[Editor's note: Dr. Sally Satel's recently published book, PC, M.D. is an extraordinarily thoughtful and compelling look at how public health policy has been compromised by political correctness and victim politics. Dr. Satel devotes an entire chapter to the destructive impact that the radical psychiatric consumer-survivor movement has had in erecting barriers to treatment for the most severely mentally ill. She exposes federal and state agencies' complicity in legitimizing the consumer-survivor anti-psychiatry movement. In PC, M.D., Dr. Satel reveals just how absurd and dangerous are the basic tenets of this group of individuals who go to such extremes to prevent us from providing needed care to those who are really suffering from severe mental illnesses. This article includes excerpts from the chapter entitled, Inmates Take Over the Asylum, but we strongly recommend that you read the entire chapter—it is an eye-opener.]

Inmates Take Over the Asylum
Around midday on October 5, 1998, forty-six-year-old Margaret Mary Ray set her backpack and purse down by the railroad tracks in a small Colorado town. Then she knelt in front of an onrushing coal train and was instantly killed. Ray, who suffered from schizophrenia, had become infamous for stalking David Letterman, the television personality; she harbored the delusion that she was having a love affair with him. She had once left cookies and an empty whisky bottle in the foyer of the Letterman home in New Canaan, Connecticut.

Ray's history of mental illness had been long and troubled. Since her twenties, she had been in and out of psychiatric hospitals and jails. On antipsychotic medication she did well, but eventually she stopped taking the medicine and quickly deteriorated. Two months before her suicide she was arrested for the last time. At the hearing at which she was freed, the New York Times reported, "A judge openly lamented the absence of any legal mechanism to make sure she received medical help."

In fact, such a mechanism does exist. In a form of involuntary treatment called outpatient commitment, a court may order a regime of therapy and medication, and the patient may be rehospitalized if she fails to comply. Because of activism by a small but vocal group of former psychiatric patients, however, supported by civil liberties lawyers, thousands of people like Ray are not receiving the treatment they need to get well or at least to be safe. These activists call themselves "consumer-survivors" (also "psychiatric survivors"). The term "consumer" denotes a user of mental health services, and "survivor" refers to one who has endured psychiatric care. "'Survivor' is not used in this term in the same sense as 'cancer survivor,' someone who has had cancer and survived it," says the psychiatrist and researcher E. Fuller Torrey. "Rather," he points out, "it is being used like 'Holocaust survivor,' an individual who has been unjustly imprisoned and even tortured." Some consumer-survivors have requested that the mental health profession "make an apology to consumers for past abuses of power." As we will see, radical consumer-survivors are the ones who more properly owe apologies to patients for standing in the way of constructive treatments and policies. [Excerpt from pages 45-46.]

Their Crusade, Your Tax Dollars
Unfortunately, the federal government and state mental health agencies across the country are giving moral and financial support to the consumer-survivor movement. One of the biggest boosters is Bernard Arons, director of CMHS. Under him, CMHS funds the National Empowerment Center, an advocacy organization that is flatly against treatment by psychiatrists. "Our primary physicians must be ourselves," writes Scott Snedecor, program manager of a consumer-operated drop-in center in Portland, Oregon. In his center's newsletter, Snedecor claims that, "medication can be worse than psychosis." Pat Deegan, a consumer activist and Snedecor's colleague at the Portland center, is interested in "rehabilitating mental health workers." She produced a project called "Spirit Breaking: How the Helping Professions Hurt." Paolo Del Vecchio, a CMHS consumer affairs specialist, explained to me why he and his colleagues oppose involuntary treatment: it reminds patients of "their own personal Holocaust and leaves them feeling hopeless, believing they will never recover." [Excerpt from page 47.]

Consumer-survivors have been spreading the word to other countries as well. In September 1999 a group of fifteen flew to Santiago, Chile, to attend the biannual meeting of the World Federation for Mental Health (an otherwise mainstream conference), courtesy of travel scholarships funded by CMHS. Among the scholarship recipients was David Oaks, director of the National Support Coalition International, based in Eugene, Oregon.

Oaks, a Harvard graduate who suffered a psychotic episode as a young man, is staunchly opposed to psychiatry. He talks about having been a "guinea pig" for doctors and psychiatric drugs ("a hundred times worse than a bad acid trip") and vows to lead a "guinea pigs' rebellion." Oaks insists that mentally ill people can recover through diet, exercise, meditation, writing and peer support. Most dramatically, he claims to have organized what coalition members call an "underground railroad" to help patients cross state lines in order to "escape forced outpatient psychiatric drugging." A month before the Santiago conference, he helped kill several involuntary treatment bills under consideration by the Oregon legislature. [Excerpt from pages 48-49.]

Alternatives '99: The Guinea Pigs' Rebellion
Since 1985 CMHS has funded an annual consumer-survivors' conference called Alternatives. At one Alternatives conference a psychologist named Al Siebert presented a talk entitled, "Successful Schizophrenia—The Survivor Personality," advertised in the conference program as a discussion of "how schizophrenia is a healthy, valid, desirable condition, not a disorder." According to Siebert: "Schizophrenia has never been proven to be an illness or disease. What is called schizophrenia in young people appears to be a healthy transformational process that should be facilitated instead of treated." How ironic that CMHS is supporting a movement that minimizes the severity of mental illness and discourages the treatments and programs for which CMHS itself, in its role as the government's administrator of public funds for mental health treatment, is paying.

I attended the four-day Alternatives '99 conference in Houston in October of that year. There were seminars on grassroots organizing and on creating openings for consumer-survivors on the boards of managed care organizations and other social services agencies. Consumer-survivors were given ample instruction in how to lobby congresspeople, stop involuntary commitment bills and get more funding from the federal government. Everyone seemed to agree that the state-level success of the consumer-survivor movement had to be replicated at the national level.

There were a number of distractions during the four-day event: poetry readings, clay-molding sessions, group skits. Perhaps appropriately, the nearby Caruso Dinner Theater was putting on a production of Shear Madness. I also heard dozens of personal testimonials about the abuses of the "system" and the triumphs of self-help. The Memorial Wall was meant to be a palpable reminder of the failure of organized psychiatry. Mounted on three huge poster boards were scores of colored three-by-five cards, each a remembrance of someone who had died. "Dickie Dow, Portland, Oregon. Consumer killed in police custody, Fall 1998," read one. "Rupert: a good friend and next door neighbor—from all of us, Merit Hall, Long Beach." "In Memory of Jacky Jachner: Your star shined brightly, Barbara." It was a sad and touching display, yet I could not help but wonder how many of these people would have still been alive if involuntary treatment laws were more widely in use.

To concede that involuntary treatment is sometimes necessary, however, was beyond the capacity of these consumer-survivors, who already felt so subjugated and powerless. In fact, a major theme of the meeting was that consumer-survivors are the "last minority." "I've always been struck by the similarities between our struggles and those of women, minorities and homosexuals," said Jean Campbell, a consumer-survivor who is on the faculty of the University of Missouri School of Medicine in Columbia. "We are all disempowered, stigmatized, discriminated against, denied our humanity." [Excerpt from pages 50-52.]

A Brief History of Consumerism
The radical consumer-survivor movement grew out of the 1960s liberationist ethos, which saw mental patients as a class of social dissident and psychiatry as an agent of social control. In the words of the Marxist social critic Herbert Marcuse, psychiatry was seen as "one of the most effective engines of suppression." Explanations for the origins of psychosis abounded. Some implicated psychiatry itself. According to Erving Goffman, author of the influential Asylums (1961), the mental hospital itself imposed "abasements, degradation, humiliation and profanations of the self," reinforcing the psychopathology it was meant to cure. R. D. Laing, a Scottish psychiatrist, thought of psychosis as a rational adaptation to an insane world. In the popular culture, films like King of Hearts (1966) and books like Ken Kesey's One Flew over the Cuckoo's Nest (1962) sentimentalized the insane as embodying truth, spontaneity and innocence, their souls crushed by stone-hearted authoritarians. "Every psychotic is a potential sage or healer," wrote the physician Andrew Weil, later famous as an alternative medicine guru, in his 1972 book The Natural Mind.

By 1974 the number of patients in psychiatric hospitals had been more than halved, from slightly more than five hundred thousand in the mid-1950s. Once released, many of these ex-patients gravitated to one another. "In daily life they were shunned and stigmatized," write Rael Jean Isaac and Virginia Armat in Madness in the Streets. They found solace in "an ideology that cast them as romantic figures combating oppression, individuals whose perceptions of the world had equal if not greater validity than those of 'sane' society." [Excerpt from pages 60-61.]

The Consumer-Survivor Code of Silence
To be sure, not all psychiatric patients oppose involuntary treatment, reject psychiatric medication or regard mental illness as a transformative experience. "You get excommunicated from the consumer-survivor movement if you speak against the status quo," says Eve, a former psychiatric patient who works with a visiting nurse service in New York City. Most of her patients suffer from schizophrenia or manic-depressive illness. Thirty-eight, married and the mother of a seven-year-old daughter, Eve spent much of her late adolescence institutionalized. After her daughter was born, her postpartum depression was treated with ECT. Several years later she suffered another bout of depression and agreed to have ECT again. Now she takes an antidepressant and a mood stabilizer and is doing well. Like Ken Steele, she calls herself a consumer-survivor, but unlike Steele, Eve feels that she has to go along with the party line. She refused to let me use her real name.

Eve was once active with the radical consumer-survivor movement but has pulled back because, she says, "it is too closed-minded." But she is reluctant to disagree openly lest she be frozen out altogether. She departs from the consumer-survivor party line in two ways. She favors involuntary commitment (about half of her patients are under court order to receive treatment and take medications), and she sees value in ECT. Eve tells of a tenant of a housing program who stopped his antipsychotic medication, began hallucinating and went back to using crack cocaine. Psychotic and aggressive, he got into a fight and broke his arm—a stroke of luck since it landed him in the hospital. Otherwise, Eve says, the housing director would have "just let him deteriorate, because that was what her politics said she should do." Eve didn't protest—she knew it wasn't right to let the man remain so sick, but she also didn't want to get fired for being a troublemaker. [Excerpt from pages 66-67.]

Denying the Reality of Mental Illness
The vast majority of severely mentally ill people can lead safe and comfortable lives in the community as long as they continue to take medication to control such psychotic symptoms as hallucinations and delusional thinking. Without medication, however, they risk the fate of Margaret Mary Ray. That's why outpatient commitment was developed. Such intervention can also interrupt the downward spiral into violence. True, only a small percentage of psychotic individuals ever inflict serious bodily harm—and when they do, it is mostly upon other family members—but the assaults and killings that do occur are tragedies that often could have been avoided.

The potential for violence is a reality of mental illness that we don't hear very much about. In 1998, however, a MacArthur Foundation study found no difference in commission of violent acts between a sample of mentally ill people and the general population. This was a predictable finding since the study largely excluded subjects with the greatest potential for aggression, but it was touted as a refutation of the "myth" that mentally ill people pose a greater threat than the rest of us. "It's time we kill our cultural fantasy of deranged psychotic killers on the loose," said the president of the National Mental Health Association following the study's publication in the Archives of General Psychiatry. But the well-documented fact is that psychotic individuals not taking medication are indeed more prone to violence. Thirty years of data show this. A study of three hundred patients discharged from California's Napa Valley State Hospital between 1972 and 1975 showed that their arrest rate for violent crimes was ten times higher than that of the general population. In Finland the risk of committing homicide was seven to ten times greater among individuals with schizophrenia than it was among the general population. According to the Department of Justice, approximately one-quarter of all offspring who kill their parents have a history of serious mental illness. As Professor John Monahan of the University of Virginia School of Law summed it up:

After years of denying the association between untreated mental illness and aggression, the National Alliance for the Mentally Ill has come full circle. Carla Jacobs, an alliance board member from California, became an activist for involuntary commitment after her mother-in-law was fatally stabbed and shot by a mentally ill relative. "We used to think it was stigmatizing to acknowledge violence," Jacobs tells me. "Now we recognize that violence by the minority tars the majority and makes communities less likely to welcome the community-based housing that can facilitate treatment and reduce violence." Too many of our relatives are hurting others and winding up in jail, she laments. "The first step to helping the mentally ill lies in admitting there is a problem." [Excerpt from pages 68-69.]

The True Shame
In 1948 Albert Deutsch shocked the world with Shame of the States, his expos� of abuses in state psychiatric hospitals. The horrors he described have mostly disappeared, although newspapers still carry the occasional investigative account of abuses in a state facility. In the dystopic worldview of the radical consumer-survivors, however, the mental health system remains a snake pit. Yet that very system provides the money with which they have financed a small industry of grievance and entitlement. It is the same hated system that has bent over backward to create places for consumer-survivors in its organizational charts. So much for oppression.

The point of imposing treatment is to help patients attain autonomy, to help them break out of the figurative straitjacket binding thought and will. So many people with untreated schizophrenia become incapable of facing even the modest challenges of ordinary life, much less exercising their rights as individuals. Being required to take medication is hardly a violation of the civil rights of a person who is too ill to exercise free will in the first place. The freedom to be psychotic is not freedom.

As a psychiatrist and a taxpayer, I find it a tragedy that consumer-survivors spend their time and energy—and public funds that could be going to patient care—fighting against policies that can help thousands who are far sicker than they are and, one hopes, will ever be. I realize that the political fight may itself be a form of therapy for consumer-survivors: it gives them focus, identity and a social network. It funnels their energies and large reserves of anger. They are right to want a sense of purpose; we all need one. But the price of their "therapy" must not be paid by the very people they purport to protect.

I must also reserve criticism for the mental health administrators, some of whom are psychiatrists. Tragically, they seem willing to sacrifice the needs of those with the most severe illnesses to political correctness and to the expediency of placating the vocal and annoying consumer-survivor lobby. We have more effective treatments, both social and pharmacological, than ever in the history of psychiatry, and it is a shame when ill people are denied them. By supporting consumer-survivor activities—or by simply saying nothing when they are given funding or administrative control—mental health administrators are promoting a movement that has had disastrous consequences for people with severe psychiatric illness. [Excerpt from pages 75-76.]

When we started discussing the possible formation of a Treatment Advocacy Center almost three years ago, friends warned that we were taking on a difficult—perhaps impossible—task. They said we would be strongly opposed by the civil libertarian lawyers, well meaning but psychiatrically na�ve individuals whose knowledge of mental illness had come primarily from the writings of Thomas Szasz. We would also be opposed by a small but noisy group of ex-patients who called themselves "psychiatric survivors." And always, behind the scenes, there would loom the virulently anti-psychiatry Church of Scientology and its Citizens Commission on Human Rights (CCHR), whose founder, L. Ron Hubbard, taught that the forces behind psychiatry come from other planets.

My friends were correct in the opposition we have faced. But despite such opposition, I can say that helping to set up the Treatment Advocacy Center is one of the most important things I have ever done. And, I am reminded of why it is important on a daily basis.

Minnesota and California are cases in point. In both states it is virtually impossible to treat an individual with schizophrenia or manic-depressive illness unless the person voluntarily agrees to treatment. Never mind the fact that multiple studies have shown that approximately half of such individuals do not know that they are sick. Many of these individuals will never accept treatment voluntarily, because they are certain that the CIA really did implant electrodes in their brains, which cause their voices. The physical illness of their brain has affected the part of the brain that governs self-awareness. They are biologically unable to understand that they are sick and need treatment.

Both Minnesota and California had state legislation introduced in 2000 to amend their treatment laws so as to make it easier to treat such individuals before they become homeless, commit misdemeanors that land them in jail, or become violent. State Representative Mindy Greiling introduced the bill in the Minnesota legislature, and State Assemblywoman Helen Thomson headed the legislative effort in California. And in both states, the legislation was blocked by opposition forces.

So what difference does it make? For many citizens in both Minnesota and California, the failure to enact modern treatment laws makes a very big difference-the difference between life and death. In Minnesota, for example, on November 1, Alfred Sanders was killed by the police after he threatened them. Less than 24 hours earlier, Sanders' family had attempted unsuccessfully to have him psychiatrically hospitalized and treated because of his severe mental illness. In October, Lawrence Dame, another Minnesota man who was receiving no treatment for his severe mental illness, killed his sister and four members of her family. On the last day of the year in Duluth, Thomas B. Dougherty, who had a history of mental illness and had been hospitalized twice in the last year, shot himself and his girlfriend.

In California in November, Steven Abrams, who had deliberately driven his car into a playground killing two children in an effort to stop his auditory hallucinations, was sentenced to life in prison. In October, Gabriel Estrada, who had stopped taking his medication for schizophrenia, stabbed a neighbor to death. Also in October, Jared Essig, overtly delusional and untreated, stabbed one of his professors at Pomona College. In September, Jonathan Baker, suffering from a severe psychiatric disorder and having stopped his medication, was killed by police after he stabbed a guard in an emergency room. And in September, Marie West, diagnosed with manic-depressive illness but not taking her medication, deliberately ran her car into an elderly man, killing him.

These are just a sampling of the tragedies in Minnesota and California from the closing months of this year. They are merely the tragedies that came to public attention. They don't include the thousands of daily tragedies of severely mentally ill individuals who are homeless and seeking food in garbage cans in Minneapolis and San Francisco. Or the thousands of individuals with schizophrenia and manic-depressive illness who have ended up in the county jails of Minnesota and California because they did not receive treatment for their illness.

Almost all of these tragedies could have been prevented if Minnesota and California had enacted modern treatment laws. That is the lesson from Minnesota and California, and that is why the Treatment Advocacy Center exists.

In 2001, concerned legislators like Mindy Greiling and Helen Thomson will again introduce legislation to update their state treatment laws. The Treatment Advocacy Center will provide support for their efforts, as we did in New York in successfully getting Kendra's Law passed. We will also support efforts in other states in which citizens have seen enough of these tragedies. In a civilized society, such tragedies should not be happening. The Treatment Advocacy Center will continue to play an essential role in these efforts; and, I am proud to be part of it.

Kendra's Law has withstood a serious judicial attack. An action, In re Urcuyo, 2000 NY Misc. LEXIS 417 (NY Sup. Ct. Sept. 20, 2000), was brought in Kings County Supreme Court that could have resulted in New York's assisted outpatient treatment law being ruled unconstitutional.

More specifically, attorneys for Mental Hygiene Legal Services, contended that the eligibility standard for Kendra's Law violates the right to refuse treatment of those subject to it because it does not include a separate determination of whether a person placed in the program is competent to make informed medical decisions.

Instead, the focus of the assisted outpatient treatment law is people who are, among other criteria, unlikely to comply with treatment and likely to become a danger to themselves or others if they do not maintain treatment. To be eligible for an assisted outpatient order, a person must also have had non-compliance result in his or her being hospitalized twice in the last three years or an act, threat, or attempt of violence in the last four years.

This standard is designed to catch those who Kendra's Law is meant to help-people with mental illness who rotate through New York's hospitals, jails, and communities because the law did not before provide sufficient supervision and support for them to recover to the point of being able to effectively manage their medication. As a consequence, the criteria place more emphasis on the person with mental illness' recent clinical history rather than, as the Court was urged to rule was mandatory, concentrating exclusively on his or her present state of mind.

For Justice Anthony Cutrona to invalidate the present standard would have left Kendra's Law crippled and effectively useless. But the Justice did not. He issued what should be a resonant endorsement of Kendra's Law, ruling it consistent with both New York and federal law.

Encouragingly, Justice Cutrona seemed to give as great attention to how assisted outpatient treatment benefits those overcome by mental illness as he did to the public safety justifications presented for the law. He pronounced that, "Kendra's Law is a means by which patients who have such a history can be discharged to the community with the supervision and assistance they need to avoid decompensation and rehospitalization," which is exactly what it is meant to do.

As it was not decided by New York's highest court, this case does not preclude future challenges to Kendra's Law. However, Justice Cutrona developed his decision, research, and opinion with exacting detail. It will take a strong-willed judge to go against the ruling in Matter of Urcuyo (James D.).

Respect is due to the New York City Law Department and Attorney General Eliot Spitzer's Office for their able handling of this case. And, the Center for the Community Interest should be especially commended for the remarkable "friend of the court" brief that it filed and with which NAMI New York State and the Treatment Advocacy Center were a part.

Editor's note: In a separate case on December 18, 2000, Queens, NY Supreme Court Judge Charles LaTorella ruled Kendra's Law constitutional "in all respects." The judge wrote:

Kendra's Law is a response by the Legislature to a tragic situation, which had its origins in a serious void in New York's system of caring for the mentally ill. That void arose from the fact that certain patients, who no longer posed a danger to themselves or others while in the hospital and accepting medication and treatment, stopped taking their medication upon release . . . [and] would once again constitute a danger to themselves or others, sometimes with tragic results.