Tag: advocacy

“[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.

(Suicide, on the other hand, was “a fundamental human right.” Suicide is how Thomas Szasz ended his own life.)

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.

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:

1. 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.

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.”

1. 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:

Stand aside. We have work to do.