Covid Denial: Shared Psychosis–Or Something Worse?

DeSantis speaking at a press conference in southwest Florida,

“I have (three) young kids. My wife and I are not going to do the mask with the kids. We never have, we won’t. I want to see my kids smiling. I want them having fun.”

I don’t know. I mean, I really don’t know. What are the outer limits of rightwing arrogance and delusion? What are the limits of human delusion? Are there any limits?

Does “depraved indifference to human life” have any meaning anymore? Does anything have any meaning anymore?

This . . . man, this father, this college-educated governor of a major state, this grinning buffoon who was elected to protect the well-being of 21.6 million souls–the population of Florida, third-largest in the nation—is instead toying with their health and their lives–AND THE HEALTH AND LIVES OF HIS OWN WIFE AND CHILDREN!—and for what?! Stab in the dark here: his personal political ambition.

Florida is averaging 17,000 new cases of Covid-19 per day as the deadly Delta variant surges. Seventeen. Thousand. A day.

And Ron DeSantis wants to see his kids smiling and having fun. So, no masks. And he’s not going to allow schools to mandate mask-wearing in Florida, either.

Ron DeSantis must have a major smile jones.

Over the past wretched year, the past wretched five years, I have often snapped at friends who wailingly ask, “What have we come to?” “How did we get to this point?”

They ask it in bewilderment over Covid denialism. And the Trump administration. And the post-Trump-administration depravities such as the January 6 Capitol storming. And the subsequent mockery directed at brutalized, traumatized police heroes as “actors” in “political theater.”

And in bewilderment over the armchair rightwingers such as the radio blowhard Charlie Kirk who denounce the tormented Simone Biles as a “selfish sociopath[!]” for withdrawing from the Olympics. (On Tuesday she decided to compete in the balance beam final and won a Bronze medal.) And the others who sneer at “the liberals” who supposedly “shed a tear” over her mental-health crisis.

I tell these worried friends: Don’t just ask, in tones that imply the question is unanswerable. There are answers! Find them! Read! Research! Go online! Google “collective psychosis”! Google “tribalism”!

And feeling ever-so-slightly superior in my own stern rationalism.

Until I could no longer pretend to hear the small voice inside me that kept repeating, more loudly each time: “ . . . Maybe.” With the loudly unspoken corollary: “ . . . And maybe not.”

I’ve spent the past several weeks—well, months—trying to follow my own advice. I’ve pored through books, scholarly articles, and serious journalism to help myself figure out why the political fissures and tensions, always present in American life, have burst into this continental oil-refinery fire. And why those who stand to suffer the most from its many scorching flames are responding by throwing more petroleum onto it. ( Vide: Governor Ron DeSantis of Florida throwing up barriers to commonsense Covid protection so that he can see his children smile and have fun.)

Have you ever heard of a more deranged and irresponsible reaction to an existential threat?

As the father of two loved and loving sons who both contracted schizophrenia, one of them taking his life, I am naturally attuned to the fragility of the human mind. (And infuriated at the fatuous Governor for taking his children’s health for granted.) I’m no psychiatric scholar, no authority of any kind. Yet I have learned enough to understand that none of us is truly “normal.” There really is no “normal.” We all advance through life across a thin membrane, a membrane that could rip and thus plunge any of us into a chronic, incurable brain disease such as schizophrenia. Or, far more commonly, into treatable yet debilitating conditions such as depression, rage, alcoholism, refuge in alienated “tribes,” susceptibility to the lure of seductively tyrannical cults.

I’ve winnowed my explorations to the latter two: the tribe and the cult.

An affinity for either of these collective bodies strongly suggests that even though the adherent may not be seriously mentally ill, she may well be wounded enough by life’s cruelties (including abuse, poverty, addiction, a bad education) that her self-identity is ravaged and she has surrendered the capacity to think and act in her own best interests. She accepts the group’s ethos as her own.

To vastly oversimplify: the tribe is generally a physical community of people nurtured by handed-down beliefs. It has the power to absorb an individual’s identity into its shared values, myths, prejudices, and class/political assumptions. The cult generally does not spring from an organic community. It magnetizes rather than nurtures. Its magnetism has been radically enhanced by the electronic grid. The psychic power of the cult over vulnerable individuals is if anything far greater and more insidious than that of the tribe.

I accept the reality of tribal behavior—like most of us, I have witnessed it and lived it to some degree—yet I’ve found myself leaning to the cult as the powerful source of our present chaos.

Cults attract people who did not necessarily come of age under a cultish spell. Cults attract desperate loners; those whose self-identities have been desiccated; people who virtually doubt their own existence and crave identification with a group that promises them a means of belonging.

I think of QAnon. I think of Chris Hedges’s masterful and ironically titled 2014 book, “War Is a Force that gives us meaning.” I think of the odious threadbare trope, “Drink the Kool-Aid.”

Cults, I came to believe in my hard-earned layman’s understanding, are a form of collective psychosis. Yes, that was it! Shared psychosis.

And then I contacted Dr. Joseph Pierre for confirmation.

Dr. Joesph Pierre

Dr. Pierre is professor in the Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine at UCLA. He is copiously published and widely interviewed in the areas of forensic psychiatry, neuroscience, delusion-like belief, cannabis-induced psychosis, and in many topics related to schizophrenia.  

Dr. Pierre has studied shared psychosis, yet he does not think it is responsible for our current havoc. In a recent email, he wrote,

“I am firm in saying that movements like QAnon, however crazy they might sound, are not examples of shared or collective psychosis proper.”

He clarified his view in a June edition of the online journal “Medium.” Without intending to speak for him, I infer a proposition even more troubling than psychosis: the rapid erosion of shared reality. The twilight of “the truth.”

Referring to the rash of harebrained theories that accompanied Covid’s rise, Dr. Pierre writes,

“Conspiracy theories reject authoritative accounts of reality in favor of some plot involving a group of people with malevolent intentions that are deliberately kept secret from the public. The psychological underpinnings of belief in conspiracy theories include a long list of associated cognitive quirks including lack of analytic thinking and heightened ‘bullshit receptivity;’ need for control, certainty, and closure; and various attributional biases such as the tendency to ascribe random events to ultimate ‘teleologic’ causes.”

There it is–an explanation of our current carnival of chaos as terrifying as it is simple. And as tragic. Dr. Pierre titled his essay, “Winning the Battle Against Covid-19 Requires More Belief in Reality.”

And good luck with that. William Butler Yeats wrote the death warrant for such optimism eighty years ago in a line from “Four Quartets”: “Go, go, go, said the bird. Humankind cannot bear very much reality.”

Not that humankind ever could. In America alone, we have lived with the denial that slavery caused the Civil War since the ink dried on Lee’s surrender at Appomattox. Thus seven hundred fifty thousand people died over “states’ rights.” (Uh, states’ rights to do what?) The curse of racism stoutly denied is viler than ever today, embedding itself blatantly in our school systems and poisoning free and fair elections.

In April 1966, the cover of Time Magazine thunderously asked, “Is God Dead?”—having answered the question the previous October, in the affirmative. What millions of believers took as the ultimate Truth was pulverized before their eyes.

The academic “deconstruction” crusades of the 1980s gave even intellectuals the vocabulary for denying that truth, and meaningfulness in words, existed. (Besides handing a victory to the anti-intellectual right, the “tenured radicals” found themselves obliged to use words in refuting the meaning of words. An irony lies buried in there somewhere.)

And at about the same time, members of the Reagan administration, including Ronnie himself, were launching their historically effective renunciation of science.

Don’t even get me started on what this meant for poor Al Gore’s “An Inconvenient Truth.”

Or for all of us. For the “planet” we “live on.”

Dr. Pierre again:

“Conspiracy theories often arise during times of societal upheaval and can serve a blaming or scapegoating role intended to ‘self-medicate’ fears arising from chaos and uncertainty. Belief in conspiracy theories can also be understood within an overarching ‘socio-epistemic’ framework whereby mistrust in authoritative sources of information leaves us vulnerable to biased misinformation processing when searching for alternative explanations.”

So perhaps Dr. Pierre, and others, have it right: why should we reach for elusive concepts such as “shared psychosis” when the steady, centuries-long assaults on truth and meaning have softened up our frantic civilization for belief, or disbelief, in anything?

Run along and play, DeSantis children, in the open, sunlit, infected Florida air. Have fun. And don’t forget to not wear your masks!

WELL, HE DID APOLOGIZE . .

. . . After being shamed . . .

. . . Yet the Texas deputy attorney general’s ignorance about mental illness and his slurring of Simone Biles tells us all we need to know about how much America still needs to learn, and care, about “crazy people.” Especially including powerful people in our criminal-justice system. Which is one hell of a lot of learning and caring. Meantime, more shame on you, college-educated and privileged and complacent Aaron Reitz. 

https://www.washingtonpost.com/nation/2021/07/29/texas-deputy-attorney-general-simone-biles/

Texas Deputy Attorney General Aaron Reitz @aaron_reitz

You don’t hear much about mental illness reform these days. Has mental illness suddenly evaporated, like the coronavirus?

Not really. It has quietly infiltrated and normalized aberrant public behavior in our deranged national landscape.

It is now front and center in the streets.

And in the ravings of pre-eminent news personalities.

And within the highest levels of a major party

In the 1960s the breakaway Scottish mystic/psychiatrist R. D. Laing was prominent among many emerging voices proclaiming that mental illness does not exist. His aphorisms such as “Insanity [is] a perfectly rational adjustment to an insane world” and “Madness need not be all breakdown. It may also be break-through . . . ” made him a charismatic figure among the counter-culture. His work placed him in the company of the greatest denier of them all, Thomas Szasz, whose 1961 book, The Myth of Mental Illness, crippled the status of psychiatry for generations.

In that time, neuroscientists and psychiatrists worked patiently to rebuild the legitimate acceptance of mental illness and its destructive properties. Breakthrough advances in microcomputer technology established, for instance, that schizophrenia is a genuine disease of the human brain, and not just a synonym for “nut job”: it leaves lesions–tiny traces–in the brain; its clusters of flawed genes are genetically inherited and, to date, incurable.

Yet even as science (that fake mumbo-jumbo!) has steadily clarified the properties of mental illness at the top levels of discourse on the subject, its work is being rapidly undermined again where it counts: in the chaotic maw of popular culture, where malign ideology, semi-literacy, and poisonous cynicism threaten to nullify reason. Including reasoning about unreason.

Thus when the ineffable birdbrain Ann Coulter tweet-tweets, as she did on August 27, that she wants the deranged teenaged lethal shooter Kyle Rittenhouse to be her president (above), we may think of her as the hideous drum majorette at the head of a long malign parade, marching directly toward a new Dark Age.

WELL, THIS RIDS THE STREETS OF AT LEAST ONE 13-YEAR-OLD UNARMED AUTISTIC CHILD WHOSE MOTHER HAD CALLED THE POLICE FOR HELP!

Pardon the sarcasm. I am steaming. We’re still in Bedlam. The mad, including afflicted children, are still getting gunned down by cops who are clueless, untrained, or worse. Linden Cameron of Salt Lake City, riddled with police bullets on Friday for the crime of running in fear and confusion, has survived, so far. Yet our severely brain-damaged mental healthcare system–including jails, prisons, and vicious trigger-happy cops–remains mired in its historic ignorance, incompetence and, yes, cruelty.

Linden Cameron

We look, we pray, to our political leaders to at least keep “crazy people” from the worst of it; from incidents like this. A little kid, dammit! Instead–irony of ironies–the current political campaign season, as deranged in its way as are our systems of care–has managed only to push this urgent issue further into the dark margins.

This despite the unflagging work of reform advocates such as Leslie and Scott Carpenter, who pled our community’s case to every Democratic presidential candidate who passed through Iowa this summer. And the sisters C.J. Hanson and Linda Rippee, who have battled across decades to secure help for their drastically damaged street-wandering brother Mark, only to be met with stony indifference from pols at the municipal, county and state levels in California. You may find their story scattered through several entries in this blog.

And many, many  others.

To essentially no avail.

It just seems that no one cares about crazy people.

I sit here at my computer screen and I think: 13-year-old. Unarmed. In a mental crisis. His mother calls the police. And a wolfpack of cops shows up and empties several rounds of bullets into his small young body. Intestines. Bladder. Shoulder. Ankles.

Ankles?!

Linden Cameron

Bob Dylan’s lyric in “Oxford Town,” released fifty-eight years ago, remains the definitive commentary on the subject:

“Somebody better ‘vestigate soon.”

https://www.washingtonpost.com/nation/2020/09/08/linden-cameron-utah-autistic-shooting/

http://www.noonecaresaboutcrazypeople.com/?s=linden+cameron

ANOTHER BRILLIANT INDICTMENT OF OUR PRISONS!

I wrote my fingers to the bone on the U.S. criminal justice abyss in my book and after it was published. Nothing changed, and it sickened and sickens me. Congratulations on this book, Christine Montross. Thank you for bringing it to my attention, Gail Freedman.

via The New York Times

Where the Sick Get Sicker and the Sane Are Driven Mad: Behind Bars

WAITING FOR AN ECHO
The Madness of American Incarceration
By Christine Montross

When Christine Montross approached the end of her residency program in psychiatry, she met with a mentor for help evaluating two attractive job opportunities. Ignoring both options, her adviser raised the possibility of a third: “What about the prisons?” Montross balked at this unsolicited, unwanted suggestion. She deemed it an imprudent, even absurd use of her training, given the nation’s dearth of psychiatrists and broad demand for mental-health services. “Why would I want to work in the prisons?” Montross wondered. “Why devote my time and attention to people who had committed crimes when there were so many innocent people who needed care?”

Read the full story here: https://www.nytimes.com/2020/07/21/books/review/waiting-for-an-echo-christine-montross.html?action=click&module=Features&pgtype=Homepage

A STATUE FOR DR. LORNA BREEN

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.

Dr. Lorna Breen

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.

We could begin by building a statue to her.

Another Informed Dissent To Sanders’s Retrograde Mental Healthcare Views

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.

Susan Inman


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.

Sign This Petition! Help Bring Justice and Shelter to Mark Rippee!

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!

DEMAND ATTENTION FOR JAMES MARK RIPPEE, FROM GOVERNOR, GAVIN NEWSOM & THE STATE OF CALIFORNIA!

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!

Bernie: Three Changes Are Urgent to Your Good Plan for Mental Healthcare Reform

An open message to Bernie Sanders:

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?!)

Bernie Sanders
U.S. Senator Bernie Sanders of Vermont

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:

  1. 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.”

  1. The cumbersome HIPAA is similarly a counter-productive policy that calls for scrapping, not defending. The Health Insurance Portability and Accountability Act 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.

  1. 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.

Standing Tall in Iowa

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.”