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.
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?”
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.
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.
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, 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.
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.”
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”
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.”
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.
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.
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.
“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.”
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.
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.
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.
Andrew Romanoff could be our long-awaited congressional beacon of mental healthcare reform–if the lifers among the Democratic power-brokers will give him the chance to shine.
I traveled to the Denver suburb of Lakewood, Colorado, over the weekend, to flap my gums about reforming mental healthcare in America. And found myself listening to the most stirring talk I have ever heard about reforming mental healthcare in America.
Hint: it wasn’t mine. It covered much of the same ground, but with the riveting pace, passion and purpose that educates and inspires.
The talk was delivered without notes by a guy who came so late to the event that people were starting to walk toward the exits. When they spotted him coming through the door, they rushed back to their tables and shouted in unison: “You’re LAAAAAAATE!”
The shout was not hostile. It had been rehearsed: an affectionate scolding to one who was known and loved by the people there, who understood that he is deluged with speaking obligations.
The speaker did not disappoint. His remarks galvanized the audience, which erupted in a standing ovation at the conclusion. He had completely upstaged a certain gum-flapping speaker from earlier in the evening. The gum-flapping speaker hardly minded. He recognized that if the political will of Colorado voters were to move in the right direction, this late-arriving figure could well be the charismatic figurehead of the mental-health reform movement from the floor of the United States Senate.
If that should happen–well, better late than never.
The occasion was a gala honoring Heart-Mind-Connect, a new entrant in the expanding archipelago of grass-roots advocates for fixing our broken systems for reclaiming the mentally ill. H-M-C was recently organized by a small collective headed by the singer-songwriter Maree McRae, whose son Stephen was stricken with a rare disease known as common variable immune deficiency. CVID, a genetic disease, attacks antibodies that fight infections, and can produce schizophrenia-like behavior in its victims.
The galvanizing, late-arriving speaker was Andrew Romanoff, 53, a Democratic candidate for the U.S. Senate in 2020. Romanoff is campaigning to get past a crowded primary field that includes the former Colorado governor, John Hickenlooper, so that he can take on the incumbent Senator, the Donald Trump-supporting Cory Gardner.
Romanoff holds degrees from Yale and the University of Denver Sturm College of Law, and a master’s degree in public policy from the John F. Kennedy School of Government at Harvard. He has researched the Ku Klux Klan for the Southern Poverty Law Center. He has taught English in Nicaragua and Costa Rica.
So naturally (according to Romanoff’s own accounts) the intrepid and visionary Democratic Senatorial Campaign Committee has done its best to make him disappear. Apparently the DSCC prefers the easy listenin’ strains of the incumbent to the reformist drums and trumpets of candidates such as Romanoff.
As Channel 4, the CBS affiliate in Denver, reported in August:
“The DSCC is a powerful political machine that spends hundreds of millions of dollars each election and Romanoff says it is threatening polling, media and other political consultants that if they work with him, it will cut them off.”
“The DSCC has endorsed John Hickenlooper. Romanoff says helping Hickenlooper is one thing, sabotaging his campaign is another.”
Romanoff’s focus on mental healthcare springs from personal experience–as it does for so many advocates and policymakers.
During his tardy appearance at the H-M-C gala, Andrew Romanoff spoke for about twenty electrifying and lucid minutes, sans suitcoat (the polar opposite of being an empty suit, it occurred to me), tie loosened, fingertips in his trousers pocket, crisply ticking off the goals and the challenges of the mental healthcare reform movement. I did not take notes–no one at the event had prepared me for the eloquence and accuracy and force of Romanoff’s words. I can guarantee one and all, however, that the standard-bearer we have all longed for within the halls of political power may be working his way there.
The emotional peak of his remarks came as Romanoff recounted the horrific story of a family member who put a pistol to her head in 2014 and pulled the trigger.
The victim was Romanoff’s first cousin. “I thought of as her my kid sister,” he said. The calamity occurred without warning, without advance hints that the young woman was disturbed. “Her mom and dad and I–the four of us–were celebrating New Year’s 2015 when she walked into the backyard and killed herself.”
Romanoff’s casual, wry demeanor changed as he briefly told this story. His eyes filled and he paused several times.
A cynical politician–perhaps a lifer on the Democratic Senatorial Campaign Committee–might have seen this moment as calculated; a carefully rehearsed, twice-told tale manufactured to elicit sympathy.
I choose not to think so. As Huck Finn said, I been there before. I doubt that many readers of this blog, burdened in private by their own bereavements, would think so either.
I choose to believe that Andrew Romanoff is the goods: as a potential voice in the Senate for enlightened reform of our country’s shameful mental healthcare systems; but also as a voice for enlightened governance generally.