. And that his ideas caught the attention of the American Civil Liberties Union, which exalted his view that forced medication and treatment of a person in psychosis violated the person’s civil rights. That alliance irradiated social policy. In 1975, the Supreme Court ruled, in effect, that it is unconstitutional to commit for treatment an individual who is not (imminently) dangerous. The test for imminent danger was not specified.
When microcomputer breakthroughs in the mid-1980s produced evidence that brain diseases indeed existed—detectable as tiny lesions caused by the cocktail of flawed genes in schizophrenia patients—Szasz was not moved: “The evidence is not scientifically compelling.” Fake news, so to speak.
These of course are classic Libertarian views; and Szasz, a prewar immigrant from a nation (Hungary) situated between two totalitarian powers—Russia and Germany—bore an understandable aversion to totalitarian thought of any stripe. Ironic, then, that his own ideas bore the mark of absolutism. They allowed no compromise, no modification, no re-interpretation in the light of new evidence. Just unconditional surrender. His inheritors in time present show similar rigidity, though their attempts at aphorism lack the master’s panache. “It is not an America I would like to live in,” is a typical Lutermanian turn of phrase.
This brings us to (3), the act known as HIPAA.
The initials stand for the Health Insurance Portability and Accountability Act. HIPAA, enacted by Congress in 1996, seeks to assure the privacy of a patient’s medical records without the patient’s consent.
In theory, such protection is praiseworthy. In practice, HIPAA laws seal out not only snooping insurance providers, journalists, and potential employers, but also close relatives frantic for information on their loved one’s diagnosis, condition, treatment plan, medication, and degree of stability. “Normal” patients may volunteer such information to their families. Patients in psychosis generally lack capability for rational consent of any kind.
Leslie Carpenter, the Iowa advocate who presented her colleagues’ reform plan to Senator Harris, has explained HIPAA’s deficiencies in some detail:
“First, it is a concern about the lack of two-way communication that helps the family to more actively support the loved one who is sick. Providers hide behind HIPAA to avoid talking with family, and this limits active collaboration that allows the family to tell the providers about the patient’s actual symptoms and function.
“Second, some families take home a sick loved one without even knowing the diagnosis, the medications needed and how vital they are, what side effects to watch for, and when to schedule follow up-appointments. Because of HIPAA restrictions, they can’t actively help get the sick loved one to appointments and to take their medications.
“Third, sometimes/often, loved ones are discharged before being stabilized: while they are actively suicidal or having thoughts of hurting others. Because of HIPAA, no one informs the family. This puts the person and all those near the person at risk.”
Common sense—and the Harris plan—would amend HIPAA so that it permits family members to receive information of this kind while screening out others. This is not enough for Luterman and the disabilities community. For her, and presumably for them, HIPAA compromises would be one thing and one thing only: “extreme.” “Harris would allow health care professionals to disregard the consent of their patients if they happen to think [sic] doing so is important,” she writes. No acknowledgment of the complexities laid out by Leslie Carpenter.
My focus so far has been on three important reform plans that Senator Harris proposes and Luterman attacks. Yet the damage that Luterman seeks to effect is more general. Her Vox essay is weighted with grievance that does not bear close examination. Specifically, she raises the oldest, most pernicious complaint in the Szaszian followers’ playbook: that the seriously mentally ill do not have veto power over professional efforts to help them in times of crisis. (Recall: “Forcible,” “forced,” and “involuntary.” Recall psychiatry as “an arm of the coercive apparatus of the state”).
Recall these pronouncements. And then recall the towering, historically unique conundrum that serious mental illness embodies:
Serious mental illness is different. It is categorically unique. It has no analogs—not in human behavior, not in medicine, not in law, not in the sphere of ethics, not in its capacity to trigger heartbreak and catastrophe and dread.
Serious mental illness removes volition.
Serious mental illness makes it impossible for all but a few of its victims to arbitrate whether they will allow treatment because it nullifies the arbitrating mechanism. To paraphrase Danny DeVito in Heist: “That’s why they call it mental illness.”
All of that said: I, and many other advocates for reform (I can’t speculate on how many) recognize the many, many variables—and the contradictions—that are baked into this most diabolical of afflictions. I—we—I—recognize that so much remains a mystery. That medications, our best hope for surcease until a cure is found, do not work equally well from one patient to the next. (Yet they generally do work in their task of temporary stabilization.) I recognize, and have written about, the monstrous legacy of fraud and profiteering in Big Pharma. I recognize that at least some care centers, and some care-givers, are incompetent, doing more harm than good. I recognize, I recognize, I recognize.
Yet even in the depths of grief I have often endured since the suicide of my son Kevin, who was not helped by any of the structures erected to reclaim him and his fellow-sufferers—even in these depths—I pull myself back by clinging to these verities:
This is the hand we have been dealt.
Our efforts are far from perfect, and sometimes calamitous.
We must keep groping through the fog until we or our descendants stumble into the light.
This is our dharma. Our sacred duty.
And to those who try to bury our reform ideas in waves of false rhetoric—under extreme! And dangers! And rights! And shame!
To those people, this must be our sole and all-encompassing response:
In one breathtaking stroke, Kamala Harris has just widened the contours of presidential campaign history and thrown light into the darkest corridors of shameful human suffering.
On Monday, Harris affirmed that America is in the throes of a mental healthcare crisis. And she backed up her ringing assertion by adopting all the major goals of advocates for enlightened mental healthcare and fairness in our nation’s policies and practices. While several of her rivals for the Democratic presidential nomination have put forth their own reform proposals, none matches the sweep of the Harris plan, and none has triggered such rejoicing in the ranks of reform advocates.
In the words of the premier advocate-warrior DJ Jaffe: “Wow! Wow!” Jaffe added that the Harris plan embraced “everything we’ve been looking for to help [the] seriously mentally ill.”
With these gestures, Harris has frontally attacked a century’s worth of neglect, denial, obfuscation, and wasted spending that define the country’s medieval approach to its most helpless citizens.
Among her plan’s many, desperately needed virtues:
The Harris plan reinvigorates the concept of “justice” in dealing with the mentally ill; yet it implies a range of practical economic benefits as well. Her agenda attacks the widening cone of unnecessary social cost and structural blight that proceeds from the stricken individual through the community, the city, the rural landscape, and our vast failed archipelago.
In calling for a doubling of the nation’s psychiatric beds, for example, Harris opens a path to significant reduction of taxpayer money spent on the glut of afflicted people behind bars: Each year more than 2 million people with serious mental illness are thrown in jail, often because care centers have no room. Incarcerating an inmate with mental illness costs $31,000 annually, while community mental health services cost about $10,000.
Harris’s recommendations are protean. They contemplate the needs of psychically damaged veterans; telemedicine as a resource in under-served rural communities; the elimination of foolish laws that prevent family members from learning the state of a relative in hospital care; an increase in crisis-intervention teams; criminal-justice diversion for people in psychoses arrested for a crime; education for a judiciary too often clueless as to the nature of mental illness, and “Medicare-for-all” coverage for the mentally ill.
And it calls for the abolishment of the evil known as solitary confinement. Other Democrats have attacked this scourge as well, though that is hardly a discredit. Solitary confinement cannot be excoriated too many times.
The Harris plan is not exactly sailing in calm political waters, of course. The cynicism and bad faith that now besmirch our civic discourse might well capsize this vessel of reforms. Some pundits will almost surely write it off as a desperation gesture from a candidate struggling to gain traction in the polls–or as a cosmetic ploy to soften Harris’s residual image as a remorseless prosecutor.
Such dismissal would be as shameful–as borderline-decadent–as is the present state of mental healthcare itself. Kamala Harris’s proposed reforms are what they are, without reference to the candidate. They cry out to be lifted up from the ruck of conventional campaign promises and examined (and re-examined, and debated, and circulated“, and published) on their own merits.
And they are something beyond themselves, as well: they are a blazing collective affirmation of the power of witness: persistent, retail, on-the-ground political advocacy. To the politics of personal persuasion and response, if you like.
Leslie Carpenter and Kamala Harris Photo Courtesy Leslie Carpenter
Virtually every Democratic candidate who has spoken up about mental health-care reform has been educated on the soil of Iowa, face-to-face, by the phenomenal team of Leslie and Scott Carpenter. They and their fellow advocates–my friends and models of informed passion and persistence–are living testaments to the ideal of Making a Difference. Most of these people have struggled for years, in small groups, in letters and emails to the powerful, and against fatigue and hopelessness. Nearly every one of them is closely related to a victim of serious mental illness.