“I sit on a man’s back, choking him and making him carry me, and yet assure myself and others that I am sorry for him and wish to ease his lot by all possible means — except by getting off his back.” Leo Tolstoy, Writings on Civil Disobedience and Nonviolence (1886)
This article is about coercion in its various forms – that which is direct, unequivocal, almost thuggish, and that which is more subtle, usually masked as well-meaning, referred to by David Oaks as “velvet gloved.” The Tolstoy quote above, which was sent to me by a friend and colleague, Diana Gonzalez, aptly sums this up. This article is also about the upcoming struggle over New York’s involuntary outpatient commitment law, Kendra’s Law, and which of the principal stakeholders of New York’s public mental health system — professionals, providers, family members, bureaucrats and politicians, peer/survivors and their advocates – will line up for, and which against.
New York State’s involuntary outpatient commitment law, Kendra’s Law, sunsets in 2015. The State legislature will then have to debate whether to extend it, make it permanent or end it. Some well-meaning stakeholders, the putative “velvet glovers”, are sure to support Kendra’s Law continuation, believing that persons labeled as seriously mental ill who are treatment resistant, i.e., refuse psychoactive medications, are incapable of making informed decisions for themselves. These are the anosognosia adherents, foremost among which is NAMI, and I’ll talk more about that phenomenon further down. Then there are the well-meaning “velvet glovers” who oppose the continuation of Kendra’s Law beyond 2015, but do endorse the biomedical model and psychoactive medications as essential to the treatment of persons presumed to be seriously mentally ill. I number among this cohort most of the State’s non-profit service providers and NYAPRS, the largest peer advocacy organization in the State. I’ll explain below why these two positions, anti-Kendra’s Law and pro-biomedical model, concurrently held, are contradictory.
Finally, there are some advocates for Kendra’s Law permanency who present themselves as more punitive than benign. I’m referring to E. Fuller-Torrey and his acolyte, D.J. Jaffe, who unapologetically push the proposition that unmedicated persons considered to be seriously mentally ill are dangerous persons. Since I have no interest in preaching to the choir, viz., those of us who are uncompromising opponents of all forms of coercion, you are free to use whatever I write here for your own ends. I’m directing this article principally at those who presumably mean to do no harm as well as to those who do. I’ll start with the latter, by far the more compelling as mean-spirited folks usually are.
For the past twenty-five years and more, E. Fuller Torrey has pushed the notion that persons diagnosed with serious mental illnesses, particularly schizophrenia, are so dangerous and potentially violent that they must be treated, i.e., medicated, with or without their consent. His basic strategy has been to pursue, state by state, the passage of outpatient treatment commitment legislation, which effort has been facilitated by his long collaboration with NAMI and by his Treatment Advocacy Center, founded by him in 1998. He has been quite successful in this endeavor – to date, 42 states have passed involuntary outpatient commitment laws – and he appears to have set his sights on Kendra’s Law and changing its status from temporary to permanent.
A preview of his pursuit of that objective was on display this past summer, when two police officers were stabbed by persons presumed to be mentally ill and a great clamor was raised in much of the media to expand Kendra’s Law. Civil rights and peer/survivor advocates rallied and beat back the effort, convincing State legislators that the expansion of treatment services was the more effective remedy not the addition of coercive amendments to the existing Law. Perhaps not the ideal response for those of us who’d prefer to see the mental health system shrink, but an indication of the continuing influence of civil libertarian arguments in liberal New York.
Torrey’s key collaborator has been, for years, D.J. Jaffe, executive director of Mental Illness Policy Org, whose background, fittingly enough, is in advertising. Jaffe has proved adept at generating media coverage by attaching his and Torrey’s attempts to promote outpatient commitment laws to horrific events, usually the death or assault of young women or police officers at the hands of allegedly deranged persons. Hence, Kendra’s Law in New York and Laura’s Law in California. In short, their fundamental strategy is rooted in fanning people’s fears. To quote Jaffe, “From a marketing perspective, it may be necessary to capitalize on the fear of violence to get the law passed. “ It’s all very Strangelovian and reminiscent of the Cold War era depicted in Kubrick’s masterwork, “Dr. Strangelove, or How I Learned to Stop Worrying and Love the Bomb” (1964).
For those of you who may not know, Strangelove was modeled on Herman Kahn, a very rotund person whose nickname was the “Fat Man” (not to be confused, by unhappy coincidence, with the A-bomb dropped on Nagasaki).
Kahn was the RAND Corporation strategist responsible for developing the U.S. government’s nuclear deterrence policy, which was based on an absolutely absurd proposition that the U.S. would be willing to absorb a first strike from the Soviet Union, suffer the loss of millions of its citizens and still be capable of striking back. Kubrick assiduously read the tome – 600+ pages – that Kahn wrote detailing U.S. policy, “On Thermonuclear War,” that supplied the movie with some of its most memorable phrases: “mutual assured destruction” or “MAD”, originally and ironically coined by John von Neuman, who worked on the Manhattan Project; “doomsday machine”, which would put “MAD” into play but was actually a ruse designed by Kahn to bluff the Soviets; and Strangelove’s soliloquy on fallout shelters built deep into mountainsides to ensure the survival of the best and the brightest, i.e., the whitest, no Jews allowed. (In real life, Nelson Rockefeller considered sinking hundred foot shafts into Manhattan schist, probably to protect other Rockefellers and their friends.) Kahn scared half the country half to death; Kubrick poked fun.
Fuller Torrey and Jaffe have added a third absurdist to their mix, Xavier Amador, the entrepreneurial psychologist who has popularized the term “anosognosia” while distorting its meaning. Anosognosia refers to brain cell changes that occur in the right pre-frontal and parietal lobes and result in a lack of awareness on the part of the affected person of cognitive or bodily impairments, e.g., impaired memory, language or math skills, emotions or body movements. These impairments are invariably due to brain trauma from a head injury, vascular changes consequent to a stroke or a progressive brain cell decline as seen in Alzheimer’s disease or related dementia. Amador and his adherents have propagated the notion that anosognosia is implicated in impaired “insight” on the part of persons diagnosed with serious mental illnesses and accounts for these persons’ inability to accept their illnesses and their need for treatment. After all, serious mental illnesses are brain diseases and all psychiatric anosognosiacs need treatment, particularly medication, whether they know it or not and whether they consent to it or not.
Is there a test, you ask, to determine whose pre-frontal and parietal lobes are deteriorating and who has anosognosia? Well, no, not while you’re alive. But there is a verbal quiz that any interested party can administer. Given my infatuation with the ‘60’s, let’s call it, with a nod to Joe Heller, the Catch 22 Quiz. Simply ask a person you presume to be mentally ill if the person is mentally ill, and if the person says he/she is not he/she is. In other words, if other people think you’re crazy and you think you’re not you are! Fuller Torrey, Jaffe, NAMI and the discerning Dr. Amador have this plastered all over their websites. Amador has a worldwide bestseller, “I Am Not Sick, I Don’t Need Help,” that he’s been pushing since 2000 and has started the LEAP Institute to promote the LEAP approach, which I assume is an outgrowth of Amador’s bestseller. No, I don’t know what LEAP stands for and can only say “Yossarian, where are you now that we really need you?”
The ever-evolving Jaffe’s new turn is to pose as a libertarian (of the right wing variety) and argue for lower mental health expenditures by government if the right people — the five percent of folks labeled as mentally ill who Jaffe claims are prone to violence — are given IOC orders and obliged to be in treatment, i.e., take psychoactive medications. This past August, he engaged in a back-and-forth with Jeffrey Schaler, a Szaszian libertarian, in Cato Unbound, the Cato Instititute’s Journal, and published a rebuttal to Schaler entitled “A Libertarian’s Proposal to Reform Involuntary Commitment.” Since Jaffe clearly endorses the biomedical model and the coerced medication of persons with serious mental illnesses (italics mine), his libertarian claims seem dubious, but were made anyway. Chutzpah is no doubt his strong suit.
I took the trouble to read Jaffe’s rebuttal, checked out the references he cites to buttress his analysis and concluded the following, which I detailed in an e-mail sent to several peer/survivor advocates and think is worth repeating:
“I read Jaffe’s and related articles published in Cato Unbound, the Cato Institute’s journal + several of the sources cited by Jaffe in his long letter. First, Jaffe’s approach is not libertarian in the slightest; merely having something published in a libertarian journal and wishing it were so does not meet the libertarian litmus test of no government involvement, period. Tom Szasz is still their hero, at least for now. Jaffe is more a minion of Dr. Strangelove, E. Fuller Torrey, who propagates fear and hatred of crazy people and acts as much a surrogate of the National Security apparatus as of the public mental health system. To read Jaffe is to read a less strident Fuller Torrey, someone wedded to the biomedical model who wants only the truly deserving to be assigned an AOT order, viz., the 5% who are truly violent(?). Which leads to the second problem/issue re Jaffe — most of his statistics, particularly those related to presumed cost savings consequent to AOT, come from his own organization, Mental Illness Policy Org. These, too, appear based on wishful thinking and have a Paul Ryanesque air about them. Much like Ryan, when you read his numbers, they sound convincing if you take them at face value. When you actually investigate them — note #42 refers to a “data sheet” prepared by MIPO — the presumed monetary saving attributable to AOT are all suppositional: e.g., ‘people never hospitalized on AOT,’ which assumes a causal relationship to AOT but presents no evidence to rule out sheer coincidence. Etc., Etc. His other key supporting references — #40 & 41 — are articles that appeared in Psychiatric Services October, 2010, Special Section on AOT in NY State. Here again, he twists and exaggerates the presumed research findings of the several articles published as follow-ups to the Duke 2009 study re AOT’s effectiveness. To just give one example: in the Conclusions section of ‘Effectiveness and Outcomes of AOT in NYS’, the authors clearly state … ‘assisted outpatient treatment clients also received other enhanced services … We cannot conclude which of these elements of the package deal contributed most to the generally positive outcomes for participants. WE THEREFORE CAUTION AGAINST USING OUR RESULTS TO JUSTIFY AN EXPANSION OF COERCION IN PSYCHIATRIC TREATMENT’ (capitals mine). Jaffe, as befits someone with an ax to grind, pointedly ignores this caveat.
Does Jaffe present a threat? Only in the same way that Fuller Torrey does, propagating fear under the guise of promoting pubic safety.’
Need any more be said?
Let’s turn to the well-meaning stakeholders of this story, some of whom are proponents, others opponents of IOC, involuntary outpatient commitment. To paraphrase David Oaks, these are the folks who use the “velvet glove” approach, the soft and caring approach, to convince their clients or patients that the public mental health system is a benign entity and environment, interested in promoting the recovery and well-being of those charged to its care. This was the approach that I employed during my forty-year long stint in the mental health system as practitioner, educator and administrator. As I’ve written elsewhere, I had a direct hand in the implementation of the Intensive Case Management Program in New York City, writing all the training curricula in 1988, eventually directing one of the largest ICM programs in the City from 1993 to 2010. I believed then as I still do now that kindness and acceptance are key elements in any treatment of persons whose lives have been turned upside down because of emotional turmoil and who fear they’ll never set themselves right again. The kicker is the psychoactive medications that “velvet glovers” cajole their charges to take. Kindness becomes seduction and free choice becomes an illusion. More on this below.
In 1993, I was an adherent of the biomedical model and had been since the late 1970’s. I believed that psychoactive medications, particularly the neuroleptics prescribed for persons diagnosed with schizophrenia and bi-polar disorders, were essential to their treatment. I abandoned this belief after more and more of our case management clients began to die of natural causes at surprisingly young ages. My eureka moment occurred in 2006 when our QA Committee stumbled on the CATIE and NASMHPD studies, which clearly linked the atypical neuroleptics to the onset of diabetes and cardiac disease and a twenty-five year loss of life expectancy in those prescribed them. We soon found out that several of our clients, who had experienced enormous weight gain and were suffering from diabetes and/or heart disease, were also parties to one of the first of many Zyprexa lawsuits brought against Eli Lilly, its manufacturer. We also found out that we were the only mental health organization in the State to voice public concern about the apparent causal link between the atypicals and the early deaths of persons who took these medications. Not a peep from the “velvet glovers” – or the State or the non-profits or NYAPRS, the pre-eminent peer advocacy organization in New York — and their silence continues to the present.
I’ve posted several accounts in the past two years of the analyses we made and actions we took and so will not re-hash them here. For any reader interested, I have referenced them at the end of this article. Suffice to say that we rejected a “wellness” approach, which, in our estimation, placed all responsibility for change on those who were being victimized. Rather, we decided to train our fifty case managers conjointly with fifty of their clients as primary health care advocates. We couldn’t tell our clients to stop taking their medications: clients would have been placed at risk; we, certainly I, would have been fired; and the program might have been closed down or awarded to another provider agency. So we told them the possible consequences of taking an atypical over an extended period of time, and laid out for them the steps they could take to protect themselves and their health. Once trained, their primary objectives would be to secure the collaboration of the clients’ primary care physicians and their psychiatrists – hence, Integrated Collaborative Care Management; to secure the initiation by either physician of the Metabolic Syndrome Monitoring Protocol, endorsed by the American Diabetes Association as the most effective way to determine damage to an individual’s metabolic system; and, assuming abnormal metabolic values, to press their psychiatrists for suitable alterations in their medication regimens – gradual reduction, cessation or change from one medication to another with less adverse side effects.
Tracked over a two year period, our results were encouraging but mixed. Those clients who participated in the eight-session training program benefited immensely. As one trainee put it, “we learned to ask questions and get answers.” As system change agents, we proved to be too small a program to push such a large rock up such a steep hill. In 2010, the State, in its pursuit of “integrated care”, the new health care catch phrase, launched an Obamacare-promoted initiative, “health homes”, to serve the primary and behavioral health care needs of those persons presumed to have serious mental illnesses. To clarify, “health homes” are not physical structures but actually comprised of a series of providers connected via complex IT systems. As I had anticipated, as per articles also referenced below, the new health homes have proved cumbersome and bureaucratic and are still struggling to get off the ground. And while their protocols governing medical treatment do acknowledge the vulnerability of the homes’ patients to diabetes and heart disease, no mention is made of the direct link between those illnesses, their patients’ increased risk of death and the atypicals. Our “velvet glovers” remain scrupulously silent.
We began receiving our first AOT referrals in 2000, shortly after the legislated requirements of Kendra’s Law began to be implemented. For the first time, the case managers were obliged to count the contents of clients’ pill bottles in an effort to enforce the medication compliance mandates that were invariably contained in all court treatment orders. The clients could have been — and some undoubtedly were – tossing their meds down the toilet, but the message delivered was unmistakable, viz., that all AOT clients had to do what the courts ordered them to do; as did all providers. The pill-counting requirement was soon extended by the State Office of Mental Health (SOMH) to include all case management clients: SOMH had bought into the notion that an unmedicated client is a dangerous client and began propagating it.
Our program, like many others in the City and State, originally opposed Kendra’s Law when it was first proposed, viewing it as a violation of our clients’ civil rights. I gave public testimony to that effect, underscoring the irony that the civil rights of persons considered seriously mentally ill had been restored little more than twenty-five years earlier when deinstitutionalization was at its peak. Kendra’s Law, once passed, would take away what had so recently been gained. Once the law was passed, however, we, just like our clients issued AOT orders, had to obey the law and comply with court orders. Indeed, if clients were found by State Office of Mental Health field/compliance officers to not be following their court orders, provider agencies purportedly serving them were declared “out of compliance”. The usually unstated implication of such a finding for the agencies was that funding reprisals might follow if their performance in securing client adherence to their AOT orders did not improve.
For our part, this made our case managers’ jobs easier, since clients who had been previously considered “treatment resistant” and had been denied access to service providers on that basis, now had to be accepted for admission. The Duke AOT follow-up study issued in 2009 documented “improved access by persons with serious mental illnesses to necessary services” as one of the triumphs of the program. The opportunistic Mr. Jaffe, already in the first stages of his campaign to discredit potential IOC opponents, has contended that this constitutes evidence that, when push comes to shove in 2015, New York’s provider agencies will vote their self interest and oppose Kendra’s Law’s permanency or its extension. He’s advanced the argument that providers prefer a return to pre-1999 days when they could “cherry pick” (his phrase) those whom they would serve with less strain and pain. They, too, like those clients who can’t recognize their need for treatment, must be obliged, coerced if you will, to provide it.
Jaffe, in my estimation, has misjudged the situation. Provider agencies, to witness their recent behavior, see their interests as allied with those of NYAPRS and its supporters. I anticipate that, come 2015, they will again collaborate with NYAPRS as they did this past summer, seek to block Kendra’s Law being made permanent or extended, and hold forth to the legislature as the most effective and humane alternative the expansion of community-based services. (A worse-case scenario would be their agreement to a political deal where Kendra’s Law would be extended and mental health services expanded. This is what occurred when Kendra’s Law was first enacted in 1999 and New York’s community-based services doubled in size.)
Unfortunately, while the likelihood is that the provider agencies and NYAPRS will oppose court-ordered treatment, including psychoactive medications, for their clients, there is no evidence that they will abandon any time soon the biological model or their practice or implicit support of the “velvet-gloved” coercion providers have been employing since the State laid the foundation for community-based treatment over thirty years ago. In short, I anticipate they will continue to purposefully ignore the causal links between psychoactive medications, particularly the atypical neuroleptics, and early death and potentially fatal illnesses. The current article of faith is that these consequences are primarily due to the dysfunction of the persons prescribed these medications and to the bias against them on the part of the health care providers where they generally seek treatment. Accordingly, I can only assume that provider agencies and NYAPRS would ignore the research being undertaken in Great Britain that is uncovering a causal link between all neuroleptics, the first generation neuroleptics as well as the atypicals, and the increased likelihood of violence on the part of individuals prescribed them.
I’ve included discussions of violence in several of the articles I’ve written, the most recent of which, referenced below, was posted on this site on June 29. In that article, “NYS’s AOT Program: Racial Myths & Other Stereotypes,” I cited Choe, et al’s article (2008), a review of the pertinent literature, which detailed the prevailing wisdom that persons presumed to have serious mental illnesses are more likely to be victims of violence than perpetrators. It also linked violence by these persons to drugs and alcohol. In a more current literature review, Fazel, et al (2009), reported similar findings. In another “eureka” moment, I recently read the article that two of my fellow MIA bloggers, Catherine Clarke and Jan Evans, posted on the MIA website on August 19, where they explained that all neuroleptic medications can produce toxic behavioral effects, principally akithisia, agitation and restlessness; which, in turn, can result in violence on the part of the individuals prescribed them. Specific conditions resulting from prolonged neuropletic dosing – neuroleptic withdrawal; neuroleptic serotonin disruption, i.e., mood disturbance; and neuroleptic acetycholine disruption, i.e., disruption of the flight or fight mechanism, to name just three – increase the risks for acts of violence by those affected. Similarly, persons prescribed neuroleptics who are “poor metabolizers” of these medications are also at greater risk for committing violence. As per the data, the single largest group of poor metabolizers is comprised of persons of black African descent. In Great Britain, these tend to be ethnic Jamaicans and sub-Saharan Africans.
The 2009 Duke AOT evaluation study revealed that African-Americans in New York were five times more likely to receive an AOT order than whites. In the June 29 posting I referred to above, I challenged the assertion by the study’s authors that the disproportionate number of AOT orders issued to African-Americans was attributable to “ … upstream social and systemic variables such as poverty that may correlate with race. However, we find no evidence suggesting racial bias …” In rebuttal, I alleged pervasive institutional racism, citing in support the recent work of Jonathan Metzl (2010) and Michelle Alexander (2010). What might happen, then, if fewer African-Americans were prescribed fewer neuroleptics at lower dosages for shorter periods of time? Would fewer receive AOT orders; be diagnosed as having schizophrenia; be associated with acts of violence? In short, are the very medications African-Americans are being prescribed increasing their vulnerability to forced drugging and incarceration, in hospitals or jails?
Please note that I am not opposed to the use of psychoactive medications by persons who might derive some benefit from them, so long as these persons freely choose to take them. This requires, of course, that the medications be presented to prospective beneficiaries in the most transparent manner possible, with clear exposition of likely risks and realistic estimates of likely benefits. Unfortunately, the very opposite is more likely to happen. To echo what I wrote above, psychoactive medications are invariably prescribed in too high doses for too lengthy periods of time, with apparent disregard for attendant risks. Further, they are usually prescribed by practitioners, psychiatrists in the main, who have too little time to properly engage the persons they presume to treat, and whose police power, i.e., the power to incarcerate in psychiatric hospitals against their will persons who come seeking help, serves as a barrier to effective engagement. Finally, psychoactive medications are assigned too much importance in the continuum of available treatments, with too little to psychosocial interventions, including psychotherapy and the mobilization of family and community support systems. This is the opposite of what actually is required, since the causes of most problems that disrupt people’s lives can be traced not to their brains but to their environments, principally to the trauma, poverty and racism they have experienced in their lifetimes. In short, effective treatment or help requires jettisoning the biomedical model; assignment of medication to an adjunctive role; and recognition of psychosocial interventions as central to address what Szazs termed “… the bitter pill of moral conflicts in human relations.”
Given the foregoing, will I and like-minded persons be able to work with the “velvet glovers” to oppose the continuation of involuntary outpatient commitment in New York State? By all means and for so long as they maintain their commitment to that goal. I would also ask them to take to heart the C.S. Lewis quotation that Judi Chamberlain used to end her on-line debate with Fuller Torrey sometime shortly before her death in January, 2010: “Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive … those who torment us for our own good will torment us without end for they do so with the approval of their own conscience …”
In closing, those of us who oppose coercion in all its forms can’t mourn our currently lonely position, but must start organizing now for 2015: someone needs to call a meeting! Remember, we are all prisoners of hope.
Occupy APA New York, October 6 March and Rally: I’ll be presumptuous and suggest that the folks who organized yesterday’s rally sponsor a meeting of those of us who want to see an end to involuntary outpatient commitment in New York. I’ll also nominate as chairperson of that initial meeting Dan Hazen, who did a great job mc’ing the rally across from the U.N. and getting us all over to the APA conference close to a mile away without incident. Job well done, Dan!
As for the rally and march, I’d characterize them as spirited, focused on clear objectives, viz., human rights, and warm-hearted in tone. A hundred or so folks participated; perhaps a few more joined us once we got to the APA’s conference site. The several speakers – my apologies to those I neglect to mention – were inspirational, spoke from the heart and will not be easily forgotten by those of us who heard them. Ted Chabasinski, Laura Delano, Seth Farber, John Judge, Harry Lichtenstein, Tina Minkowitz, Lisa Ortega and Will Hall. Sincere thanks. Folks from several organizations were out there filming, so look for YouTube postings.
All in all, a successful follow-up to the Occupy APA rally in Philadelphia in May. What’s next?
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Up the River: A social worker, Jack Carney writes on the contradictions and hypocrisies of the public mental health system and promotes and applauds acts of resistance to it. In the words of the immortal Joe Hill, just before he was executed by a Utah firing squad, he likes to advise: “Don’t mourn, organize!”