Consumer groups oppose the bill, saying it would weaken FDA oversight of new drugs and medical devices, allowing more drugs and devices on the market without adequate testing of their safety and effectiveness. It would also eliminate a restriction on the FDA’s use of advisory scientists with financial conflicts of interest, which had been imposed in the last FDA user-fee authorization bill Congress passed in 2007.

The Senate could pass the bill as early as next week, says Dr. Michael Carome, deputy director of Public Citizen’s Health Research Group, one of the consumer groups objecting to the bill, which made it through the House Energy and Commerce Committee last week.

The bill, as Public Citizen argues here, gives companies working on drugs for life-threatening conditions an easier pathway to approval by allowing them to use smaller studies and postpone definitive clinical trials proving effectiveness until after the drug hits the market.  Instead of being required to use end points that show the drugs are effective against the actual disease, the drug companies are allowed to use surrogate end points or markers and much smaller clinical trials to gain FDA approval. Carome argues that this will only increase the number of unsafe and ineffective drugs on the market.

The bill also eliminates a new clinical trial requirement for medical devices that are considered “follow-on” devices. Yet this requirement was imposed precisely because, as gooznews reports, the industry has been plagued in recent years by the recalls of follow-on devices such as metal-on-metal artificial hips and implanted cardio-defibrillators.

Carome tells gooznews that the industry heavily lobbied both sides of Congress to get provisions favorable to industry inserted into the new user-fee bill. And indeed both the Pharmaceutical Research and Manufacturers of America and the Advanced Medical Technology Association, which represents medical device companies, praised the bill in press releases last week.

What all of this reminds me of is the banking industry, which was busy lobbying the feds to weaken restrictions on risky trading activities even as JP Morgan Chase dove off the cliff with a risky bet on credit derivatives and lost at least $2 billion.

What’s at stake here is not just our money (JP Morgan was gambling with its own customers’ money), but the health and well-being of American citizens. Do we have to wait for another drug-related debacle (think Vioxx or Avandia or antidepressants that caused hundreds of suicides), before Congress wakes up and stops weakening the FDA’s ability to protect us?

This blog was originally posted at alison-bass.com.

The logic behind outpatient commitment laws is that antipsychotic medication is a necessary good for people with a diagnosis of severe mental illness. The medications are known to be helpful, but—or so the argument goes—people with “severe mental illness” lack insight into their disease and this is why they reject the medication.

However, if the history of science presented in Anatomy of an Epidemic is correct, antipsychotic medications, over the long term, worsen long-term outcomes in the aggregate, and thus a person refusing to take antipsychotic medications may, in fact, have good medical reason for doing so. And if that is so, the logic for forced treatment collapses.

We need to go over Torrey’s review, step by step. This may be a bit exhausting, but since his critical review can ultimately be seen as a defense of his advocacy of forced treatment, I think it will be worthwhile. In the end, we will be able to judge whether his is an honest review, or dishonest in kind, and if it is the latter, that—by itself—will reveal much about the scientific merits of outpatient commitment laws.

Part One: Diagnostic Criteria and Schizophrenia Outcomes

In my foreword to Anatomy of an Epidemic, I told of how, when co-writing a series for the Boston Globe in 1998 on abuses of psychiatric patients in research settings, I stumbled upon two outcome studies that I found difficult to understand.  Dr. Torrey opens his review by setting out to show that my curiosity about those studies was misplaced, and that my subsequent reporting on those studies was in error.

The first such study was by Harvard researchers, who reported in 1994 that outcomes for schizophrenia patients had worsened during the past two decades and were now no better than they had been a century earlier. This outcome belied what I understood to be true at that time, which was that psychiatry had made great progress in treating schizophrenia.

This is the only context for my citing this study in Anatomy of an Epidemic, as a finding that piqued my curiosity. I do not mention the study again in the book, and thus do not cite it in the chapter examining the evidence base for antipsychotics. However, Dr. Torrey claims that I do, writing that after I summarized the findings from this study in the preface, I “later added that the worsened outcomes (in recent decades) were due to the use of antipsychotic drugs.”

Since Dr. Torrey has focused attention on this study, let’s look at what the researchers found and their discussion of their findings.

In a survey of outcome studies over the past century, which were conducted around the world, the researchers reported that from 1895 to 1955, 35.4% of schizophrenia patients “improved;” that this improvement rate increased from 1956 to the 1970s to 48.5%; and then it declined. They concluded that since 1986 the “likelihood of a favorable outcome has diminished to only 36.4%, or a level that is statistically indistinguishable from that found in the first half of the century.”

In their discussion, the researchers reasoned that improved outcomes in the middle part of the century were due to both a change in diagnostic criteria that broadened the definition to include patients who were less ill at disease onset and then to the introduction of neuroleptics. They attribute the decline in outcomes, which began to show up in the late 1970s, to a decline in social services and, starting in 1980 with the publication of DSM-III, a narrowing of the diagnostic criteria for schizophrenia.

So the study has two parts: One tells of how outcomes have deteriorated  in recent times, and are now no better than they were in the first half of the 20^th century, before the arrival of antipsychotics, which seems to belie the common wisdom that the arrival of the drugs “revolutionized” the treatment of schizophrenia. At the same time, in their discussion, the researcher write that that neuroleptics helped improve outcomes, at least when they were first introduced.

As I wrote above, I mentioned this study in my foreword to explain how I got interested in this subject. The deterioration in modern outcomes, such that they were now no better than in the pre-antipsychotic era, surprised me. But I didn’t discuss this study at any length, precisely because I don’t think it provides evidence regarding the long-term efficacy of neuroleptics, one way or another.

However, there is a non-drug explanation for the improvement of outcomes in the 1950s. In the first half of the century, up until the end of World War II, eugenic attitudes toward the mentally ill in the United States, which were also seen in Britain and other European countries, dramatically affected the outcomes of people hospitalized with a diagnosis of schizophrenia. Eugenicists argued that people with schizophrenia were genetically defective, and thus they needed to be segregated from the population—i.e. kept in mental hospitals—to keep them from breeding. This idea began to take hold in the late 1890s, and once it did, discharge rates plunged. Those low discharge rates in the eugenics era would be seen as evidence that patients didn’t improve, and thus the low improvement rate up until 1945 was in large part due to this social policy.

After World War II, eugenics came to be associated with Nazi Germany and the “science” that led to the Holocaust, and thus seen as a discredited, even shameful science. The need to keep schizophrenia patients in mental hospitals for eugenic reasons began to evaporate, and that led, in the wake of World War II, to new discussions within psychiatry and our society about providing care to patients in the community. Discharge rates for first-episode schizophrenia patients immediately began to climb. For instance, a study of first-episode psychotic patients admitted to Warren State Hospital in Pennsylvania from 1946 to 1950 found that 62 percent were discharged within 12 months, and that by the end of three years, 73% were living out of the hospital. Similarly, a study of 216 schizophrenia patients admitted to Delaware State Hospital from 1948 to 1950 found that six years later, 70% were successfully living in the community. These are very high “improvement” rates, and they predate the arrival of the first antipsychotic, Thorazine, in asylum medicine.

Moreover, once Thorazine was introduced in the mid 1950s, there was one large study that looked at how the new antipsychotics affected discharge rates for first-episode patients, and it did not find that the drugs were helpful in this regard. In 1961, the California Department of Mental Hygiene reported on the discharge rates for 1,413 first-episode schizophrenia patients hospitalized in 1956, and it found that 88% of those who weren’t prescribed a neuroleptics—about half of the 1,413 patients—were discharged within 18 months. Those treated with a neuroleptic had a lower discharge rate; only 74 percent were discharged within 18 months.

Thus, if we look closely at changing discharge rates during the middle part of the century, we see that they rose for first-episode patients following World War II, when eugenic attitudes became discredited, and that the arrival of neuroleptics in asylum medicine did not increase this rate. This change in social attitude, along with broadened diagnostic criteria, is what led to the improvement in outcomes following World War II. This change in social attitude grew in the 1950s and 1960s. Deinstitutionalization, as a social policy, took hold and that led to improved discharge rates in those decades.

As anyone can see, the study does raise a question. Why are outcomes today no better than they were in the first half of the century? Doesn’t this finding belie the common wisdom that antipsychotics kicked off a psychopharmacological revolution, a great advance in care. This was a study that understandably piqued my curiosity, which is how I presented it in my book, and yet Dr. Torrey, eager to discredit Anatomy of an Epidemic, states that I cited it as evidence that antipsychotics worsen long-term outcomes.

Call this dishonesty moment number one in his review.

Next, in my foreword to to Anatomy of an Epidemic, I also wrote of how my curiosity about the merits of our drug-based paradigm of care was triggered by studies conducted by the World Health Organization, which twice found that outcomes in three developing countries, India, Columbia, and Nigeria were “considerably better” than in the United States and other developed countries. That also seemed odd—why should outcomes in poor countries like India and Nigeria be better than in the U.S. and other rich countries?

In Anatomy of an Epidemic, I then reported on the WHO findings in the chapter on antipsychotics. This, I noted, was data from a cross-cultural study, in which medication use varied. I presented the WHO data as one piece in a larger body of evidence regarding the long-term merits of antipsychotics.

Here are the findings from the WHO study that included, as part of its reporting on outcomes, the patients’ use of antipsychotics.

• Outcomes were best in the three developing countries, where only 16% of patients were regularly maintained on antipsychotics (versus 61% of patients in the developed countries.)

• The best outcomes of all were seen in Agra, India, where only 3% of patients were maintained on the drugs. The worse outcomes of all—in terms of the highest percentage of patients who were constantly ill—were reported in Moscow, and it was there that medication usage was highest.

• In a 1997 followup (15 to 25 years after the initial study), the patients in the developing countries were still faring much better. “The outcome differential” held up for “general clinical state, symptomatology, disability, and social functioning,” the researchers noted.

In his review, Dr. Torrey seeks to discredit this finding. First, he notes that he and others have argued that the difference in outcomes was due to a difference in the type of schizophrenia suffered by people in the developing countries. Second, and this is more important, he implies that the authors of the WHO studies, in response to such criticism, in 2008 backed away from their initial findings.

The WHO authors, he says, wrote that “we do not argue that the prognosis of schizophrenia in developing countries is groupwise uniformly milder.” The WHO investigators admitted, he says, that “the proportions of continuous unremitting illness . . . did not different significantly across the two types [developed and developing) of settings.”

When you read that sentence, you are led to understand that the authors of the WHO study no longer believe that outcomes in the developing countries were truly better. It seems that they now agree with their critics, which is that the better outcomes were an artifact of diagnostic differences. If that is true, it would mean that this cross-cultural study should not be seen as an instance in which patients, who were treated in settings where antipsychotics were less frequently used, had better outcomes. That is how I presented the study, and so if the researchers did indeed conclude what Dr. Torrey said they did, my presentation of that study would be in error.

So let’s look at what the authors, Jablensky and Sartorius, actually wrote in their 2008 article.

There were two WHO studies that compared outcomes in developing and developed countries, they noted. The first was known as the WHO International Pilot Study of schizophrenia, which found “markedly better outcomes of schizophrenia patients in India and Nigeria at 2-year and 5-year follow-ups.” However, at that time, the researchers concluded that the divergent outcomes—in this first study—might be the result of a difference in patient groups. Thus, they mounted a rigorous second study, known as the DOSMeD study, to investigate that possibility. This study followed all new onset cases of psychosis within a geographical area for two years.

In 1992, the WHO investigators reported their findings, and as part of their report, they divided patients into schizophrenia subtypes and compared outcomes in the subgroups. But it didn’t matter. No matter how the data were cut ande sliced, outcomes in the developing countries were much better. “The findings of a better outcome in developing countries was confirmed,” they wrote.

Now, in their recent 2008 paper,  Sartorius and Jablensky,  rather than back away from their 1992 findings,  vigorously defended them.

They noted the following results from the DOSMeD study:

• High rates of complete clinical remission were significantly more common in developing country areas (37%) than in developed countries (15.5%).

• Patients in developing countries experienced significantly longer periods of unimpaired functioning in the community, although only 16% of them were on continuous antipsychotic medications (compared with 61% in the developed countries.)

• In the study, one of the best predictors of outcome was “type of setting (developed vs. developing country.)”

• Elevated rates of early death (standardized mortality ratios) are more common in developed countries than developing ones.

So, where did Torrey’s misleading quote come from? In their 2008 report, Sartorius and Jablensky did observe that the percentage of patients with a “continuous unremitting illness” in the poor countries was 11.1 %, which was not significantly less than the percentage with this course in the rich countries (17.4%). In other words, there was a small percentage of patients in both settings that had a very bad course, but this did not reflect overall outcomes.

Dr. Torrey, in his review, was intent on discrediting the findings from this WHO study, which reported superior outcomes in poor countries where only a small percentage of patients were regularly maintained on antipsychotics. To do so, he implied that the WHO investigators now agreed with the critics of the study, when that is not true.

Call this dishonesty moment number two in his review.

Part Two:  Schizophrenia Outcomes and Medication

In this part of his review, Dr. Torrey takes aim at two longer-term studies (Courtenay Harding’s and Martin Harrow’s) and my reporting on those studies. He also takes aim at  the results reported for patients treated with open-dialogue therapy in Western Lapland, Finland, and my reporting of that program.

Courtenay Harding’s Vermont Longitudinal Study

I wrote one paragraph on this study in Anatomy of an Epidemic. Here it is:

In the late 1950s and early 1960s, Vermont State Hospital discharged 269 chronic schizophrenics, most of whom were middle-aged, into the community. Twenty years later, Courtenay Harding interviewed 168 patients from this cohort (those who were still alive), and found that 34 percent were recovered, which meant they were “asymptomatic and living independently, had close relationships, were employed or otherwise productive citizens, were able to care for themselves and led full lives in general.” This was a startling good outcome for patients who had been seen as hopeless in the 1950s, and those who had recovered, Harding told the APA Monitor, had one thing in common: They all “had long since stopped taking medications.” She concluded that it was a “myth” that schizophrenia patients “must be on medications all their lives,” and that, in fact, “it may be a small percentage who need medication indefinitely.”

Now here is what Dr. Torrey writes. “As Whitaker describes it . . . ‘34 percent were recovered’ which he claims is a ‘startling good outcome.’ Whitaker attributes this outcome (emphasis added) to the fact that ‘they had all long since stopped taking their medications.’ ”

We can call this dishonesty moment number three in his review. I did not attribute the 34% recovery rate to the fact that they had “all long since stopped taking their medications,” as that would indicate that I had drawn that conclusion. Instead, I repeated what Dr. Harding had said in an interview with the APA Monitor about the recovered patients. Equally revealing is what he omits from his discussion of Dr. Harding’s study: he does not mention her conclusion that the conventional wisdom regarding the need for schizophrenia patients to stay on antipsychotics all their life is a “myth.”

Martin Harrow’s Longitudinal Study

As Dr. Torrey correctly notes (for once), I do consider Martin Harrow’s report on the long-term outcomes of people diagnosed with schizophrenia and milder psychotic disorders to be of great importance. His was a prospective study of 200 psychotic patients, whom he followed for 20 years, and it is the only such study in the scientific literature.

Dr. Torrey dismisses the study as “completely unremarkable,” and so let’s take a close look at it to see if that is a fair assessment of his findings.

In the study, everyone was treated conventionally in the hospital with antipsychotics and then discharged.  Harrow then periodically assessed how they were doing over the next 20 years. At each followup, he looked at whether they were symptomatic, whether they were working, and a variety of other outcome measures. He also charted their use of antipsychotics and other psychiatric medications. At the end of 15 years, he still had 145 patients in his study (64 with schizophrenia and 81 with milder disorders. In one of his article, he also reported outcomes for a schizophrenia-spectrum group, which included the schizophrenia patients and a few others with schizoaffective disorder.)

Here is a summary of Harrow’s findings, taken from both his 2007 report on their 15-year outcomes, and  his 2012 report on their 20-year outcomes. (See slides for a graphic presentation of this data.)

1. Recovery rates in the schizophrenia group

At the end of two years, the schizophrenia patients who had stopped taking antipsychotics were doing slightly better on a “global assessment scale” than those taking an antipsychotic. Then, over the next 30 months, the collective fates of the two groups began to dramatically diverge. The off-med group began to improve significantly, and by the end of 4.5 years, 39% were in recovery. In contrast, outcomes for the medicated group worsened during this 30-month period. As a group, their global functioning declined slightly, and at the 4.5-year mark, only six percent were in recovery, and few were working.

That stark divergence in outcomes remained for the next ten years. At the 15-year followup, 40 percent of the schizophrenia patients off antipsychotics (25 of the 64 patients) were in recovery, compared to five percent of those taking antipsychotics. (To be in recovery, a person had to have no positive or negative symptoms; couldn’t have been hospitalized in the previous year; and adequate work and social functioning.)

2. Spectrum of outcomes in the schizophrenia group

Harrow divided long-term outcomes for the 64 schizophrenia patients into three categories: recovered, fair, and uniformly poor. Of the 25 patients who stopped taking antipsychotics, 10 recovered (40%), 11 had fair outcomes (44%), and 4 (16%) had uniformly poor outcomes. In contrast, only 2 of the 39 patients who stayed on antipsychotics recovered (5%); 18 had fair outcomes (46%), and 19 (49%) had uniformly pair outcomes. In sum, medicated patients had one-eighth the recovery rate of unmedicated patients, and a threefold higher rate of faring miserably over the long term.

3. Global outcomes for schizophrenia patients by prognostic type.

At the start of the study, Harrow grouped his schizophrenia patients into two subgroups: those with a good prognosis and those with a bad prognosis. Although he didn’t provide the global data for these two subtypes, he did report this finding: “In addition, global outcome for the group of patients with schizophrenia who were on antipsychotics were compared with the off-medication schizophrenia patients with similar prognostic status. Starting with the 4.5-year followup and extending to the 15-year follow-up, the off-medication subgroup tended to show better global outcomes at each follow-up.”

In other words, in every subgroup of patients (by prognostic type), those off medication had better long-term outcomes (in the aggregate).

4. Psychotic symptoms in the schizophrenia-spectrum and schizophrenia-only group

At the two-year follow-up, about 35% of the “schizophrenia spectrum” group were off antipsychotics, and that percentage remained fairly stable throughout the next 15 years. There was no significant differences in severity of psychotic symptoms between the on-med and off-med groups at two years, but starting with the 4.5-year followup and continuing through year 20, those “who were not on antipsychotic medications were significantly less psychotic than those on antipsychotics.

Among the schizophrenia patients, at the 10-year follow-up, 23% off antipsychotics were experiencing psychotic symptoms, versus 79% of those still on the drugs. At the 15-year followup, 28% of those off antipsychotics had psychotic symptoms, versus 64% of those on the medications.

5. Anxiety symptoms in the schizophrenia-spectrum group

At the two-year followup, about 50% of those on antipsychotics and a similar percentage of those off medications were experiencing “high anxiety.” However, over the next 30 months, high anxiety symptoms soared in the on-antipsychotics group, such that nearly 75% were experiencing this distress by year 4.5, whereas anxiety markedly declined for those off antipsychotics, such that only about 20% were experiencing this distress by year 4.5.  This dramatic difference in anxiety symptoms remained throughout the study, with more than half of those on antipsychotics still suffering from high anxiety at the end of 20 years.

6. Cognitive function in the schizophrenia-spectrum group

The researchers assessed cognitive function at each followup, with one test assessing ability to access general information, and the other abstract thinking. At three of the six follow-ups, those off antipsychotics showed significantly better cognitive functioning, and in the other three follow-ups, there was a general trend favoring those off antipsychotics.

7. Sustained periods of recovery in the schizophrenia-spectrum group.

Of the 24 schizophrenia patients who remained continuously on antipsychotics throughout the 20 years, only 4 (17%) “ever entered into a period meeting the operational definition of recovery during any of the six follow-ups.” The reasons they failed to do so was either because they were psychotic or not working, Harrow noted. In contrast, there were 15 in the group of 70 who were off antipsychotics by the two-year follow-up and remained off the drugs throughout the remaining 18 years. Thirteen of these 15 patients (87%) “experienced two or more periods of recovery,” which meant they were both asymptomatic and working more than 50% of the time.

8. Global outcomes of all 145 patients

Harrow provided global adjustment data for all four groups in his study: schizophrenia on meds, schizophrenia off psychiatric medications, milder disorders on psychiatric meds, milder disorders off. At the end of 15 years, the global outcomes for the four groups lined up like this, from best to worst: Milder disorders off meds, schizophrenia off meds, milder disorders on meds, and schizophrenia on meds.

As could be expected, Dr. Torrey does not report of any of these outcomes in detail. I’ll let readers of this blog decide whether such findings are—as Dr. Torrey writes— “completely unremarkable.”

In his discussion of the Harrow study, Dr. Torrey also makes this claim:  “Whitaker . . . using tortured logic, asserts that the Harrow study proves that long-term antipsychotic use causes brain damage and is responsible for many of the symptoms of schizophrenia, when in fact the study does nothing of the kind.”

Here is my challenge to Dr. Torrey. I wrote about the Harrow study on pages 115 to 118 of Anatomy of An Epidemic.  He should point to the passage on those pages where I asserted that the Harrow study “proves that long-term antipsychotic use causes brain damage and is responsible for many of the symptoms of schizophrenia.” If he can not point to such an assertion, then he should print this correction on his Treatment for Advocacy web page: “I lied about what Robert Whitaker wrote about the Harrow study.” He could then explain to his readers why he felt motivated to lie in this way.

But for our purposes, we can chalk this up as dishonesty moment number four in his review.

The Open Dialogue Program in Finland

In the solutions section of Anatomy of an Epidemic, I wrote about the good outcomes for psychotic patients in Western Lapland, a region in Finland, that—since 1992—has used antipsychotic drugs in a selective manner. Two-thirds of their first-episode patients have not been exposed to antipsychotics five years after initial diagnosis, and 80% are either working or back in school. These are extraordinarily good results, but Dr. Torrey dismisses them out of hand: “Most revealing and remarkable, however, is the fact that more than 40 years after the treatment program began, there are almost no publications describing its results and nobody in Finland or elsewhere has tried to replicate it. Robert Whitaker appears to be the person most impressed by it.

If Dr. Torrey had checked the notes section of my book, he would have found a number of citations documenting the good outcomes in Western Lapland since 1992, when that district began using antipsychotics in a selective manner. Here are five such published reports, and if Dr. Torrey likes, I can point him to others:

1. V. Lehtinen, “Two-year outcome in first-episode psychosis treated according to an integrated model,” European Psychiatry 15 (2000):312-20.

2. J. Seikkula. “Five year experience of first-episode non-affective psychosis in open-dialogue approach,” Psychotherapy Research 16 (2006): 214-28.

3. J. Seikkula. “A two-year follow-up on open dialogue treatment in first episode psychosis,” Society of Clinical Psychology 10 (2000):20-29.

4. J. Seikkula. “Open dialogue, good and poor outcome,” J of Constructivist Psychology 14 (2002):267-86.

5. J. Seikkula. “Open dialogue approach: treatment principles and preliminary results of a two-year follow-up on first episode schizophrenia.” Ethical Human Sciences Services 5 (2003):163-82.

There are also now groups in the United States and elsewhere seeking to "replicate" the open-dialogue model, and if Dr. Torrey likes, I could point him to a conference that will be held in Finland in late August devoted to this topic. Many others, who have read the published articles, apparently are "impressed" by the success of Open Dialogue Therapy.

Part Three: What SSI and SSDI Rates Say

In this part of his review, Dr. Torrey states that while the number of individuals on disability for SSI and SSDI has “indeed increased alarmingly,” he argues that this is because these programs “have become alternatives to welfare for poor and unemployed individuals who have any kind of psychiatric problem.”

I agree this is partly true. But, as I detail in Anatomy of an Epidemic, our drug-based paradigm of care is fueling this epidemic too. One, the widespread use of stimulants and antidepressants has helped create a “bipolar boom” and  the disability numbers are soaring, in large part, because of an extraordinary influx of bipolar patients. Two, a review of the long-term outcomes data for antipsychotics, anti-anxiety agents, and antidepressants reveals that these drugs, in the aggregate, increase the risk of long-term disability.

Part Four: The Dopamine Receptor Story

This section of Dr. Torrey’s review has its interesting moments. He writes that if antipsychotics do indeed cause an increase in dopamine receptors (as I report in Anatomy of an Epidemic,) then “Whitaker is correct that this could potentially be a serious problem, but at this point in time the reality of the problem in humans is unknown.” Although antipsychotics have been shown to cause an increase in dopamine receptors in rats, he writes, it “still is not clear whether or not this also occurs in humans.”

But as Dr. Torrey well knows, there is in fact good evidence that it does indeed occur in humans.

As Philip Seeman first reported in Nature in 1978, the brains of schizophrenia patients at autopsy have 50 percent more dopamine receptors than controls. But at that time, Seeman and his collaborators were uncertain whether this increase in dopamine receptors was due to the disease, or caused by the antipsychotics. During the next decade, investigators in the United States, England and Germany investigated this question, and all determined that neuroleptics led to an increase in brain dopamine receptors.

“From our data,” German investigators wrote in 1989, “we conclude that changes in [receptor density] values in schizophrenics are entirely iatrogenic [drug caused.]”

Finally, in 2002, Seeman reported that, in a study that utilized positron emission tomography, he had documented this increase in dopamine receptors in living patients. This study, he reported, “demonstrates for the first time, using in vivo neuroreceptor imaging, that dopamine D2 receptor binding is increased after long-term treatment with antipsychotics in humans.”

Here is why this is so important. This increase in D2 receptors is thought to make patients more biologically vulnerable to psychosis. The increase may lead to severe relapses when patients abruptly withdraw from antipsychotics, and the worry is that it also leads to tardive psychosis—a deepening of psychotic symptoms—over the long term (when patients stay on the drugs.) In his 2002 paper, Seeman also found that those patients that had the “highest degree of D2 receptor regulation” subsequently developed “severe and persistent tardive dyskinesia.”

So, in this instance, give Dr. Torrey credit for acknowledging that a drug-induced increase in dopamine receptors could be a troubling thing indeed. But when he writes that it is “not clear whether or not this occurs in humans,” we have a new moment of dishonesty in his review to tally up.

Miscellany:

I could point to many other instances from Dr. Torrey’s review in which he hasn’t accurately represented what I wrote in the book, or has misrepresented the research literature. But detailing all such problems would take several thousand words more, and so I will let those pass.

However, there is one final bit of miscellany in his review that I want to address, and it has to do with Loren Mosher’s ouster from the NIMH.

Dr. Torrey states that Loren Mosher was not ousted from his position at NIMH as head of the Center for Schizophrenia Studies because he had led the Soteria experiment, but because the field “was moving strongly in a biological direction” and thus Mosher held views of schizophrenia that were at odds with this new wave in psychiatry. Dr. Torrey then writes this of my reporting on Dr. Mosher’s ouster from the NIMH:

“What is perhaps most surprising in Whitaker’s book, given his past career as a respected journalist, is his willingness to uncritically accept anything he has been told as long as it fits his thesis and his wish to blame antipsychotics for everything except global warming.”

The story of Dr. Mosher’s fall from grace at the NIMH is, in fact, easily documented, and it indeed is associated with the Soteria project. As internal written records reveal, the psychiatric establishment began attacking Dr. Mosher the minute he reported good outcomes for his Soteria patients. The study had “serious flaws,” the NIMH review committee snapped. “The credibility of the pilot study is very low,” it wrote. Evidence of superior outcomes for the Soteria patients as “not compelling.” And so on, and then, after the initial reports appeared  the committee hit Mosher with the lowest blow of all: It would approve further funding for the Soteria project only if he was replaced by another  investigator, who would then work with the committee to redesign the experiment.

“The message was clear,” Mosher said, when I interviewed him years later about the Soteria project. “If we were getting outcomes this good, then I must not be an honest scientist.”

When I reported this story in Mad in America, I obtained the written documents that detailed this response to Loren Mosher’s Soteria experiment. Those documents laid bare the hostility of the biological faction within psychiatry toward his study, and toward Mosher personally because of it. So rather than accept this story “uncritically,” as Dr. Torrey suggests, I dotted my I’s and crossed by T’s. In fact, this was the same reporting path–a reliance on documents–that led me to write Mad in America and Anatomy of an Epidemic. If had been willing to “uncritically accept anything [I] had been told,” then I would have written about the wonders of the “psychopharmacological revolution.” 

Dr. Torrey’s Review as a Foil for Assessing the Merits of  Outpatient Commitment Laws 

The fact that Dr. Torrey has written a scathing review of Anatomy of an Epidemic, asserting that I “made so many errors it is difficult to know where to begin,” is—in its guise as a book review–of little import. I had exchanged a couple of emails with him before his review appeared, and I knew this was coming. You cannot write a book like Anatomy of an Epidemic, which so directly challenges conventional beliefs, and not expect to be attacked, and it should not be surprising when the attacker misrepresents what you wrote, or twists things in order to try to publicly discredit you. Indeed, in the two years since my book was published, I have gotten quite used to reviews of this type, with defenders of the faith eager to inform readers that all is well in the world of psychiatric medications.

But here is why the review could be considered important to us as a society. We are embracing the increased use of outpatient commitment laws that force people to take antipsychotic medications, and we do so under the belief that these drugs are a necessary good for those people. This is an extraordinary thing for a society to do, to force people to take medications that alter their minds and experience of the world.

Yet, here is the story told in Anatomy of an Epidemic: If we look closely at Harrow’s study and a long list of other research, there is good reason to believe that these medications increase psychotic symptoms over the long-term, increase feelings of anxiety, impair cognitive function, cause tardive dyskinesia with some frequency, and dramatically reduce the likelihood that people will fully recover and be able to work. If this is so, how can we, as a society, defend our increasing embrace of forced treatment laws?

We can now ask this key question about Dr. Torrey’s review of Anatomy of an Epidemic. Given that he is a foremost proponent of outpatient commitment laws, what are we—as a society—to make of the fact that, in order to attack the book, he had to do so in a dishonest way?

By the end of the evening, we all left feeling hopeful and energized. I realized how much I wished I had access to a group like this 20 years ago, when I first realized my daughter was in distress.

In our Family Den, everyone acknowledged that the support of other families who had shared similar experiences was critical for their family’s recovery. We all confessed this kind of support has been hard to find. We have all experienced feelings of isolation. We have all been confused about our role in recovery.

At CooperRiis, the healing community I cofounded with my husband, we talk to families every day who are surprised to learn recovery from severe emotional distress is an option, much less an expected outcome.

When families don’t even know recovery is possible, we’ve got a BIG problem.

In our fragmented mental health care system, most of us learn about recovery by trial and error. Some never learn about it at all. If we’re lucky, families learn about and create recovery together by sharing our stories, our strategies and the life lessons we’ve learned.

This is why we founded Mother Bear Community Action Network—to provide a place where hope is real, families are supported and recovery for every family member is expected.

I look forward to sharing more about our international family-led network and our family recovery stories here on this blog.

Tomorrow, I’ll share a story about a family that was shanghaied in recovery until they learned that letting go with love can be an opportunity for every family member to grab on to a life worth living.

Until then, I’ll close with the affirmation we shared in our Family Den.

We come together to support and remind each other that recovery is expected. Family support is an integral part of recovery. We acknowledge that while we cannot recover for someone else, we can recover ourselves and, in turn, nurture the flame of hope in others.

You can join the discussion and our growing community families on our new website www.MotherBearCAN.org (where you will find more stories of hope and healing).

As one discussion forum participant recently said, “HOPE is a game changer.”

Yes, it is.

When are psychological diagnoses used?

1. For reimbursement for third-party payers.
2. Mental health professionals communicating with colleagues.
3. Mental health professionals communicating with clients

In the first use, insurance companies and government agencies use diagnoses because they want to ensure that people only receive a treatment if they need it and that they are being given the most appropriate treatment for their problems.

In the second use, mental health professionals are trying to convey the most pertinent information about their clients and give their colleagues the highest quality understanding of a client’s situation.

In the third use, mental health professionals are trying to help clients understand what they are experiencing and why.

The natural question that arises here is whether the medical model of diagnosis is the best way to accomplish those aims. In order to address this question we will explore:

1. Are “mental illnesses” real?
2. Is thinking in terms of “mental illness” and diagnosis helpful to clients?

Defining the Medical Model

There are many ways to define the medical model of diagnosis. I will offer two. First, Gerald Klerman was highly involved in the creation of the DSM-III and was the highest ranking psychiatrist in the US government at the time. Just before the DSM-III was approved by the APA, Klerman published the following:

1. Psychiatry is a branch of medicine.
2. Psychiatry should utilize modern scientific methodologies and base its practice on scientific knowledge.
3. Psychiatry treats people who are sick and who require treatment.
4. There is a boundary between the normal and the sick.
5. There are discrete mental illnesses.  They are not myths, and there are many of them.
6. The focus of psychiatric physicians should be on the biological aspects of illness.
7. There should be an explicit and intentional concern with diagnosis and classification.
8. Diagnostic criteria should be codified, and a legitimate and valued area of research should be to validate them.
9. Statistical techniques should be used to improve reliability and validity.
   (Klerman, 1978) 

I would distill this perspective down to two main tenants:

In order to properly understand where this way of thinking came from, we can look to the two men that have been most influential in creating and advocating this model.

Emil Kraepelin can be thought of as an optimist. He was a German psychiatrist, a contemporary of Freud, who first proposed the idea of “psychological diseases.” In order to understand where this idea came from, we need to look at what was happening in medicine at the time. Kraepelin first published his theory just after Louis Pasteur proposed the Germ Theory of Disease. During Kraepelin’s career, he saw the shift in medicine from thinking in terms of imbalances and humours to thinking in terms of germs and diseases. He saw this shift in thinking lead to enormous advances in helping people.

As you can see, Kraepelin saw the field of medicine discover the causes of major diseases and develop cures and vaccines. He hoped that the disease model, if applied to psychiatry, could could lead to similar advances. So he set out to try to discover psychiatric diseases.  Since every real disease shares common symptoms, etiology (cause), and response to treatment, he believed that if he could correctly group symptoms, they would also share an etiology and response to treatment.

A Real Psychiatric Disease

In order to clarify what Kraepelin meant by mental disease, it can be helpful to look at a condition that actually meets those criteria. Wilson’s Disease is caused by mutations in the Wilson’s Disease Protein Gene (ATP7B) which causes copper accumulation. It has a single cause. Wilson’s Disease causes depression, anxiety and psychosis in addition to tremors and jaundice due to liver and nervous system damage. It has a recognizable cluster of symptoms. Removing copper from the system (through chelation) prevents further damage. Everyone with Wilson’s Disease responds in a predictable way to treatment.

Schizophrenia, Bipolar and Major Depressive Disorder are examples of so-called diseases that do not even come close to meeting Kraepelin’s criteria. After 100 years of grouping and regrouping symptoms, psychiatry has found extremely few diseases with symptoms, etiology and response to treatment that properly cohere. Certainly this way of thinking has not led to the kind of advances Kraepelin had hoped for. If Kraepelin were alive, I believe he would advise us to look for another paradigm.

Robert Spitzer was a Real Weirdo

Robert Spitzer was the creator of the DSM-III and chiefly responsible for taking Kraepelin’s ideas from relative obscurity to being the dominant paradigm in the mental health field. The adoption of DSM-III in 1980 was the most decisive move in the history of mental health away from thinking in terms of personal experience and the uniqueness of the individual in his social context, and toward the medical model.

Spitzer’s influence on the field was enormous. DSM-I and DSM-II both represented the view of psychological problems as being expressions of inner-conflict and difficult life experiences that were only able to be properly understood by understanding the individual or family. Spitzer’s DSM-III was the decisive break to a view of psychological problems as being best understood as specific disorders. There is no longer a need to understand the context.

Why was the mental health field willing to listen to Spitzer? In the 1970′s there was a crisis in psychiatry and the field was looking for a new paradigm. There was a broad antipsychiatry sentiment in academia and popular culture from Thomas Szasz and Michel Foucault to One Flew Over the Cuckoo’s Nest. Third-party payers were demanding that psychiatry demonstrate the efficacy of their practices as they wanted to be paid to treat people with increasingly mild distress. There was pressure from the emerging field of psycho-pharmaceuticals to be able to market their drugs for specific diseases and newly deinstitutionalized patients. Conflicts between various theoretical camps, and those who viewed psychological theories as too subjective were destabilizing. And psychiatrists were feeling threatened by other professionals delivering psychotherapy (Resnick vs. Blue Shields, 1980 was a court case that prohibited Blue Shields from requiring psychologists be supervised by an MD in order to provide therapy).

Psychiatry was obviously facing huge problems and it makes sense they were looking for a savior to save them. They chose Robert Spitzer.

In a 2003 interview with NPR, Spitzer described himself as someone who is much more interested in fitting puzzle pieces into a system than he is in understanding human emotion. In fact, he said that he did not view himself as having a particularly good understanding of people. As a 12 year-old boy, he would graph his attractions toward 5 or 6 girls at his summer camp. After retiring from psychiatry, he proceeded to develop a complicated categorical system for ballroom dancing. However, the ballroom dancing community has been less willing to adopt Spitzer’s categories than has mental health field.

When Spitzer began developing the DSM-III in 1974, diagnosis was an unpopular specialty. He was able to appoint himself to head all 25 committees. The development of the manual was not based on any research. Former Columbia Professor David Shaffer (who worked with Spitzer on the DSM-III) described the process as one in which a group of psychiatrists met in a small room and argued with each other loudly. He said that the loudest person would be the one whose view prevailed. In these discussions, they concluded it would be “ludicrous” to call racism a disorder, but that PMS was. Spitzer was in favor of keeping homosexuality a disorder but backed down after fierce protest. In other words, these categories were based on a small group’s subjective opinions rather than discovering actual diseases with symptoms, etiology and treatment response that properly cohere.

Why Did the Rest of the Field Follow Psychiatry in Adopting the DSM-III?

It is clear that psychiatry was looking for a new paradigm to reestablish their position atop the mental health field. But why did other professions follow? For starters, the most influential mental health professionals in government and private insurance were psychiatrists. This led to private insurance companies and government agencies becoming much stricter about requiring diagnosis after DSM-III. There was also a growing shift from out-of-pocket payment for therapy to an increasing reliance on third-party payers.

So Is Diagnosis Helpful?

While a fair amount of research has been put into trying to prove the DSM’s diagnoses are reliable, there has not been a single study aimed at testing whether using diagnoses increases therapeutic outcome. However, all evidence shows that mental health treatment as a whole has not improved since diagnosis has become ubiquitous. Clearly, Kraepelin’s hopes have not come true.

If Not Disease, Then What?

Returning to the three main reasons mental health professionals use diagnoses: (reimbursement, communicating with colleagues, communicating with patients), we can think of other paradigms that might be more effective at accomplishing these aims.

Other possible paradigms include symptom-oriented descriptions (listing client symptoms and severity without trying to group them into a disorder) and complaint-oriented descriptions (describing the client’s own reasons for seeking treatment). Consider the following:

I believe that we can better accomplish these aims without using the medical model of diagnosis. I do not believe there is any reason to believe that the diagnoses listed in the DSM are “real disorders” in the sense that both Kraepelin and Klerman hoped they would be.

What are your thoughts about the medical model of diagnosis vs symptom-oriented or complaint-oriented approaches?

First, I’ll examine this question with regard to my personal life. Then, I’ll explore this question from the broader perspective of psychiatry as a profession. Finally, I’ll move beyond the topic of psychiatry.

I doubt that the practice of psychiatry is “salvageable” for me. The practice of psychiatry, within the medical systems of today, no longer holds the original appeal it had for me.

When I first opened my private practice in 1989, I enjoyed therapeutic relationships with my patients. I had fun exploring creative approaches to improve each individual’s life. Few medicines were available.  Patients paid me. Third party payment schemes were between the patient and his insurance company.

All of medicine has been transformed by two intertwining corporate maneuvers: the takeover of the practice of medicine by medical service provider corporations and unrestricted drug marketing campaigns. By these two powerful forces, the practice of psychiatry (and all of medicine) has been transformed.

Over the past twenty-five years, my role as a psychiatrist has been changed by the impact of these conjoined twins. I was one half of a doctor-patient relationship then. I’ve been re-formatted into an interchangeable cog inside medical service provider corporations. My function is limited to pushing the stream of pills from manufacturers to consumers.

The heart of the therapeutic relationship was ripped out of modern psychiatry. It was replaced by “preferred provider panels” and pre-authorization clerks on 800 numbers. Drug marketing campaigns caused an explosion of demand for pills.

The practice of psychiatry is now a factory job with nothing but prescriptions to offer strangers.

To say that this is dispiriting work for me would be an understatement.

If I still had my old federal student loan enforcement friends chomping at my heels, I would feel more compelled to hunker back down with my prescription pad. But I’ve spent my entire adult life sawing myself free. Those of you that still carry two-home-mortgages-worth of student debt with you into every life decision know what I mean: debt shackles.

There’s still an ocean of suffering to relieve. Allowed only my prescription pad and a time clock, I’m inadequate to the task. I drown when I try.

That’s me.

Now for a bigger picture.

When I was asked if I thought psychiatry was “salvageable”, the question caught my attention. I had to think more about this question than just my own small self, embedded in medical systems.

I had one of those “a-ha” moments.

Psychiatrists are not the only providers trapped in the dance of prescribing psychiatric drugs. More and more psychiatric prescribing isn’t done by psychiatrists.

Along with the ramped-up demand for pills caused by direct public and direct physician advertising, there has been a decades-long marketing campaign to promote the idea of a “psychiatrist shortage”.

I’ve been hearing about this “psychiatrist shortage” as part of the “doctor shortage” story since the early 1980′s when I finished medical school. After residency there was stiff competition for paying patients, hourly contract jobs and salaried employment. Just like today. I saw no evidence of a shortage.

This “psychiatrist shortage” was the rationale given for licensing nurses to be “prescribers” in Oregon. I was told they would work in under-served areas and that they would take the “easy” patients so that overworked psychiatrists would have time to manage the more difficult cases.

A commenter in an earlier blog said that they use physician’s assistants and nurse practitioners where he works for “prescribing” because they cost half as much as psychiatrists. “Prescribing” is what psychiatrists do there. These other “prescribers” are cheaper. Choosing a cheaper “prescriber” cog is a simple financial decision for a corporation.

Most “prescribing” in Portland mental health clinics is done by nurse practitioners and physician’s assistants, not by psychiatrists. Is this different anywhere else?

There has also been a methodical shifting of mental health “prescribing” out of the mental health clinics to primary care doctors and pediatricians. This movement is pushed by shifts in government funding. These patients no longer have access to non-pill mental health treatments.

Both social workers and psychologists have lobbied for “prescribing privileges” in Oregon. Both lost round one. Social workers and psychologists might charge less than nurses to write prescriptions. If it’s “cheaper” to have non-medical “prescribers”, money will do the talking.

Psychologists in two states and in the active duty military can now prescribe psychiatric drugs. It could be an interesting piece of research to discover how much of the funding for these initiatives came from drug companies.

Psychiatrists are completely disposable today.  In their diminished role as “prescribers”, psychiatrists are interchangeable pill pushers. Every psychiatrist could vanish tonight and there would be no change in the workings of the machine. The other “prescriber” cogs with their prescription pads would keep the pill-laden conveyor belt moving from pharmaceutical factories and down the waiting American throats of all ages.

Pharmaceutical profits would continue. Prescriptions would be written and refilled. Plus, there are social workers and psychologists clamoring for “prescribing privileges”, ready to help.

Psychiatry as a profession is finished.

What has happened to psychiatry is one small piece of what is happening throughout the field of medicine. The practice of medicine is one step behind psychiatry on the conveyor belt to the scrap heap.

Most physicians are now employees of medical corporations; either direct hires or members of provider panels. They are being downgraded into “prescribers” as well. They have had the heart of the doctor-patient relationship ripped out. They obey rigid formularies made up by the medical corporation bosses in their “prescribing” decisions and race to the time clock.

“Prescribing” as fast as they can, physicians can’t keep up with the artificially created demand for pills. Medical corporations have their own cost saving “prescriber” extenders to help them with this “physician shortage”: nurse practitioners, physician’s assistants, nurses, midwives and expanding pharmacist scopes of practice. Medical assistants, secretaries and software programs authorize refills working from standardized guidelines.

Last year, lucky for overworked Oregon physicians, naturopaths, with their newly expanded “prescribing privileges,” can join as full-fledged corporate cogs at the pharmaceutical conveyor belt.

Thanks for reading and thinking and writing.

Best always,

Alice

Related Items:
Utah Supreme Court Allows Lawsuit for Psychotropic-Induced Murder (Psychotropics prescribed by a nurse practitioner)

I’ll need to post my speech in several parts because it is way too long for just one. I’ll do this over the next week or so to keep the connections apparent and allow for discussion along the way. No references are provided, also for space concerns. And, of course, a speech usually doesn’t work as well when it is written out, so my apologies in advance for the writing. However, in terms of being open, I wanted to relay as close as possible what I said.

For those who are not familiar with what “managed care” refers to, it is the dominant way that healthcare and mental healthcare has been provided in the USA (the only country to do so) over the last 20 years. If any of you have gone for healthcare during this time, what you were able to receive likely was greatly influenced by a managed care company, which is in turn paid by the government or businesses. This system of review and authorization has had a major impact on psychiatrists emphasizing medications and spending less time with patients, as well as any clinician not being able to provide a lot of psychotherapy or alternative services (if they want to be paid by the insurance coverage). These for-profit managed care companies are very large. For example, United Healthcare covers over 80 million people in the USA.

This insurance mechanism will increase if President Obama’s healthcare reform continues to emerge, and not struck down by the Supreme Court. If we want healthcare and mental healthcare that is provided under private insurance, Medicare, or Medicaid to improve, this part of the system will need to be addressed. I think relating it to human rights is one way to do so.

Speech

Let us start off with a straw poll and vote:
1. Raise your hand if you think that managed care hinders human rights.

2. Raise your hand if you think that managed care benefits human rights.

3. Raise your hand if you think it does both.

4. Raise your hand if you think it does neither.

(If we get enough answers on this blog, we can tally them and compare to what I got at the meeting; my answer will be apparent as we go along).

There is a handout available that copies the 1948 “Universal Declaration of Human Rights”. What I want you to quickly see, if you already have not, is the introduction, for it gives the case of why these rights are important to be known well by us, our patients, and the public. Here are some excerpts from this introduction.

“All human beings are born with equal and inalienable rights and fundamental freedoms. . . In the Universal Declaration of Human Rights, the United Nations has stated in clear and simple terms the rights which belong equally to every person. These rights belong to you. They are your rights. Familiarize yourself with them. Help to promote and defend them for yourself as well as for your fellow human beings.”

(To be continued in Part 2)

The bears kept me company in the cab, made me laugh, watched my driving and public relations for signs it was time to take a break, and helped me interpret the lessons you learn about the Human Sphere by picking up 40 people at random every night and driving them somewhere.

There’s every kind of people in New York, and sooner or later, they all get in your cab. If you don’t have mood swings when you start hacking, the public and the streets will give them to you.

But the most important thing the bears did for me was talk back to the nasty, horrible voices and hallucinations that were telling me to kill myself or somebody else.  If I ever did anything to contribute accidentally or on purpose to my own premature death, I could never go back to the woods and sleep through the winter with the woodsbears.

That was the Bureau’s Prime Directive, and there were no appeals or exceptions.  Contributing to my premature death would prove I’d been contaminated by the Human Condition, and contaminated bears could not be allowed back in the woods. \

So I never took stupid risks, pushed myself when I was too tired, or tried to kill myself.  Whenever the bears warned me, I listened.

I was a bear in the Human Sphere trying to travel back to the woods and sleep through the winter with the woodsbears.

The Bureau had sent me to the Human Sphere as part of an experiment. In the late 1800′s, the Bureau’s research department discovered that people were cutting down more and more of the woods.  If the trend continued, there would soon be no place for bears to live.

So they decided to send one third of the bears to the Human Sphere to live a lifetime, then come back to the woods.  That would leave a lot more room in the woods for bears.  You can recognize bears in the Human Sphere.  They have bear cheeks, noses, toes, bear tummies, and short bear legs.]

Theodore Roosevelt was a bear in the Human Sphere.  He preserved woods, and taught people to love and nurture them.  Government departments he created, that are being copied in states and other countries, are preserving forests to this day – but not nearly as fast as people are destroying them.  He popularized the teddy bear, which changed the public image of bears from something terrifying to something children sleep with and love.

Other bears in the Humansphere wrote children’s books and made movies about bears, became forest and wildlife biologists, and contributed to a new human appreciation of the woods and bears.

But the experiment had a massive, tragic unintended consequence.  The bears who came over ate too much human garbage, got contaminated by the Human Condition, and could not be allowed back to the woods.  A single bear, contaminated by the Human Condition, would contaminate and wipe out all the woodsbears.

Nearing 30 in 1975-77, a normal life for a bear, homeless in New York, my diet contained human garbage.  I was traumatized, experiencing crippling mood swings, suicidal, and desperate to go back to the woods before it was too late.  I petitioned every night at Bureau meetings in the cab.  They told me to hang in a little longer, have faith, and don’t violate the Prime Directive.

When Hollywood made a movie about the deadly combination of isolation and psychosis, they named it Taxi Driver. I heard the same voices in my head Robert de Niro did when he was driving, and when he killed all those people at the end, I knew just how he felt.

But the Bureau of Bears always talked me out of doing anything that would contribute accidentally or on purpose to my own premature death.

Fiction writers talk about a point in their process where they stop telling the characters the story, and the characters start telling them.  That’s how it was with the bears and me. But I couldn’t make them a novel, though I tried many times.  Writing about them always put me back in the cab.

If the genius psychiatrists from Harvard, who labeled me “manic depressive,” had known about the bears, they would have labeled me schizophrenic and delusional, given me as much major tranquilizer as I could stand.  They would have told my family to give up on me because schizophrenia is always chronic, hopeless, and progressive.]

So I didn’t tell them.  In fact, I didn’t tell anyone until 1995, when Patricia Deegan told me the bears were “brilliant. You channeled your illness to keep you alive.  Many cultures would consider that a spiritual gift, not an illness at all,” she said.

I was channeling my creativity, not my illness.  I doubt Pat would call post-traumatic feelings and behavior an illness today.

In 1997, I was listening to “I Shall Be Released” on the stereo.  I looked up and saw two big bear asses with little tails rocking back and forth out the front door.  I was perfectly OK with that.  Ever since, the bears have been a happy memory, not a lovable presence in my life.

About a year ago I participated on a television panel which discussed the antipsychotic drugs and the massive settlements pharmaceutical companies paid out. A psychiatrist on the panel compared the need for these drugs for psychoses as comparable to a diabetic needing insulin. He also stated that psychotic disorders are lifelong ‘brain diseases.’ My time on the panel was limited to be able to address his statements effectively. If there is an ‘imbalance”, what does a correct balance look like? Where is the evidence?  If these are lifelong disorders, how does the establishment explain stories of true recovery?

In my work with persons undergoing extreme states of mind, none of them had any psychiatric hospitalizations during the time we journeyed together in therapy. All of them were also able to reduce or even eliminate psychiatric medications they had been previously prescribed and told they would need to take indefinitely. One woman prior to coming for a consult, had been hospitalized almost every two months and was on 4 different psychiatric medications. She now takes no medication, and has not been psychiatrically hospitalized sense. What happened? Was this just a spontaneous and miraculous shifting of her brain? I think not. It was about the connection, the relationship, that led to  true recovery. The bio-psychiatric paradigm states that if we have suppressed your ‘symptoms’ and you go about your day foggy with a mediocre job, if even that, you are ‘recovered’. But this is not true recovery. True recovery involves understanding the experience of the person, helping them to emerge from their crisis. It means that we help guide a breakdown into a breakthrough.

Here is some text from the back cover: “Many of the great prophets of the past experienced madness–a breakdown followed by a breakthrough, spiritual death followed by rebirth. With the advent of modern psychiatry, the budding prophets of today are captured and transformed into chronic mental patients before they can flower into the visionaries and mystics they were intended to become. As we approach the tipping point between extinction and global spiritual awakening, there is a deep need for these prophets to be free to embrace their spiritual gifts. To make this happen, we must learn to respect the sanctity of madness. We need to cultivate Mad Pride.”

It sounds awesome, right? I think it is, and I think it’s brilliant and visionary, even if I don’t actually agree with all his conclusions. Below is my response after Seth let me read our interviews. In the book his incorporates this text and responds to it:

Mad Pride and the Icarus Project Revisited – Some Final Thoughts by Sascha DuBrul
Reading over the transcripts of our conversation I’m struck by a couple things. First of all, it’s amazing to catch a glimpse of my own thought process as my anarchist sensibilities struggled to make sense of life in the ashram. It’s been a really interesting two years of synthesis as my internal pendulum has swung closer to the middle and I’ve gotten creative about integrating spiritual practice and politics into my life. I’ve found a lot of inspiration and lessons in the history of the Human Potential Movement of the 1960s and 70s—the incredibly fruitful intersection of Eastern spiritual practices and Western psychology that merged with the political counterculture of the times. So many of the insights and tools from this period—from gestalt therapy to encounter–were lost and discredited amidst the neoliberal biopsychiatric backlash of the 1980s. More and more I find myself drawn to engaged Buddhist philosophy and the Generative Somatics community we have here in the Bay Area that mixes social justice analysis and grounded group practices. I see a lot of potential in the slow and deliberate foundation that is being laid by our work.
But Seth, the most important missing piece for me in this conversation of ours about Mad Pride has to do with the role that trauma plays for so many of us who struggle with madness. After just about a decade of working on the Icarus Project and crossing paths with, at this point, thousands of people who identify as “mad”, one thing we all seem to have in common is that we have a lot of trauma and hardship woven through the stories we carry around about our lives.
On a very personal level, it’s clear to me that my “manic” and “depressive” episodes clearly have their roots in trauma from my past – they are reactions to early experiences. My inability to grieve my father’s death as a child left me with so much confusion, anger, and despair that as I got older I channeled that intensity into what gets called mania. It’s blocked energy and over the years I’ve learned how to work with it more effectively.
It’s not a universal experience and that’s an important piece of the story. There’s a whole tribe of us that are wired in a way to have these particular kinds of breakdown/breakthroughs. But if you really believe that there is “a distinctive mad sensibility different from the normal person”, I think we need to talk about how that narrative can leave room for the roles played by societal and familial trauma. And I think we need to distinguish between the “madness” of ecstatic vision and the “madness” of psychic anguish.
Us madfolks, we can throw crazy and wingnut and mad around as terms of endearment or insults as we please and I find it refreshing to hang out with the people who speak my language re-appropriated from oppression. It’s a relief when we’re surrounded by a society that’s steeped in the stifling bio-psych DSM lingo of disorders and dysfunctions. In that way, I appreciate your efforts to reclaim and redefine madness in this arena of language and politics.
The LGBTQ (Lesbian, Gay, Bisexual, Transgender, Questioning) movement has made great strides in recent decades by raising awareness around queer issues (“Gay Pride!”) opening all kinds of exciting doors of societal change. We have a lot in common in our struggles against what is considered straight and normal. But it’s one thing to be proud of difference in sexuality (homosexuality/queerness) and another to be proud of something that’s been earned through strife and suffering and/or a mix of (please excuse the clumsy mechanistic metaphor again) different wiring (madness.) This is not a cut and dry issue in my mind at all. It may be that everyone who’s diagnosed with schizophrenia is having a spiritual emergence, but I don’t think that’s an obvious conclusion to draw. I think a trauma analysis can often be more useful than a spiritual one.
Leaving alone these tangled and complex questions of spirit and material, I want to bring up another aspect of strategy: what do we want our “Mad Pride” movement look like on the ground and in real life?
Before my last hospitalization (and around the time I wrote those last blog posts you’re quoting about the “mad ones”) I was sleeping really badly. I was having visions and dreams of the end of the world. I was isolating from the people closest to me. I was spending hours every day walking in the woods and having conversations with dead people. I often thought I was a spirit in the material world. Was I “mad” by society’s definitions? Clearly.
But more important for our conversation, was I “well” by my own standards and the standards of my community? Did our culture of “Mad Pride” help me in this case to stay healthy? In retrospect, I think the answer is no.
In the culture of the Icarus Project some years ago we developed a rough prototype of a document we call a Wellness Map (or affectionately a “Mad Map”.) It’s a very practical document to be written in good health and shared with friends and loved ones and it starts with the simple (yet not always easy to answer) question:
How are you when you’re well? What does wellness look like to you?
This question is followed by: What are the signs that you’re not so well?
and eventually: What are the steps that you and your community need to take to get you back to wellness?
In my case, I used my “Mad Pride” to totally ignore all the warning signs that I was going off the deep end. I wasn’t being clear with myself or the people in my life about my wellness. I strongly believe that if we want to build an effective movement we have to prioritize our individual and collective health and wellness. And it needs to be way more nuanced and complex than the DSM We need to weave this healthiness into our emerging culture. The psychiatric survivors movement doesn’t have such a great track record in this regard. Hopefully we can do better in the future.
I write these words as the Occupy movement has taken the country by storm and set up encampments in public squares all over the United States. Mental health is one of the major issues the new movement is grappling with as people attempt to participate in group process sleeping outside and surrounded by police. It occurs to me that in this instance more health and wellness and less madness might be what is needed. Working in groups takes skill and my experience of creating “mad” community is that it is hard to make decisions if there isn’t a way for people to ground.
I’m not saying that “Mad Pride” can’t be a really useful rallying cry for the tons of people who’ve been affected by the psych system and want a new empowering narrative and a way to connect with other like-minded folks. I’m saying that that I’ve personally rubbed up against it’s limitations in our movement work and I think that we need to be very clear about our intentions in using this powerful language as a way to bring people together.
So I hope this book ends up opening up some useful space for discussion in our greater community and that all the writings and thoughts you’ve put together help evolve the conversation in creative directions.
Let our Mad Pride movement be grounded in humility and kindness for each other in our diversity of life experiences, a recognition that social movements need good communicators and organizers more than charismatic leaders and messianic visions, and that the beautiful language we use to describe ourselves is only as powerful as the grounded actions we take to back up our words.
Mad love, Sascha

As I mentioned in a previous blog, Mental Health & Recovery Boards have the ability to influence the types of care that are available in a localized area for persons diagnosed with mental/substance disorders (a series of blogs on how we’re approaching DSM, Diagnosing, labeling is forthcoming).  This ability comes from the Board’s statutory authority to direct federal, state and local funding based on local community needs.  While federal funding sources are largely being removed from Boards, state and local funding remain.

Boards are comprised of 18 local citizen volunteers (including persons in recovery from “mental Illness” and family members of persons diagnosed with “mental Illness”).  The Board hires an Executive Director to run the operation and empowers the Executive Director to hire additional staff as needed to accomplish the mission of the organization.

For Ashland County then, the solid foundation began with convincing Board members of the need for serious reform in the way we (1) conceptualize “mental illnesses” and (2) operationalize “treatment” If you are considering doing something similar let me encourage you to be patient and thorough with these beginning steps.  Our Executive Director says repeatedly that without the support of Board Members we would not be able to pursue the reforms we are engaged with.  Once a decision is made to proceed down this path of reform, criticism, skepticism, disdain, hostility, etc. will likely be directed at the organization.  Therefore, I encourage you to get this foundational step right so you can weather the opposition to come.

There are different approaches available to help convince groups of the need for reform.  The approach we’ve taken is to provide educational materials (SAMHSA Recovery Consensus Statement, Medication Optimization, Choice, and Alternatives: A Statement from Peers in the Consumer/Survivor Recovery Movement) and bring in well-known advocates and international speakers that espouse the change we’re pursuing.  The educational materials must not be overly “technical” as most volunteers do not have the time (or stomach) to digest this type of information.  It is the responsibly of the Executive Director and his/her staff to faithfully translate this type of information into “plain English”.  Exposing Board members to consumer-survivors and their stories was also critical to put faces to the current challenges, hope for a better future, and a sense of urgency.

Get this step wrong and two years down the road of “reform efforts”, you will find the whole thing collapsing, your job on the line and vulnerable people still at risk.  Take the time to establish a solid foundation!

Next Time:  “Nothing About Us Without Us” How meeting Pat Risser changed my life!

This question, when asked only of psychiatrists, comes with less-than-flattering assumptions.  The thought that “not knowing” is a psychiatrist affliction implies that psychiatrists either have a brain that is different from other people or that they have dark hidden motives driving their lack of awareness.

Making these assumptions about psychiatrists could block collaborative relationships, especially for any person with a history of paddling in the “mainstream” of mental health care.

Broadening this question to encompass all people, rather than just psychiatrists, can give us a better understanding of how we all got into the situation of using drugs with more risks and less benefits than we were initially taught.

Since I believe that all kinds of people working together will be required for the necessary transformation of mental health care, I’m willing to take the risk and explore one possible answer to this question:

“How can any person not have known?”

This question, originally asked of me as a psychiatrist, mirrors questions that arise in my mind when I watch people engage in behaviors with well-known risks.

Here are three examples:

Cars are the number one cause of death among Americans up till the age of 34. Forty-thousand Americans die every year through the use of cars. We still drive a lot.

Despite the known risks of eating fast food, over twenty percent of Americans eat fast food on a daily basis.

Tobacco has mandated health warning labels on every package but people still use it.

It’s as if the information about risks doesn’t make it to the decision-making center of our brains.

So this question is not only about psychiatrists. This question relates to one of the basic thought processing functions we all share.

I have a metaphor that helps me understand how this could happen to anyone, how anyone could “not know”. My “head in a bucket” metaphor for information sorting reflects the sense I get when I think about this question.

It seems to me, some days more than others, as if everyone wears a bucket over his head. This is a substantial bucket with a variety of sizes and shapes of holes drilled through it. Some sizes and shapes of information get through. Others don’t make it past the bucket to the eyes and ears and into the brain. Some chunks of information must be the wrong shape or size to get through.

This head-bucket, with all its variety of holes, is part of the cognitive operating system we’ve all inherited.

From an information gathering and sorting perspective, one job our brain has to accomplish is filtering out unnecessary information. You would be swamped in data if every sound and flicker of light were allowed into your head every moment.

This filtering process includes assignment of relative value to information. This way your filter will be able to let in important information and keep out the dross. Emotional content is one key to assigning value to categories of information. Emotions help decide how inclusive or exclusive a hole needs to be on your filter bucket. For example, it’s important for a person with a bee sting allergy to avoid bees. Bees can kill, so bees are scary. This person will notice anything bee-like in the environment.

Our drilled head-bucket filters out information for us like a champ. It blocks anything out that doesn’t match our beliefs and lets in what does. Yours does it. Mine does it. Everyone’s head-bucket does it.

Einstein noticed this. He said “It’s the theory that decides what we can observe.” I would say that it’s the holes in the invisible bucket I wear over my head that decides what I can observe.

But how do these holes get drilled in our buckets?

This answer has been known by educators, leaders, and marketing wizards for a long time. Cognitive therapists know the answer, too.

The word “belief” can be used for each of the holes that are drilled through our perception-filter head-buckets. Repetition causes belief. Emotions power the drill.

We have holes drilled by parents, teachers and advertisers. We accumulate other holes in our head-buckets through life experiences. Some, we drill using our own private repetitive thoughts. This last way to get beliefs, by drilling them on our own with repetitive thoughts, can be a curse or a blessing, depending on how we drill them.

Control over the creation of our beliefs is wielded by anyone with a way to get repeated messages to us; media owners, teachers or our own selves.

Emotions power the drill. Any emotion will work. The stronger the feeling, the more drill power. An ad that annoys you works fine. So does one that’s burns with sex and longing.The bigger the hole in your bucket, the more similar information is allowed in.

We live immersed in repetitive marketing messages. We smell marketing messages when a deep fryer or bread oven vents into the grocery store. Our world of paid advertising drills our holes and hones our beliefs for us.

Here’s something to keep in mind about this head-bucket reality-filter of ours. Each one of us believes that we are more immune than other folks to the big-bucks marketing; too smart, too self-aware or too quick on the mute button to be effected. I thought so, too.

And we may mistake our filter holes for the truth. I have.

People have products to sell.  The people that own the marketing drills sell access to those drills.

We’ve voted away government money for medical research and teaching hospitals. These are now funded with pharmaceutical dollars. Selling out medical research and education to drug companies would be like letting fast food chains feed our kids in school cafeterias or allowing them to pay for our text books. This would create a public health nightmare.

When you talk to a psychiatrist, remember that the high-end drills have been there ahead of you. There may be no hole through his bucket for your shape and size of message. You’ll have to change the shape, size, direction or velocity of your information. It still might not get through.

Please. Remember that you wear a filter-bucket on your head too. Your belief holes were mostly drilled for you by others. Some of the holes in your bucket could be a little off. Mine were. I’m sure that some of mine still are.

How could I not have known?

The real question is: How could I have known?
Related “In the News” Items:
Schizophrenia Outcome Still Better in Developing Countries
DSM-5 Field Trials Fail to Compare New Diagnostic Criteria with DSM-IV Criteria
Incoming APA President Emphasizes “Positive Psychiatry”
Antipsychotic Drugs and Relapse
Weak Field Trials Scuttle DSM-5 Diagnoses
Benzos Quadruple the Risk of Suicide in Schizophrenia
DSM-5 Retreats from Some Controversial Diagnoses
Ethics Complaints Over DSM Filed With the APA

After already becoming involved in reform efforts personally, I decided to seek to bring together colleagues, psychiatric survivors, and others interested in changing the mental health system. May 9, 2006, I brought this together with the vision of developing a low fee clinic, therapeutic community project, holding educational lectures and workshops, and educating the public through literature and media. After these 6 years, we have accomplished all of these things. In collaboration with my colleagues here in Northeast Pennsylvania, we have offered assistance to those undergoing extreme states where they may also receive acupuncture and massage therapy in conjunction with psychotherapy, and we have made these services affordable and accessible. In 2010, I actually had some clients who resided in the area and we established a brief, but rewarding therapeutic community setting. The Center was also involved in pro bono work for a Prozac involuntary intoxication case and have helped support many in being able to come off of psychiatric drugs and come to true resolution. Last year, the Center became a research center of European-American University. There are now plans to investigate temple healing in India at a temple where those undergoing extreme states reside. These settings appear highly successful for these individuals, and it is necessary to collect stories and information on what exactly is helpful.  As part of the Center’s work, there has also been a focus on autism acceptance and understanding and to encourage relationship based approaches. I found that many of the organizations claiming to speak for autistic persons had no autistic persons involved, so it has been of importance to work alongside autistic persons and make sure that they are validated in their experience and their voices heard.

I am pleased that these past 6 years, though certainly not without struggle from the establishment and also from the so called “establishment critic Gurus”, has been filled with many joyful accomplishments. I am aware that the entire system cannot be changed by a few overnight, but I know that we have made powerful differences in the lives of those we have been privileged enough to journey with.

These are the principles that the Center seeks to carry forward:

Our work is to fight against oppression and coercion in the mental health system, to eradicate the hierarchical barriers between ‘doctor and patient’, to eliminate the medicalization of emotional distress, and to develop means of helping distressed persons where their autonomy, experience, and dignity is respected. We seek to return a conscience to the field of mental health and create an environment where people undergoing distress feel validated, empowered, and capable.

We believe in the power of the human spirit and each person’s potential to be resilient. We believe that the forging of relationship is a key to emotional healing as well as the ability to help a person explore themselves, their world, society, and the human condition. We we seek to join with people in setting life goals, understanding the human condition and experiences without looking upon the person as defective. ICHP encourages involvement in issues related to social justice and believes that our working together to create a world free from poverty, greed, conflict, and discrimination will go a long way towards the development of true mental health.

We seek to be pro-active and preventative in our care for persons. We promote drug free, relationship based approaches for troubled and distressed children and adults and encourage the development and implementation of community based programs. We advocate for juvenile justice reform and for an education system that inspires a zeal for learning and is respectful of children’s innate strengths and abilities. We believe in the development of community based options. We are opposed to force and coercion in the mental health system.

We seek to provide a place of sanctuary for people in crisis or undergoing extreme states of mind, where they can feel supported and validated, and not be subjected to any ‘treatments’ they do not desire. We believe distressed people thrive in environments that are non-threatening and they feel safe.

We collaborate with and offer consultation to parents, educators, and children and their families to develop relationship based approaches and problem solving towards resolving issues of distress, realizing that people are resilient and capable of healing from distress. We have been successful in helping individuals not have to resort to psychiatric drugs or to be able under the direction of their physicians significantly reduce their use.

We believe the key to this healing is by the forging of relationship and the construction of meaning. We believe that compassion is one of the highest ideals. We believe that psychiatric drugs do not teach new ways of living, thinking, loving, and being, whereas people do. We are particularly concerned about the vast prescribing of psychiatric drugs (many which carry warnings of suicidal ideation, violence, agitation, and aggression) upon individuals’ well being. We are concerned about the unethical conflicts of interest existing between medical psychiatrists and the pharmaceutical industry.

We seek to provide to those individuals undergoing serious distress a place where they feel safe, secure, and can begin to begin the process of discovery and overcome fear and emotional chains.

We do not feel that locking individuals away in institutions solve human problems, rather it is through compassion, empathy, and seeking to understand our human condition that true mental health will arise. We believe that placing persons in mental hospitals is equivalent to incarceration however the distressed person has committed no crime, rather they are subject to a psychiatric ceremonial where the pschiatrist seen as ‘sane’, interrogates the person, makes a judgment, and then declares a sentence. We believe that psychiatric diagnosis often stigmatizes and limits opportunity for individuals. We believe that modern society is driving people ‘mad’ and that we must have radical transformation of ourselves and our values as well as return to a greater sense of community. We believe those who call themselves therapists must be actively involved in issues of social justice, helping end oppression and encourage liberation for marginalized persons. We recognize that distressed individuals must be treated as persons with respect and dignity. We believe in recognizing that even the most troubled persons and families have innate strengths. We believe that persons need to be given informed consent and not seen merely by a diagnostic label. We believe that ethics must proceed technology. We believe that bio-psychiatry has often used brutal methods (such as electroshock, insulin coma, toxic drugs, and lobotomy) and has evoked much harm in the lives of individuals and does not provide any true answers to the problems of life. We believe that there is no objectivity and science to the process of psychiatric diagnosis and that those diagnosed are often stigmatized and oppressed in society by virtue of this label.

We encourage drug free relationship based, problem solving, and holistic approaches and encourage individuals who choose to use helpful adjuncts such as meditation, acupuncture, tai-chi, and yoga. The International Center for Humane Psychiatry is one of few entities taking a strong stand on social justice issues and seeking to create a mental health system that does not treat people as objects, but persons.

We believe that it is also necessary for us to assume personal responsiblity and accountability for own own actions and choices and to not resort to the use of or embracing of labels to exonerate ourselves and institutions.

The IOM report was mentioned almost in passing near the end of a Nature article today on the debate over an earlier journal study that found significant noncompliance with a 2007 federal law that requires researchers to post clinical trial results on a publicly available website. The Nature article focused on the fact that the FDA and the NIH disagreed with the findings of several researchers who reported in the British Medical Journal that only 22% of trial sponsors posted their results within one year of completion, as the law requires. The FDA, in response to letters from Congress investigating this lapse, argued, among other things, that the BMJ researchers included some trials that were completed before the 2007 law came into effect, and did not exclude some — such as uncontrolled trials — that are exempt from the reporting requirements. According to Nature magazine, the researchers stand by their results and note that the FDA itself is having trouble determining which trials should be included under the 2007 mandate.

Regardless of who is right in this particular dogfight, the fact remains that the Institute of Medicine, possibly the most respected advisory body in medicine, has determined that the FDA is not doing an adequate job when it comes to drug safety oversight. The report also concluded that substitute or “surrogate endpoints are often relied on in the drug-approval process” (instead of the originally designated primary outcome measures), and that “their use has been related to a number of high-profile drug-safety problems.”  They are obviously referring to such high-profile cases as Paxil (which I chronicled in Side Effects and subsequent blogs), Vioxx, Avandia and so on.

The IOM report makes a number of recommendations, including:

• that the FDA should “adopt a consistent decision-making framework for regulatory actions across the lifecycle of all drugs…”
• that the agency should require, for each new drug and for already
  approved drugs for which there are questions of safety, “a
  publicly available and understandable document that would capture information about a drug before it is approved and throughout its time on the market.”
• that the FDA should develop more tougher and more consistent guidelines about what kind of controlled trials they consider scientifically valid in determining both efficacy and safety.
• that the FDA should work with other federal agencies in evaluating and resolving concerns about the ethics and quality of the increasing number of clinical trials performed outside of the United States.

Last week, the British Parliament came out with a report concluding that Rupert Murdoch is unfit to run News Corp., and its findings made headlines on this side of the Atlantic. How come when the Institute of Medicine comes out with a 233-page report concluding that the FDA is not doing its job, the only mention I can find of it is near the bottom of a short news article in one scientific journal? Why doesn’t this report merit front-page news too?

This blog was originally published at www.alison-bass.com.

Related “In the News” Items:
Schizophrenia Outcome Still Better in Developing Countries
DSM-5 Field Trials Fail to Compare New Diagnostic Criteria with DSM-IV Criteria
Incoming APA President Emphasizes “Positive Psychiatry”
Antipsychotic Drugs and Relapse
Weak Field Trials Scuttle DSM-5 Diagnoses
Benzos Quadruple the Risk of Suicide in Schizophrenia
DSM-5 Retreats from Some Controversial Diagnoses
Ethics Complaints Over DSM Filed With the APA

Somehow several corpsmen at Bethesda Naval Hospital reached me and gained my trust. They might have been helped by a book on body language I was carrying around during that period. Their emotional connections and the trust they built with me enabled me to return to the word of spoken words.

I have for the 40 years since that hospitalization, however, been puzzled over that mute period (and the three other periods of not speaking that I went through in a 6 year interval from 1969 to 1975.) Why did the deepest core of me feel so compelled to go mute?

Then several weeks ago I glimpsed a clue that helped me better understand that dumbfounding experience. I learned that in his last book, Angels Fear, Gregory Bateson and his daughter Catherine had suggested that in addition to our familiar language of words, there is a more basic language, which they called creatura. They said that creatura is the language of all living creatures, of artists, and of madmen.

At least that was the way I heard my teacher Mary Olson explain the Batesons’ concept of creatura. The Batesons contrasted that animated world of creatura with the inanimate world of pleroma. “Pleroma is the world of nonliving matter, described by the laws of physics and chemistry. (Steps to an Ecology of Mind.)” Suddenly many pieces fell in place. I recalled a moment earlier this week with K, a member of my recovery dialogue group. K had not spoken for the first hour of the group. During the hour I had checked on K and saw little expression of emotion on his face. Near the end of the group, I looked over at him and he looked at me. I raised my eyebrows and smiled and he smiled back. I then asked if there was anything he would like to share about the group. “Well doctor, relating is an art form, which I am still trying to master.”

So it seemed that to initiate verbal conversation he and I first needed to initiate a dialogue of gestures. Ah, but what profoundly true words he spoke, when he spoke. Relating is indeed an art form. Another member of the group, a Nigerian woman also had been quiet. She, however, had been showing emotional expression, albeit a sad one. When I asked her if she wanted to share with the group, she said she had been having a difficult time in this country. She said that she didn’t want to offend us but in the three years she had been in this country she found that people rarely have the time to talk or share with each other. She said, Here everyone is always in a hurry and working. In my country, people always stop to talk and ask about you and your family.”

Perhaps this one of the reasons that the recovery rate from even the most severe mental distress, called psychosis, is much higher in Nigeria than in more industrialized countries (as shown in two WHO studies, www.power2u.org).

Then I asked a friend who is Mexican American what the word creatura might mean in Spanish. “Ah, you mean criatura (creeeatura)? Well that word is often used to describe behavior that is child-like, yet it means much more,” and then she recalled a Mexican Folk song, Criatura Hermosa, or Beautiful Creature. The chorus of that song is:
“Beautiful Creature
there is nothing this romantic
wants to see more
than the light in your eyes
shining upon awakening”
We may think of creatura as the language of criaturas hermosas, the language of love, a heart-to-heart dialogue of emotions and gestures.

What if our spoken language of words depends upon a foundation of dialogue between our inner criaturas hermosas? What if the dialogue of chemistry and movements between mother and baby in the months before and after birth establishes the roots from which our verbal language is nourished and flowers? Perhaps that dialogue forms the roots of our very being. What if this wellspring of vitality needs to be replenished by face-to-face contact, touch, hugs, kisses etc. on a regular basis? Then this criatura hermosa language may be lost in our modern world of electronic communication and monologic thought.

Our premium on efficiency, competition, isolation, and individuality may be robbing us of what is the essence of our life’s force, the gestures that underlie and embrace the verbal dimension of our language. Perhaps the language of criaturas hermosas appears in madmen and artists as a rebellion against the life stifling forces of conformity and regimentation. Perhaps we are all striving to be more fully who we authentically are and yet are rarely able to be so.

In my own life, this explanation rings true. I have pictured my periods of madness as having resulted from my extreme suppression of emotions. Since my emotions seem closer to who I truly am, suppressing my emotions is actually a suppression of my vital self. I tried to suppress my emotions and true self growing up, because the rest of my family seemed emotionally out of control.

To guard against these distressing emotions, I went to the furthest extreme of rational thought and emotional control, by becoming a neurochemical researcher. I was convinced that if we could discover the biochemical basis of unhappiness we could then fix it with carefully constructed drugs. I did not allow myself to open up to people because I was afraid that I would be hurt. I found out later that this fear was largely due to the sexual trauma that I endured at the hands of a teacher. This experience left me fearful and “fear builds walls (Pink Floyd, ‘The Wall’).”

At NIMH, I found the right boss to work for. He literally believed that the only reality that existed was the one that could be described by chemical equations. I was only living in the nonliving world of pleroma. I believed that I was just a mixture of chemicals (“We are all just bricks in the wall, (The Wall)) until my unhappiness became so excruciating I had to escape to another reality. That other reality was one of all embracing thoughts and feelings.

Whereas before, in the laboratory we were constantly separating and purifying our chemicals, in that other reality, everything was interconnected. Whereas before I had felt that my actions had little impact on the world, in the other reality every gesture, even those of strangers was rich with meaning. Suddenly when I saw the Pope on TV, he was my best friend. I remember living in that silent limbo and thinking that the only way I could come back to the world, was if I radically changed my life and got a life. I instinctively knew that my survival depended on my turning towards people and away from machinery. I needed to “learn earth talk,” as a client later confided in me.

So I left the lab to work with people as a psychiatrist and an advocate. Through engaging in a dialogue of therapy, love, hugs, friendship, and children I have found ways to nourish my criatura hermosa inside and out. So my criatura hermosa, I believe, is the most basic expression of my humanity. It is my spring that feeds my vital center.

So I did not recover from an illness. I recovered from the extreme mental distress of a constricted life by recovering my humanity. To recover my humanity I had to relearn to interrelate with people and all of life through the language of criaturas hermosas, the language of love, the language of life. It is a language of dialogue, and as Bakhtin said, “To live means to participate in dialogue: to ask questions, to heed, to respond, to agree, and so forth. In this dialogue a person participates wholly and throughout his whole life: with his eyes, lips, hands, soul, spirit, with his whole body and deeds. He invests his entire life in discourse, and this discourse enters into the dialogic fabric of human life, into the world symposium.” (Bakhtin, 1984, p293)

But I ask myself today, “Why is this creatura language, this language of life so important to mental health?” I got a clue this morning. As I was running along Lady Bird Lake, in Austin, Texas, I saw a snake cross my path. I was captivated by the beauty of its rhythmic undulations. I was particularly struck by its unity of movement, the interrelation of all the parts of the snake. It seemed all the parts of the snake acted together as a whole.

It then struck me that my recovery has progressed by my achieving such a rhythmic, integrated whole in my life. I have been striving to unify my mind, body and spirit. I also realize relationships play a crucial role in helping me to unfold into such unity of purpose. It was only by sharing this observation with a friend tonight that I could express these thoughts here.

She and I had recently trained people in emotionalCPR. In this practice one person can help another through an emotional crisis by, Connecting, emPowering and Revitalizing with them. In doing so, the person assisting also revitalizes them self. We noticed that in the evaluations several students said they did not understand the idea of our having a vital center. I said that in our eCPR course, I picture revitalization in terms of nourishing greater awareness and expression of our vital center.

But the idea of vitality merely being a center didn’t ring true to me. I conjectured, “I think I could more accurately describe the experience of revitalization as an expansion of my vital whole. ” My co-trainer resonated with that idea and said it made more sense to her than a vital center. A vital whole implied that we gain our greatest vitality from experiencing our wholeness not from some hidden center. Any experience, which diminishes my wholeness, is traumatic. It leaves me feeling wobbly and insecure.

Then the presence of another person, in their wholeness, being with me in the present moment, allows me to experience the fullness of my vital whole. That experience of my vital whole may be my being my criatura hermosa. I want to appreciate the beautiful creature, which is the core of my being and of everyone.

I want to help K in my group to master the “art form of relating.” Indeed, relating through our creatura language is closer to an art form than a linear, rational form. Ultimately we who have the lived experience of mastering the art form of relating, need to find the words, the music, the painting, the sculpted forms, to describe that art form to share with the rest of the isolated ones in society as they are still struggling to relate.

I see a future when the distinctions between biological and psychosocial descriptions melt in the face of a much greater unity based on the process of interactions in the present moment of existence. The dance of molecules expressing the art of relating may resonate with the dance between two people in love. Through love their minds, bodies, and spirits are closer to their vital whole, and both beings become a whole together.

References:

Bakhtin, M. M. (1984). Problems of Dostoevsky’s Poetics. Edited and translated by Caryl Emerson. Minneapolis: University of Minnesota Press.

Bateson, G. (1972). Steps to an Ecology of Mind: Collected Essays in Anthropology, Psychiatry, Evolution, and Epistemology. University of Chicago Press.

Bateson, G., and Bateson, MC. (1988). Angels Fear: Towards an Epistemology of the Sacred. University of Chicago Press.

The summer day arrived where the child entered this world. The mother laid hemorrhaging, barely conscious, and the child upon birth was whisked away from the mother to the neo-natal unit. The sounds of medical equipment, the frantic voices of the medical staff, bright lights, and poking and prodding by invasive medical instruments greeted the child’s entry to the world. From the hospital, the child would enter the family’s home for the first time. Once again only to be subjected to grave brutality as on the night he entered the home, his father intoxicated begins to savagely beat the mother. “I told you to shut up!” the father shouts and with a loud crack across the mother’s cheek, she falls to the ground clutching the infant in her arms. And this would continue day after day until the police one day arrived to escort the father to a long incarceration for his violent crimes and drug possession.

A few days before the arrest, the mother leaves the home to obtain groceries for the family. She instructs the father to bathe the child and place him in bed. The father once again becoming intoxicated places the child in the bathtub but too sedated to realize the temperature of the water, scalds the child, and he is left with a large burn upon the side of his head. A scar that still remains both physically and emotionally.

For the next four years, the child barely speaks. The trauma of his world has muted him. The mother in desperation seeks for another relationship that will ease the financial burden and maybe find her the fulfillment she has longed for. But again, she stumbles into an abusive relationship.

The new man in her life is more a monster than the first. Day after day he subjects the child to demeaning words.”You retard! Why can’t you do anything right?” “If you don’t get out of here, I will smash your head in.” One night the child sees the mother and her boyfriend fighting and shoving one another. He goes to bed only to awaken to find the mother and her boyfriend sitting at the breakfast table casually chatting. He asks about the night before. “What are you talking about? You must have been dreaming.”

The child dazes off confused and questioning his sense of reality. Was it a dream? The child became the scapegoat for the family. “If we never had you around, life would be good.” “You are the one who causes all the problems.” “Look what you have made your sister into.” Day after day, his esteem plummets to nothing.

The family continues their civil war. The demons of hopelessness and despair overtake the child. His light is nearly extinguished. The child begins to curse God. Where is God in this? Why must I endure this pain and turmoil. He expects to hear God speak to him, but he hears nothing. God appears distant, or maybe dead. The child has no voice and no relationships. No one to console him, no one to hear his cries.

And God too does not respond to his pleas. But even in this darkest night of his soul, the light is not extinguished. The child encounters one who for the first time hears his voice, and he begins to embark on a journey of renewal. The war around him has not ended, nor is there a cease fire to come, but the child through this alliance begins to realize that he is loved and that he is heard. He is encouraged to find value in himself. He looks deeply within and finds that life is impermanent. He begins to understand the cumulative sufferings we all endure.

But in this he realizes that there is a better way. The way out does not exist in self-destruction. Death and despair is not a better way but merely an escape. He begins to realize that he cannot change circumstances, he cannot change others, but he can change himself and he can change his mind. The child begins to lay aside the cumulative traumas. They no longer torment him but become an opportunity for sharing and growth. He unites his sufferings to the sufferings of others and realizes that his experience is valuable and maybe through his experience, he may lead but another soul out of the darkness.

 ——

It is an honor to be in Philadelphia, the city of “brotherly love”, as one voice among many in this Occupation of the American Psychiatric Association, brilliantly organized by MindFreedom International.

It is an honor to be a part of a civil rights movement so vital to our age, yet still so invisible to the majority of our country and much of the world.

It is an honor to be able to call myself a psychiatric survivor, especially one representing my generation— the medicated generation, a generation in which facing the emotional upheaval that comes with hitting puberty has meant being diagnosed with bipolar disorder, ADHD, depression, anxiety, or schizophrenia and subsequently medicated with brightly colored capsules and bitter-tasting tablets.

My generation has grown up believing that if we can’t focus on our work because we’re distracted by the boy we have a crush on, by the upcoming game we’re playing in, or by the constant bombardment of media from which we can’t escape, we have a brain disease.  If we find ourselves experiencing intense emotions that seem, at times, unbearable, we must go to psychiatry to tell us how to bear them.  If we have thoughts too intensely creative, we are ‘grandiose’, ‘delusional’, or even ‘psychotic’.  If our thoughts move so quickly that we chase after them with our spoken words, we have ‘pressured speech’ or ‘tangential thinking’.  If we feel misunderstood, marginalized, isolated, or disillusioned by this complicated thing called life, we have a chemical imbalance with only one solution—a solution that means turning our agency over to a psychiatric label and our sense of self— our livelihood, our ability to feel innate feelings and think innate thoughts— to a bottle of lifeless pills.

To stand here before you as a person who ingested the intoxicating language of psychiatry and began to speak it as her own, who incorporated the clinical gaze and began to see herself entirely through its lens, brings a flood of emotions that I am proud to say today is completely, entirely human.  My feelings are not ‘symptomatic’ of illness, and I do not ‘lack insight into my mental condition’.  These emotions bring with them the pain that came with being labeled ‘abnormal’ and unacceptable by society for my most formative years; with carrying a diagnosis after my name that meant I would always be different, always fighting to appear like everyone else, struggling to manage life instead of living it.  I was bipolar, from my teenage years until age twenty-seven, and I was convinced it was all I ever would be.

I became adept at staying on top of my ‘symptoms’, of letting my psychiatrist know when I was having ‘racing thoughts’ or ruminating too much on the meaning of life and my part in it so that she could adjust my medications appropriately, or maybe throw a new, more ‘sophisticated’ prescription into the mix.  I thought I was making my psychiatrist proud by learning the language of the Diagnostic and Statistical Manual to describe myself, and knew that because I’d never be successful at anything else in my life due to my ‘chronic mental illness’, I could at least excel at becoming good at being a patient.

During my thirteen years in the mental health system, I believed that I was broken and incapable of being fixed.  That I needed psychiatry to create a life that came anywhere close to being considered ‘normal’.  That my emotional suffering was due to something wrong with my brain, and not to the fact that I was a young girl trying to make sense of herself in a culture based so much on performance, achievement, and perfection.  That the emptiness I felt inside, beneath the masks I wore and the parts I played to keep up with everything I saw around me, was because I was severely ‘borderline’.  I kept waiting and waiting for the day to come when my psychiatrist and my medications would give me a life worth living, and that day never came.  Instead, my life became lonelier, emptier, and number than it had ever been before, and living it grew increasingly more challenging.  Desperate for relief, I spent more and more hours in psychiatric treatment and left many months with an additional prescription in hand.

I am proud of my story and at peace with my past, with the dark depths to which I went before I found my way to the light of my recovery from psychiatric labels and psychotropic medications.  This is the beautiful paradox of it all— that in order for my life to be what it is today, full of meaning and purpose, everything that happened on my journey into psychiatry and out of it had to happen just as it did, from having dreams and aspirations for the future fizzle to being entirely stripped of any meaningful sense of self.  I have accepted my past, and, in a strange way, am grateful for it.  The profound anger I have today, for those still labeled and still trapped within the biomedical paradigm of psychiatry, is a healthy one that fuels me and motivates me to do whatever I can to make a change, from sharing my story at madinamerica.com, to working as a peer specialist in the belly of the beast, the mental health system itself, and to participating in amazing events like this one, today.

It is one of the greatest existential insults to slap a biomedical label onto the experience of being an emotive human being, no matter how well-intentioned the labeler may be. Today, label-free and in recovery, I am genuinely connected to a sense of who I am and of what I believe in, and I experience my emotions with the beautiful knowledge that I am no different— no better, no worse— than anyone else.  I am a thread in the greater human fabric that weaves us all together and unites us, regardless of the emotions we feel and the thoughts we think.

If you are here today and believe that the speech I just gave is all the more proof of how ‘mentally ill’ I am, I respect your right to believe what you want, and only ask that you keep an open mind and an open heart to what we have to say today.  If you are here today and have freed yourself from psychiatric labels, I send you a deep and loving congratulations.  If you are here today, still enslaved by your labels and the ‘treatment’ they require, and want liberation, join this movement and find your own path to recovery.  We are here waiting for you, to walk together on this journey towards equality and justice for everyone, regardless of how uniquely each of us experiences this complicated, painful, and unbelievably beautiful thing called life.

Related Items “In the News“:
Schizophrenia Outcome Still Better in Developing Countries
DSM-5 Field Trials Fail to Compare New Diagnostic Criteria with DSM-IV Criteria
Incoming APA President Emphasizes “Positive Psychiatry”
Antipsychotic Drugs and Relapse
Weak Field Trials Scuttle DSM-5 Diagnoses
Benzos Quadruple the Risk of Suicide in Schizophrenia
DSM-5 Retreats from Some Controversial Diagnoses
Ethics Complaints Over DSM Filed With the APA

Written communication is tricky when I have lots of time for revisions, edits and spell checks. Writing back and forth in the comment section is like having a whole lot of new high-speed pen-pals all at once whose faces I may well never see.

I was caught off guard by the intensity of expressed emotions, the willingness to reveal personal experiences and the genuine tenderness and warmth.

And we’re still talking to each other. Mostly. I think. That’s amazing. And wonderful.

This morning I flipped through my idea pile; the barely conceived, the half-done and the near done, looking for what to write next. I could find nothing that really pulled at my heart. Sure, I have a lot to say about a lot of things. Trust me on this one. I do. But not one of these scraps of ideas feels like what I need to write today.

This brisk, multi-partied public conversation we’ve had over the past few days has stirred a great deal up from the bottom of my pond. I’ve learned a lot. I’ve been given fresh humility with regard to the generosity, caring and resilience of my fellow humans. I was aware of these things. But they now have a sparkling new coat.

Today, all the subjects in my “write next” pile are flat and tasteless beside the real conversations and relationships we’ve miraculously forged with nothing but words riding electrons inside cables and invisible vibrations though the sky. These are the seeds of genuine human connections. When I decided to take a swing at writing on MIA, I had no idea this was possible. I am more than a little humbled by this.

Today, I wish my words could reach out to each of you who reads them and hug you. Okay. I hope you understand this to be a loving impulse. I suspect not every single one of you reading these words would want this “word hug” from me. Still, this is how I feel as I type these words on my laptop with the cool breeze blowing through the open window beside me.

First the pond. Then learning and humility.

I live in an small pond created and maintained by me. I keep the water of my life as still as I can so that I can navigate everyday life as a psychiatrist, writer, wife and mother. I work outside the home as little as possible. The TV and radio is off. I ignore current events and news. I go to bed early and get up in the quiet dark to write. We eat at home. Until this sabattical I did not have internet at home. What I know about the “real world” comes from everyday life and conversations with real people.

I keep plenty of slack in the fabric of my life. When life throws me a curveball, I can generally catch it. This approach to living has good parts. The mud stays down, the water remains clear and the family gets dinner. I’m certain many would find my life dull.

The drawback to this intentionally mundane existence is that my world view becomes more narrow and shallow as the settled mud of passing time and life builds up. Plus, there’s a lot of reality I don’t get exposed to.

These recent on-line conversations have been pond-stirring for me. I thank everyone for sticking their paddles in the pond and gracing me with truths from their lives. My pond is muddier now but it’s also deeper. I seem to see better with more mud in my water this week. There is more to think about.

Learning and humility is tougher for me to think and write about than the pond. When I have a visual metaphor like a pond, it’s easier for me to explore thoughts and feelings. It gives me a patch of reality to swim around in and look at.

As I think about my new learning that has come from our recent conversations, I find it to be inextricably woven with humility.

Why don’t I tell you about three things I’ve learned. I’m certain there will be more understanding yet to come for me. Different lessons come at different times. These three are simply for starters.

First, real people with deep feelings reveal their traumatic experiences and sensitive selves here. They open their hearts and leave themselves vulnerable. This is where my new-found humility enters the picture. I’m humbled by the courage it takes to write personal truths before unknown and invisible eyes. I wasn’t expecting these: the revelations, the emotions or the courage.

Second. I’ve learned, again, the power of saying ‘I’m sorry’. There are so many hurts in this world and never enough forgiveness. There are some incredible peacemakers here among us when we move beyond the pain and anger. This gives me more humility. It also infuses my life with hope. I find I can’t have too much of either humility or hope.

Third. We are all one. In ways I am not able to say in words, all of us are connected. I know this and feel this but my words are inadequate to the speaking of it. Here’s that humble feeling again. It wells up inside me like clear cool water and comes from my eyes as tears.

While many of the blog spots focus on the untruths of chemical imbalances, the problems with psychiatry, Big PhRMA, etc. there has not been as much focus on where we go from here or “next steps”.  Let’s agree that the story Bob and others are telling is true.  What do local systems of care do with this information?  How do we go about undoing a mental health system whose fundamental assumptions are false?  What’s the best way to remake a system of care based on what we do know?

It is to this end; Bob has graciously agreed to allow me to post about the work going on in Ashland County Ohio.  I have the great pleasure of working for what Ohio calls a “Mental Health Board.”  Boards represent all 88 counties in the State and were statutorily created to be the local, planning, funding, monitoring and evaluative bodies for federal, state and local mental health services.  In short, Boards are in a position to make a difference.

What I hope to show over a series of postings is the work our specific Board has started, how we’ve done it, where we may have gone right and wrong, and where we think we’re headed.  We’re hopeful that other policy makers with similar roles in other states who also have become convinced of the evidence written about by Bob will be able to find use in what we’re doing and apply it to their local situation.  We understand that what we talk about will not “fit” for every system of care and some things you may just find silly.  I look forward to reading the comments to see just how silly you think we are!

I understand for some this blog will have little to no appeal and that’s fine.  Not everyone can be interested in the same things.  We need the passion of the recovery stories, the advocacy blogs, the news stories and spotlight on international efforts.  Bob has done a nice job giving voice to many perspectives.  However, I think we need a blog for those interested in making administrative and policy changes too.  We need ideas about how to pay for services that really work and are respectful of a person’s choices. We need to talk about fee-for-service versus capitated systems, productivity and paperwork.

In short, we need a blog to talk about how to make the mental health system “sausage.”  For the uninitiated, yes, it really does smell that bad.  We really do have to consider local, state and federal guidelines/mandates even when they seem to be counterproductive.  Consideration has to be given to a County’s local politics, quality of provider network, degree of motivation for the changes we’re trying to bring about, etc.  For those of you experienced in making the “sausage” that is mental health policy, I hope the blog can serve as a way to share recipes and invent new and creative ways to bring about the change we all seem to be seeking.

Related Items:

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Why Can’t They Hear Our Truth? We Have a Cure
What a new role for psychiatrists might look like
How entrepreneurial thinking can improve mental health advocacy
Why We Need Mental Health Social Entrepreneurship

Anti-Authoritarians and Schizophrenia: Do Rebels Who Defy Treatment Do Better?

While many Americans are troubled by psychiatry’s over medicating of children, and they doubt the legitimacy of some psychiatric illnesses such as “oppositional defiant disorder,” few question psychiatry with respect to schizophrenia, an often frightening phenomenon characterized by hallucinations, delusions, incoherent speech, and bizarre behaviors. But a major long-term study on schizophrenia challenges psychiatry’s authority here as well, and it just may get Americans to pay attention to a group of anti-authoritarians diagnosed with schizophrenia who have recovered without medication or doctors—and have become activists.

In February 2012, University of Illinois College of Medicine researcher Martin Harrow published, “Do All Schizophrenia Patients Need Antipsychotic Treatment Continuously Throughout their Lifetime? A 20-Year Longitudinal Study,” funded by the National Institute of Mental Health and the United States Public Health Service.

Harrow and his research team found that schizophrenia patients who were “not on antipsychotics [which include “typicals” such as Thorazine and Haldol, and “atypicals” such as Zyprexa, Risperdal, Seroquel, Geodon, and Abilify] for prolonged periods were significantly less likely to be psychotic and experienced more periods of recovery.”

Unseen by most psychiatrists and other mental health professionals, there is a group of people diagnosed with schizophrenia who, at some point, reject doctors and medication and are in recovery. How big is this group? Harrow reports, “Our 20-year data indicate that the subsample of SZ [schizophrenic patients] not on antipsychotics represent a moderate-sized group (30–40%) of SZ”; and many of them, according to Harrow’s results, achieve recovery without doctors. Some within this group are self-identified “psychiatric survivors,” activists who fight against coercive treatments and for informed choice and more treatment options.

Welcome to a Cool Subculture of Anti-Authoritarians

If my sole experience of people who had been diagnosed with schizophrenia was purely a clinical one, I too would be wary of them going off their medication, and I too would have a far less hopeful view of the possibility of recovery. One of my earliest professional positions was as a psychiatric emergency room therapist where I saw many patients who were agitated and acting bizarrely and who were dragged into the hospital by police and family. These patients were diagnosed with schizophrenia, schizoffective disorder, or some other psychotic disorder. Most of them would in fact calm down after being given medication, and so it is common for police, family, and mental health professionals to view being “off one’s meds” as problematic.

Many mental health professionals, myself included, have seen psychotic relapse among diagnosed schizophrenics who have been “medication noncompliant.” But professionals ordinarily don’t compare this group to those “medication compliant” patients who also relapse or remain chronically psychotic. And most importantly, in their clinical practice, mental health professionals do not routinely see diagnosed schizophrenics who have recovered without medication and without doctors.

Outside of my practice, I have come to know this group of diagnosed schizophrenics who have long-term recovery without medication. In his research, Harrow discovered them as well and states, “For most SZ [schizophrenia patients] not on medications or not in treatment this was their choice, at times against professional advice.” It is my experience that those who have rejected medication and recovered are virtually all anti-authoritarians who question the legitimacy of authorities and resist those authorities they assess to be illegitimate ones.

I had not heard about psychiatric survivors until 1994, when I was contacted by David Oaks, director of MindFreedom, a coalition of psychiatric survivor organizations from around the world. David, now a good friend, comes from a working class family in the South Side of Chicago and won scholarships to attend Harvard in the early 1970s, but he says, “I didn’t fit in at Harvard, and I was under a lot of stress. Now and again I ingested too much cannabis, to which I’m highly sensitive. I stopped sleeping.” His behavior became erratic with psychotic symptoms (e.g., “thought the CIA was making my teeth grow” and that “a UFO was appearing in my living room”). He was checked into various psychiatric facilities five different times. David recalls, “A dozen psychiatrists diagnosed me as a psychotic. I was told I would have to stay on psychiatric drugs the rest of my life, like a diabetic on insulin. I was told that I was genetically flawed and had a permanently broken brain.”

David ultimately joined the then existing Mental Patients Liberation Front where fellow psychiatric survivors shared stories, went on camping trips, and supported and encouraged each other to exercise and eat better. David graduated with honors from Harvard, and he has been free of psychiatric medication since 1977. Today, he is living in Eugene, Oregon, married, directs MindFreedom, and maintains a busy schedule of organizing and speaking around the world.

I’ve become friends with many other people who were once diagnosed as schizophrenic or with other psychotic disorder but who have moved into long-term recovery without psychiatric drugs (see their personal stories). They include Alaskan attorney Jim Gottstein, now President/CEO of the Law Project for Psychiatric Rights, and currently a leading organizer of Occupy the American Psychiatric Association in Philadelphia on May 5. Will Hall, now a psychotherapist and a radio host, co-founded the peer-support organization Freedom Center in Western Massachusetts along with Oryx Cohen, who is now the Technical Assistance Director at the National Empowerment Center (NEC).

Oryx and psychiatrist Dan Fisher, NEC director, like the term lived experience for those who have experienced hallucinations, delusions, and other “extreme states.” And the mission of NEC is “to carry a message of recovery, empowerment, hope and healing to people with lived experience with mental health issues, trauma, and and/or extreme states.”

Dan Fisher was psychiatrically hospitalized several times prior to becoming a psychiatrist, and he is one of the few psychiatrists in the world who publicly discusses his own recovery from schizophrenia. For anybody who doubts the possibility of full recovery from schizophrenia without psychiatry’s “standard of care” and who could also use a strong dose of morale, I recommend the video Psychiatrist Daniel Fisher Talks about Hope and Recovery.

I have spent time with hundreds of treatment reform activists who were once diagnosed with schizophrenia but who have recovered without medication, and my experience is that they consider themselves lucky to have had family and/or friend support for their choice to resist psychiatric authorities. They tell me that overwhelming anxiety is often a trigger for relapse, and having family or friends with confidence in the possibility of recovery and in their treatment choices is a great anxiety reducer.

Harrow’s Study

Martin Harrow and his research team enrolled patients from two Chicago hospitals diagnosed with schizophrenia (as well as patients diagnosed with mood disorders with psychosis), so as to examine long-term outcomes. All of the patients had received conventional medication treatments when hospitalized, and then Harrow followed them as their lives unfolded, periodically assessing how well they were doing. The majority of patients continued their antipsychotic medications, while about a third of them did not comply with medication treatment and stopped taking them.

The 20-year results showed that schizophrenia patients (and those patients with mood disorders with psychosis) who took antipsychotic medication regularly during the 20 years actually experienced more psychosis, more anxiety, and were more cognitively impaired and had fewer periods of sustained recovery than those who quit taking antipsychotic medications.

“Recovery,” according to the study criteria, required no psychotic symptoms, no rehospitalizations during the follow-up year, and partially adequate (or better) work and social functioning. Among the schizophrenia patients who remained continuously on antipsychotics throughout the 20 years of the study, only 17% ever entered into any period of recovery during any of the six follow-ups. By contrast, among the schizophrenia patients who remained off antipsychotics after the two-year follow-up and for the remainder of the 20 years, 87% experienced two or more periods of recovery.

Harrow’s results are inconvenient for the psychiatric establishment because, as Harrow points out, “Prolonged use of antipsychotic medications is the current standard of care in the field and is viewed as the cornerstone of treatment for SZ [schizophrenia patients].” And the pharmaceutical industry has good reason to want Harrow’s study buried, as antipsychotics are now the largest grossing class of drugs in the United States, grossing $16 billion in 2010. So, the psychiatric establishment and the corporate press have, for the most part, ignored Harrow’s findings.

The psychiatric establishment would like the public to believe that diagnosed schizophrenics who stopped taking their medication and gained recovery must have either been misdiagnosed or were less severely psychotic. However, Harrow makes clear, “At the 2-year assessment there were no significant differences in severity of psychosis between SZ on antipsychotic medications and SZ not on any medications. However, starting at the 4.5-year follow-ups and continuing over the next 15 years, the SZ who were not on antipsychotic medications were significantly less psychotic than those on antipsychotics.”

Explanations for Harrow’s Findings

Harrow concludes that those who stopped taking medication, while not initially different in severity of psychosis than the medication compliant group, are a “self-selected group with better internal resources associated with greater resiliency. They have better prognostic factors, better pre-morbid developmental achievements, less vulnerability to anxiety, better neurocognitive skills, less vulnerability to psychosis and experience more periods of recovery.”

For journalist Robert Whitaker, winner of the George Polk Award for Medical Writing and author Anatomy of an Epidemic, the most plausible explanation for why patients not on antipsychotics were significantly less likely to be psychotic and experienced more periods of recovery is that the medication non-compliant group was not damaged by long-term use of medication.

Whitaker, in “Interpreting Harrow’s 20-Year Results: Are the Drugs to Blame?” notes, “Those with milder psychotic disorders could be expected to have a better long-term course than those diagnosed with schizophrenia. Yet, the schizophrenia patients off meds fared better over the long-term than those with milder disorders on the medications. If the drugs have long-term iatrogenic effects, wouldn’t that explain this surprising outcome?” Whitaker points out, “Nancy Andreasen [one of psychiatry’s most respected researchers] has reported that antipsychotic usage is associated with a decrease in brain volumes over time, and that this decrease in brain volumes is associated with an increase in negative symptoms and cognitive impairment.”

The Harrow study results offer other support for Whitaker’s explanation of the long-term damage of medication. At the two-year follow up, an equal percentage, about 50% of medication compliant schizophrenia patients and 50% of the medication noncompliant schizophrenia patients, experienced “high anxiety.” But at the 4.5 year mark, 75% of the medication compliant group had “high anxiety,” while only about 20% of the medication noncompliant group experienced “high anxiety,” and this same difference persisted at the 20-year follow up. Harrow notes, “Some have proposed that, over a prolonged period of antipsychotic treatment, supersensitivity of dopamine receptors may occur as a compensation of the brain for many years of reduced dopamine resulting from dopamine blockade,” as many medicated patients develop tolerance for their antipsychotics, which means they need an increasingly higher dosage to reduce their anxiety.

So, was the greater recovery among the medication non-compliant directly caused by what Harrow calls their greater “protective factors” and “internal resources”? Or did those protective factors and internal resources provide some patients diagnosed with schizophrenia the strength and resolve to resist psychiatric treatment and thus not be damaged by the medication?

Harrow’s Recommendations

Harrow’s study does not challenge the idea that for those in the acute phase of a psychotic reaction, the short-term use of some tranquilizing medication can be helpful. Harrow’s results do challenge the idea that all patients diagnosed with schizophrenia or other psychotic disorders need to remain on psychiatric medication throughout their lives.

Harrow’s recommendations, given the study results and the adverse effects of antipsychotics, might sound conservative to the general public but are heretical to the psychiatric establishment. Specifically, Harrow recommends: “If protective factors are present and the SZ [schizophrenia patients] has already shown some periods of recovery, and wants to try a period without antipsychotics, then he/she is a good candidate to try going off antipsychotics, although, as with many other medical procedures, there is no certainty of the results.”

There are some mental health treatment activists in MindFreedom, the Freedom Center, and the National Empowerment Center who utilize medications to reduce their anxiety or to help them sleep so they can function. But Martin Harrow’s study and the lives of David Oaks, Jim Gottstein, Will Hall, Orxy Cohen, Dan Fisher, and many others dispel the myth that people do not fully recover from multiple psychotic states. The fact is that people can experience long-term recovery from schizophrenia and other psychotic states without medication, and for many of these people, rejecting mainstream psychiatric treatment has been their salvation.

Bruce E. Levine, a practicing clinical psychologist, writes and speaks about how society, culture, politics and psychology intersect. His latest book is Get Up, Stand Up: Uniting Populists, Energizing the Defeated, and Battling the Corporate Elite. His Web site is www.brucelevine.net

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Are Some Psychiatrists Addicted to Deference?
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What would modern psychiatry make of these voices in the wilderness? What would they say of those who would dare to radically challenge their society and its standards? They would be locked away, forced drugs, labeled, never understood. And maybe it is time, that we realize that those who we may be labeling presently, may also have an important message, that their experience no matter how unconventional, or unusual, eccentric, may have meaning, it may actually say something we need to hear and pay attention to. Often those labeled as ‘seriously mentally ill’ are also speaking out about the oppression they have endured and that of our society. Maybe we can begin to appreciate them, to journey with them, seek to understand, and to put aside all our assumptions and judgments, to embrace the madness, and even go as far as to see the experience as sacred, as something necessary for some. An experience, which with the proper support need not be breakdown but breakthrough.

My remarks here are based on working side by side, everyday for over 30 years with my friends and colleagues who are psychiatrists. Some of them seemed to suffer from what I would, in good nature at times describe to them, as an addiction to deference!

Most Psychiatrists come from middle class backgrounds and have accomplished a huge feat to get an MD and to practice psychiatry. They are accorded deference in a professional hierarchical class structure based on merit, that reflects another way that our classist society stratifies itself.

Their daily and decades long experience is that every nurse, secretary and other mental health professional in every clinic and hospital, will defer to their judgment and authority, due to their status and more advanced degree and license to practice medicine.

The medical settings where they work positions them at the top, in terms of pay and status and authority- and the huge power to prescribe medical treatments that are exclusive to their profession. Sometimes these treatments can only be done on a doctor’s order- such as ECT, forced and voluntary medications and restraints.

Having worked along side psychiatrists everyday for all these years, I can only say they have always been shocked when I did not defer to them.

They would want the last word in every decision about every treatment they authorize or drug they prescribe with “their patients”- as they proprietarily call consumers, because they believe their license requires them to take sole responsibility for the quality of care given.

When necessary I would not give them the last word. I hold my obligations to the people I serve as an ethical and sacred trust too.

From decades of experiencing psychiatrists reactions to me when I would professionally, and while showing them all due personal respect, not defer to them about decisions that effect the consumers I served, I learned that a huge obstacle to the honest debate that non-psychiatrists would have with them, is caused by the fact that such questioning of a psychiatrist’s theory, research and practice is so often experienced by them as impertinence.

In those 30 years I was almost always the only professional I knew who openly and consistently would not defer to them if need be. It slowly occurred to me, that a regression to the psycho-familial grips a great many psychologists and other professionals in the field, when faced with the psychiatrist’s expectation that they should defer.

The old adage that children are to be seen and not heard, feels like the unspoken message, and in fear of surrogate parental anger, a child-like regression seems to block some adult care givers from speaking up with psychiatrists.

There are real time consequences for other professionals challenging the psychiatric authority that claims an absolute position of superiority in the meritocracy hierarchy. That hierarchy replicates the power dynamic we experienced with our parents.

In addition to serving consumers 40 hours per week for 30 years, I believed that part of my service as the elected president for 16 of those same years, of my 250 white collar union mental health staff unit, was to embolden co-workers to question authority and stand up for themselves and the rights of the consumers we served. As human rights activists, we needed to do that with mental health system administrators and politicians as well.

Sadly, only a handful of my co-workers were consistently able to speak truth to power.

So, if you are a psychiatrist reading this now who probably never has experienced any response but being deferred to for the reasons I have given, you may feel like the psychiatrist who glared at Bob Whitaker all through a presentation Bob was doing, that I heard him report about at a conference.

As I heard Bob’s telling of the story, it went something like this- the glaring psychiatrist approached Bob after his presentation. Bob was hoping for a forthright exchange about the research issues that he had offered for consideration. The psychiatrist instead said something like- “I came up to tell you that I am not interested in your ideas or to discuss them with you- I just want you to know this Mr. Whitaker- I do not like your attitude.”

This exchange with Bob, captures the feeling tone of all of those times I would respectfully challenge the stated opinions of psychiatrists, as for example, when I witnessed them telling many consumers I served in therapy, that they had a life long, genetic based brain disease, that would require them to be on medication for the remainder of their lives.

First things first. Don’t defer to anyone who says what you do not believe to be true.

Related Item:
Anti-Authoritarians and Schizophrenia: Do Rebels Who Defy Treatment Do Better?

First, there are those who let me know they find it offensive that a good-natured and intelligent woman, as I see myself, could be drawn to the practice of psychiatry by the happy feeling of having fun at work and the desire to help others. This concept strikes them as unbelievable.

Second. The simple statement that I have a medical degree and professional title triggers angry reactions from some folks. For a few, this is not an innocuous reaction.

My understanding of the mission of Robert Whitaker’s webzine is to foster cooperative discussion and help move us beyond the current pill-based medical paradigm toward better models to reduce human suffering. I have gotten the feeling from a couple of participants in this discussion that the addition of my psychiatrist’s paddle to this boat is not entirely welcome. Still, we are all in this one boat.

First, happy and fun. Then, names and titles.

The idea that I could smile and have fun at work in a locked psychiatric unit and that I could enjoy my time with patients, for a few, paints me with the tar of Nazi genocide.

Wow. I had no idea.

I wrote about my sense of happiness and fun with the thought that people would like to know that I, as a human being and psychiatrist, have found my path though the same leadings of the spirit as others who enjoy their work.

I regret that my enjoyment of my work troubles people. However, I will not stop looking for ways to feel happy and have fun, whatever work I do. I don’t work any longer than necessary where there is no “fun” or “smiling”. I once took a mental health clinic job that lacked “fun”. I walked away on day two.

My dentist takes genuine enjoyment when he pulls teeth or drills cavities. I would not so I don’t work there. His obvious fun in his professional work makes it easier for me to go there when I need to. I have “fired” dentists whose motives to be at work did not include any obvious happiness.

I would feel sad if you told me you never have “fun” at your work and are not “happy” there. Whether I want help with a painful gall bladder or painful grief, I hope to locate a helping professional who is there because this is pleasant and fun for her.

I’ve met doctors who were not having fun. The results I’ve gotten in those situations were not useful. Even in non-medical settings, I’ve found the outcomes better if the person enjoys what they do.

The list of things that make me smile and happy at my work are pretty much the same as others in helping professions: seeing people take their personal power back, watching them find ways to feel happy and helping them suffer less.

Now, as far as names and titles go:

I do introduce myself to my patients as Dr. Keys. I tell them they may call me Alice and ask what they would like to be called. I think it’s clarifying to let people know my professional designation, especially in crisis work where this is not always clear because patients see many new “providers” in one trip.

I disagree with the assumption that stepping into my role as physician by calling myself a “doctor” when I am with a “patient” is inherently wrong or hurtful. When you go to professionals for help, you seek expertise. When you feel overwhelmed, out of personal resources and don’t know what to do, you want to talk to someone who has ideas about what to do next.

Back to my dentist. He is my doctor. I am his patient. I certainly do not feel “trivialized” or “infantilized” by this labeling in the context of our relationship. I go there because he has ways to help that I can’t manage alone. I call him “the doctor”.

I also call my dog’s veterinarian “the doctor”. Heck. I even call my doctor, “the doctor” and my kids’ pediatrician, “the doctor”. It’s what they are.

So am I.

A doctor, that is.

I’ve seen over the years, particularly in community mental health work, a constant re-naming.

Remember. Words create the world. Words matter. The naming of things makes a powerful difference.

In the early nineties, I was no longer called a physician or doctor or even a psychiatrist, but a “prescriber” in community mental health. I was introduced by first name only. No white coats. I was told that the “clients” were too “sensitive” for me to wear a white coat or be called a doctor in front of them. The patients had to ask me “So, are you a doctor?”

I find this “prescriber” designation to be an offensive trivialization of the depth and breadth of my skills and education. I was in school and professional training until the age of 31. I am licensed to practice medicine and surgery by the state. But with this “prescriber” label I am reduced to an interchangeable cog in the closet with a prescription pad attached to my hand.

These days I am referred to as the “LMP”. It stands for “licensed medical provider” to those in charge of such renaming. But to me, in routine medical history taking, it stands for the first day of your “last menstrual period”.

I suspect motives behind this professional renaming may include the desires of pharmaceutical purveyors to broaden the river of drugs that leads from their wellspring, through third party payers and to what we now call “consumers of mental health services”.

To increase patient “access” to drugs, there was a political movement that lead to prescription writing for nurses and, in Oregon now, for naturopaths as well. Psychologists have snagged this “prescribing privilege” in two states and the military. Social workers have lobbied to snag this “LMP” designation. I wonder where the money to back these agendas comes from.

If you lower the common denominator from physician to “prescriber”, then anyone can do this job. Perhaps the masters degree educators label individuals with psychiatric diagnoses in Oregon could also be given a prescription pad. Think of the improved rate of flow of psycho-stimulants to our school children (insert irony here).

My patients have also been renamed: “clients”, “CMI”, “consumers” and “SPMI”. I have heard  the word “visitors” in use. One new name I learned recently is “citizen”.

Here’s my rant:

Architects have “clients”. “Consumers” eat and drink things. “Guests” come over in the afternoon for tea. “Visitors” drop by. “Citizens” have membership in a nation. I frequently treat patients that are not “citizens” of this country.

Prescribers only prescribe. LMP is the first day of your last menstrual period.

I am “the doctor” when I am with my “patient”.

Please call me “the Doctor.”

As it happens, I recently got an email from “David Bronstein,” the medical ghostwriter who appears in my book, White Coat, Black Hat.  Bronstein (a pseudonym) is a developmental biologist who provided some of the book’s best stories, especially his brutally hilarious accounts of his work for a “medical communications” company in the United Kingdom.  He was writing to tell me about a branded AstraZeneca t-shirt he had acquired at a conference many years ago.   It was designed to promote Seroquel.  “Get yourself in the mood,” the t-shirt read.  “Ride the Mood Elevator.”

The Mood Elevator was a converted flight simulator that AstraZeneca was taking around to psychiatric congresses.  “It was about the size of a small ship container,” Bronstein says.  “You could see it rearing up and bucking about, somewhat on its own on the far side of the exhibition hall.  But on closer inspection it wasn’t that great. I think it had been acquired from a fairground rather than Boeing or NASA and had been gotten up to look ‘futuristic’.”  The idea was to corral psychiatrists into riding the flight simulator as a way of simulating the ups and downs of bipolar disorder.

At the time, treating bipolar disorder with antipsychotic drugs was still relatively new.  Antipsychotics had traditionally been prescribed for patients with schizophrenia.   But that was before the development of the “atypical antipsychotics” such as Risperdal, Zyprexa and Seroquel in the 1990s.  The atypicals were touted (wrongly, as it happens) as having a better side-effect profile than the older antipychotics.  So drug makers such as AstraZeneca had begun to move aggressively into other “disease markets,” most notably bipolar disorder.  Hence the Mood Elevator.  Here is Bronstein’s description:

“The usual simpering agency women in their black business suits were in charge of the corralling, and as usual, their faces and sharp clothes on closer inspection looked tired.  We sat down inside in about 3 rows.  The ‘flight capacity’ was about 10, I think, but it was far from full. Then the lights dimmed, and with a hydraulic whine and jerk, the show began.”

“Instead of a fake airplane window they had this cheesy movie about a young middle class white woman with bipolar disorder.  Whoosh!  And up we went, with accompanying, cheesily dramatic music, to find ourselves inside her excited mind as she flirted with a black guy at a party.  Then crash: down we went into blue-lit, solitary despondency.  Then whoosh! Up we went again.  ‘I’ve got a date tonight with that gorgeous guy I met at the launderette,’ she sighed.  Then crash! Down we went into suicidal gloom.  Finally we reached a happy equilibrium full of flowers and ‘relaxation’ music.  She said she was so happy she got treatment in time, and that her sexual disease tests have checked out OK.”

“That was the end of the ride and we were turned out. We had ‘ridden the Mood Elevator.’  I wanted to chunder.  But I still have the t-shirt.”

I would be interested to hear from any readers who remember the Mood Elevator.  It sounds like a fairly benign marketing tool, at least compared to what came later.  In 2010, of course, AstraZeneca was forced to pay $520 million to settle federal charges that it had marketed Seroquel illegally, including the charge that the company had paid doctors to sign ghostwritten journal articles and give promotional talks about off-label uses of Seroquel.   Next to that, the Mood Elevator seems almost quaint, if a little tawdry.  As Bronstein puts it:

“Somewhere once, I’ve often wondered where, I came across a fictional account of some colossal mutant horse standing about, elephantine but somehow out of place on the edge of a shoddy fairground.  All I can remember of the description was that ‘it was not a figure of fun.’  That would be apt too for the Mood Elevator.  The movie’s quality was depressing, and somehow distasteful; like the contraption itself, neither the scripting nor the production appeared to have involved the agency’s premium talent. You came out feeling as if you’d got something sticky on your hand.”

(Originally posted at The Chronicle of Higher Education’s “Brainstorm” blog.)

Depression was a state of mind, just as inflammation is a state of tissue. In my training, we learned that generally depression would yield in three to six months, if we established a good therapeutic alliance and provided insightful support. Once that happened, we could get on with the real work of understanding the patient’s difficulties and changing his or her life. We weren’t “treating depression.” We were working out the patient’s difficulties.

That was a working hypothesis, not a discovery—a guiding principle of our work. The idea grew out of the psychoanalytic tradition and spread far beyond it, as different schools of thought gave different accounts of people’s suffering. But clinical experience showed that this approach, in all sorts of forms, “works.” Plenty of clinical research supported that claim.

However, as many critics (including me) pointed out, depression tends to be self-limiting, and it responds well to general support. So maybe all our talk about “issues” was mistaken. Maybe we just gave people the support they needed to get better, or to sustain themselves while the depression ran its natural course, and then kind of hoodwinked them into learning how to live the way our school of thought they should. People came to therapy, felt better, gave the therapy credit for their better mood, and became receptive to our ideas about what constitutes “health.”

Nowadays, “depression” has become a dread malady in its own right, a disorder, not a symptom. It’s apt to last forever, demanding that one learn to “manage” it through medication and various “skills.” Mental health care becomes less and less about understanding one’s self and one’s life, so that one can become better, and more and more about learning to manipulate one’s moods. Mental health professionals learn less and less about life, and more about mood manipulation.

Has this change come about because of scientific discovery? Well, no. It’s a shift in perspective—a different way of envisioning a vast swath of human suffering.

What we know is that depression, as an experience, is horrible. In a bout of full-blown depression, our emotional processes can come unraveled, losing their proper function of indicating the significance of circumstances and preparing us to deal with them appropriately. Our moods may go into free fall, throwing us into abject terror. The self seems to disintegrate, actively and inexorably, its pieces collapsing into fiery despair. As we experience it, nothing we do changes or slows or stops the agony, because the self itself, so to speak, loses purchase on its own functional integrity.

Depression in this sense is an experience, a state of mind, a complex phenomenon. It’s a stone fact about the world. We know it exists because we observe it, whether we understand it or not.

The current concept of depression as a mental disorder is different from the experience. Supposedly it explains the experience, but it does much more. It claims that an underlying disorder manifests itself in the experience, and in many other experiences—all the items on the DSM diagnostic checklist. Many of those don’t much resemble the experience of depression. “Depression” is the thing underneath. That’s why we have to be “diagnosed as” depressed.

Psychiatric researchers have decided to designate more and more states of mind, activities, or physical changes as signs of depression. They’ve made a list of mental, emotional, and physical events (low energy, pessimism, thoughts of suicide, sleep problems, etc.), given the list a name (depression), then told us that the things on the list are manifestations of the name.

Giving a list of items a name is perfectly fine—e.g., ‘grocery list,’ ‘fitness regimen,’ ‘travel itinerary.’ But the name is just a convenient way of referring to the list, not the cause of the things on the list. The name doesn’t explain anything.

Let me be very clear about what I’m saying. I’m not saying there’s no such thing as depression. Not at all. Having felt the horrid maw of major depression a couple of times myself, I would never say such a thing. But the concept of a disease entity named “depression,” a “depressive disorder” that underlies and accounts for the various items on the DSM checklist, is a different thing altogether. It’s an idea, not an experience.

Whether that idea will eventually bear fruit remains to be seen. So far, mostly it justifies whatever current theory researchers and clinicians want to pursue and indoctrinate patients to believe—the chemical imbalance theory, the serotonin dysregulation theory, the hippocampus-neuronal-death theory, the cognitive distortion theory, the failures of attachment theory, etc.

Someday, we may be able to identify, measure, and intervene in the postulated underlying disorder, if there actually is one. Some or all of the signs and symptoms on the DSM checklist may turn out to be manifestations of that underlying thing, and that thing may be changeable by direct intervention. We don’t know–but it’s worth noting that the track record for this effort isn’t very good.

The experience of depression is horrific, and when we’re in it, we want—need—it to stop. I am not convinced, though, that postulating a depressive disorder helps much with that. It serves the purposes of the mental health industry—it gives us an air of esoteric knowledge, a rationale for the claim that we can spot and explain this underlying disorder. It’s intellectually interesting, as we try to create new theories of just what this disorder comprises. But it’s not clear to me that it helps much with people’s suffering.

In fact, I would suggest that when we lump many different elements of experience into the general category “signs of depression,” and we see that “underlying depression” as the “real problem,” we tend to become ham-handed and obtuse in how we analyze experience, how we listen to clients, and how we respond to distress. I suspect it leads us to see disparate sorts of suffering, with disparate causes and avenues to relief, as “signs” of something other than themselves. And I suspect that leads us to overlook important distinctions, and important ways of helping.

I’ll explain that suspicion in future blog posts.

If madness, or psychosis, is just a result of a physical defect in the brain, then it makes sense to devote little effort to understanding the experiences of mad people, and to focus instead on suppressing such experiences as much as possible.  That’s what our vast “mental health” industry has been doing for decades, without success.  In this book, Williams outlines a very different approach, one that prioritizes understanding and valuing personal experiences.

Before writing this book, Williams spent time as a hang glider pilot, winning one world championship and several national awards.  He then experienced a mental crisis that could have been labeled psychosis, but he avoided getting diagnosed or “helped” by psychiatry, and instead worked through his experiences on his own.  This caused him to get interested in helping others, and he became a psychologist and also a researcher interested in detailed exploration of the experiences of people who underwent psychosis and then full recovery.   It seems clear that the depth of understanding in the book emerges out of his personal experiences and his interest in the experiences of others, while it may be that his experiences as a glider pilot helped him develop a habit of forming a clear overview of areas to be explored.  In any case, the view of madness that emerges appears to be a profound integration which has breadth and well as depth.

One of the key ideas is that psychosis, in the presence of the right conditions, can be expected to most commonly result in a positive outcome, an outcome that is something better than the state that existed before the psychosis.  This assertion flies in the face of most of what our culture thinks it “knows” about psychosis, but the arguments for it are very well documented.  This perspective should not be confused with some romantic notion that psychosis is always a good thing – Williams is clear that it is hazardous under the best of conditions, and likely to lead to major ongoing life difficulties when the focus is just on attempts to suppress the process, as usually happens in developed countries today.  But what is critical to note is that these poor outcomes are typically a result of a poor handling of the experience, and not of the nature of the experience itself.

Another key idea is that the core issues in madness are not a struggle with an “illness” experienced only by some, but rather a struggle with the existential issues that we all face, such as being caught between a fear of being separate and a fear of being overwhelmed or engulfed by connection.  Williams outlines how the ability to regulate one’s approach to such dilemmas is lost in psychosis, usually in response to a number of stressful experiences, but also how the loss of one’s prior approach has the potential to lead to the emergence of new and healthier ways of being organized, which might later benefit not just the individual but also the wider society.  He discusses these ideas first theoretically, and then by clear descriptions of how these issues played out for the individuals he researched, as they went through psychosis and then recovery.

Williams is arguing that psychotic experiences typically occur as part of a process of experimentation at a deep level of the mind, a risky process of profound disorganization and then reorganization.  He illustrates how standard mental health care interferes with rather than safely facilitates this process, and how recovery seems currently to only be possible when people manage to break away from the system to at least some degree.  He then sketches out the possibility of a very different system of care that would recognize the meaningfulness and positive potential in psychotic breakdown, one which would be likely to facilitate rather than impair recovery.

You can find out more about the book, and about what others are saying about the book, at http://rethinkingmadness.com/.

Also, in an upcoming live webinar, you will be able to hear about the central ideas in this book directly from Paris Williams, and you will also have an opportunity to ask questions. This will take place Friday May 18 2012, 10 AM Pacific time, 1 PM Eastern time.  Or, if you can’t make it on Friday, Williams will repeat the webinar on Saturday, May 19 2012, also at 10 AM Pacific time, 1 PM Eastern time.

Advance registration is required, as limited spots are available.  A suggested donation of $10 is requested, although no one will be turned away for lack of funds.

To register for the webinar on Friday May 18, 2012 at 10 AM Pacific Time, 1 PM Eastern Time, go to  http://rethinkingmadness1.eventbrite.com/
To register for the webinar on Saturday May 19, 2012 at  10 AM Pacific Time, 1 PM Eastern Time, go to  http://rethinkingmadness2.eventbrite.com/

We hope to make recorded copies of this webinar available afterward for people who can’t attend at either of these times.  You can contact me at 4ronunger@gmail.com if you want to be notified of when this is available, and/or if you would like to hear about future webinars about psychological approaches to psychosis – I am hoping to develop an extensive program of webinars on this subject.  In the future, some of these will likely come with CEUs for professionals, but these are not yet available.

I wish I had known the direction of this train and yanked the emergency brake and stopped it, back when it first began. I imagine that I could have thrown myself under the wheels to make it stop.

Then, I remind myself that martyrs are dead people. Being alive means I’m here to help design and build a new future. I can’t un-ring this bell.

My studies and recollections of history help me gain a more balanced understanding of where I am and how I got here. However, constant focus on the past impairs my ability to correct my forward direction. Focusing on where I went wrong and what’s wrong now, doesn’t give me new destinations.

In my search for direction, there’s a “quirk” in the human cognitive operating system I must remember. I was taught about this by my hypnotherapy teachers of long ago. During information processing, our big brain ignores negative modifiers such as “not” and “un”. What this means is, that when a doctor tells me “this won’t hurt”, my brain immediately goes on the hunt for “hurt”. It bypasses the negative modifier and finds “hurt”, even when this is not what I meant to say.

Imagine when you first drove a car on a twisty mountain road and looked down over the edge of a frightening cliff. You thought, “I don’t want to go over that cliff”. These thoughts tugged your hands on the wheel in the direction of the precipice and the car swerved closer to the edge.

Pointing my attention to the path I want to be on, helps keep me on it. Obviously, I need to know the cliffs are there. Not knowing about the danger is dangerous.

Even the word “free” is tricky to use in goals and plans. It seems like it should be a good word for these purposes. Except “fat-free” has me studying the label to look for the fat.

The word “free”, implies imprisonment, struggle and fights. I was taught a song in public school during the second grade that begins with the words “freedom isn’t free”. The next lines are “you have to pay the price, you have to sacrifice, for your liberty”. In my mind the word “free” is associated with unavoidable wars.

Visualize a battle and it will come. If a fight is what I want to have, this is easy to make happen. Incautious use of words can bring about wars I do not mean to have.

Whenever I catch myself focused on what I don’t want, I redirect my attention to make lists of what I do want. I make clear, specific, written goals. I read them every morning while I eat oatmeal.

“I don’t want to be fat” may be a good place to begin a search for a goal. Unless the focus is shifted to specific positive goals like “I want to be able to bend over to tie my shoes” or  “I want to comfortably walk around the block”, my powerful mind will paddle away to look for fat and find it for me.

I know pharmaceuticals are dangerous, profit-driven commercial products. I don’t want to prescribe them. But I learned from our country’s “war on drugs” that the policy of “just say ‘no’ to drugs” backfires.  Saying “no to drugs” drags our focus back to drugs every time we say it. If my goal is to “just say ‘no’ to fat” then I will always find fat around my middle to say ‘no’ to.

When I tell a colleague that I don’t want to prescribe psychiatric drugs, the conversation invariably shifts to “What about in this situation?” or “How about for a patient like that?” and “What if there’s a really, really good reason?”

How I set my goals is very, very important. The words I use matter. A lot.

If I want a war on psychiatry and psychiatric drugs, I’m certain to find one. If I want to break free of domination by behemoth multinational profiteering corporations then I’d better go straight over there and chain myself up to one.

A social worker in Portland Oregon wrote to me last week. He said that maybe someday, “over the rainbow”, we can put together a pro-education, pro-psychotherapy, pro-case management, pro-socialization, pro-creativity, community-based clinic. Wow. This is a guy that understands how the mind works in the process of goal-setting. And he has great ideas.

I’ve heard lots of great ideas since Robert Whitaker invited me to write for his “Mad in America” webzine. I love the reply section at the end of each article. I didn’t notice it before I agreed to write. I wondered, at first, if I was supposed to reply to those comments.

What the heck. I found the click button and wrote back.

Through these conversations, I discovered a thriving and diverse community of thoughtful individuals. I’ve met people from around the country and around the globe that I’m unlikely to have known otherwise. I’m impressed by the energy, the ideas, the warmth (and heat) in our conversations. Some people focus on the things we must avoid. We need these voices so we can know where the cliffs are. Many have already found and created better options for some who have been labeled as “mentally ill” and categorized as requiring a lifetime of medication.

These complex discussions include those that make us aware of the dangers and also those with a broad range of ideas for the future. They give me hope that all of us can find directions to move in for a better future. There is room at this table for everyone. All our voices together can be one voice for hope.

Hope was the spirit found in Pandora’s box after all the troubles were released upon the world. I hear a lot of hope in the conversations which happen here.  

Thanks for reading.

Alice

This is an update of a post that appeared a month ago on Wellness Wordworks’ blog. 

1) It’s life and death for us. That’s a pretty good motivator to learn new things.

2) Free time:  Most Medical literature and medical education has been heavily influenced by the pharmacuetical industry. Most doctors have no formal exposure to mental health outcomes literature challenging the disease model of emotional suffering.  My favorite blogger, 1boringoldman.com does an excellent job of explaining this. Doctors can only find truth through their own off the clock efforts, and 80 hours a week of med school and residency training doesn’t leave much off the clock time. Many mental health professionals also work a lot more than 40 hours a week, so even after their training they don’t have time. In contrary, many of us survivors have been fired repeatedly due to the labels we have been given, so we are a bit more likely to have time available.

Street Art face painted on a concrete pipe cover in a diagonal alley in downtown Kansas City

3) Risk: Many people in recovery are often at the bottom of many pits before we start looking for new ideas. We have nothing to lose.  Yet for professionals, it’s practically career suicide for them to question whether people can completely recover by exiting the mental health system and coming off medications if meds aren’t helping. Maria Bradshaw pointed out in a comment on this blog: Many doctors support struggling parent privately, but few of them are willing to risk supporting us publicly.

4) Public relations. Many people have never even heard that there might be another way to look at things, that we can improve mental health outcomes for practically free, practically overnight. We need to tell a story that we know how to help people recover, that we have a better way to do things than using labels and medications first, for everyone and forever. If we want people to leave the APA’s storytelling and tell ours, it has to be palatable. Linda Andre wrote an excellent book called, Doctors of Deception that outlined how a masterfully crafted public relations campaign has been able to show ECT as safe and effective when it’s neither.

5) Emotional toll: It’s tough to read that you’ve been harming people you wanted to help. Many more people in recovery know the true story on mental health outcomes because it’s a good news story to us, so it’s much easier to read and keep reading on our free time. It tells us we can be free again. It takes a lot of digging to come a place of intellectual honesty about deciding what is true. I read about 150 research articles, 15 books, and went to two conferences before I was sure that Whitaker was right. This is especially hard to follow through on when it means you have been hurting people your whole career. If survivors like me keep throwing up things like my 7 ECT’s, loss of grad school, loss of a chance to have kids, and loss of 10 years of my career in their face, they aren’t willing to pay that price.

An AUFL tag in a brick courtyard in the West Bottoms in Kansas City, MO. Who have you decided is "Awful"?

6) An honorable way out: People might need a way out without admitting they have been wrong. Maybe we can figure out some way to show that life situations do intead cause our chemical changes and not just some random genetic or physical defect. This scientific explanation could satisfy the disease model advocates – simply explaining how much of our distress is due to trauma.

7) Future career plans: Many professionals don’t realize there’s a booming career in helping people get off meds or publishing medical literature about this practice.

8) The wrath of peers:  Truamatized people hurt other people. This does not make hurting people right and honorable and just and excusable. Or productive. When we speak publicly in ways that scare off professionals, we get labeled with their N-word, which is the A-word in our field: antipsychiatrist. Yes, an antipsychiatrist is pretty much anyone saying anything they don’t want to hear. But, it’s also anyone who talks with emotion and anger and hurt. We need to figure out other ways to share our pain besides personal attacks on people who may or may not have caused it. This is very difficult, and I cannot always do it. Instead, I feel great respect for the advocates who snuck into the APA convention to present Max Fink with a platter of brains for his work promoting ECT.

9) Ego: To listen to survivors, you have to admit that our experience has meaning. This is contrary to the entire disease model paradigm, which says that our behavior is irrational, and not a normal response to our life situations.

10) Fear of other professionals: psychiatrists are already stigmatized compared to other medical specialties, and probably thus less likely to be able to admit they are wrong.

Related Item:
Anti-Authoritarians and Schizophrenia: Do Rebels Who Defy Treatment Do Better?

Health disparities between the seriously persistent mentally ill (SPMI) population and general population exist which are alarming (MHA, 2008).  A report issued by the National Association of State Mental Health Program Directors (NASMHPD, 2006) stated that the rates of morbidity and mortality among people living with a chronic, episodic serious persistent mental illness are increasing (MHAT, 2008).  Individuals living with an SPMI are dying, on average, 25 years earlier than a person not experiencing SPMI (Elias, 2007).  While largely preventable, physical comorbidities (e.g., Respiratory disease, CDV, Diabetes), are deemed a side-effect of using long-term psychotropic medication prescription.

The National Association of State Mental Health Program Directors (NASMHPD) issued a position paper in 1989 recognizing that mental health consumers have a unique contribution to make to the improvement of the quality of mental health services in many arenas of the service delivery system. NASMHPD recommended utilizing consumers to assist with program development, policy formation, program evaluation, quality assurance, system designs, education of mental health service providers, and the provision of direct services (as employees of the provider system).

Within the context of a peer driven workforce, NASMHPD stated that consumers should be included in meaningful numbers in all of these activities. In order to maximize their potential contributions, their involvement should be supported in ways that promote dignity, respect, acceptance, integration, and choice. Support provided should include whatever financial, educational, or social assistance is required to enable their participation.  The terminology has changed to developing peer leaders and providing peer-to-peer support and treatment.  (NASMHPD, 1989)  In July of 2003 the President’s New Freedom Commission Report on Mental Health stated that mental health care should be consumer and family driven.

Consumers working as peer service providers help expand the range and availability of services and support which professionals offer. Consumer providers also bring different attitudes, motivations and insights to the treatment encounter and overall continuum of care.  Consumers are trained and hired as mental health peer whole health coaches to join a fostering human service workforce.  Peers are trained to share their own personal experiences of recovery from mental illness and open doors that otherwise would remain closed due to the stigma and shame associated with mental illnesses.  Integrating them into traditional behavioral health programs may result in professionals experiencing firsthand the valuable contributions peers have to offer.

Well-trained peers can be a valued and important component of a treatment team.  Peers create an environment that encourages and supports healthy futures and even helps individuals in the middle of mental health crises believe that they can and will experience a healthy future.  Creating healthy futures is critical for everyone and adults diagnosed with a serious mental illness should not be overlooked.  This provides an incredible economic opportunity for disadvantaged individuals.

A peer workforce that is trained, work-ready and skilled not only effectively changes life for the peers employed but for other potential Peer Whole Health Coaches and for the providers and provider agencies they work in.  Peer Whole Health Coaches develop skills and abilities in teaching life skills including: financial literacy, housing assistance, job training, and nutritional assistance.  Working helps these individuals overcome their disability and reach and maintain recovery by providing income and motivation.  The act of giving back to the community has additional long term and lasting rewards that provide access to the basics:  food, clothing, shelter, medical care, and a social support network.  The peer workforce coaches people about accessing health care, disease prevention, health promotion initiatives, and health literacy.

Peer specialists are an untapped workforce who create an atmosphere of hope and acceptance often times working side by side with medical professionals.  Peer Whole Health Coaches provide evidence and support, demonstrating that recovery is possible. Integrating peer specialists into the workforce can and does reduce the stigma of mental illness. Peer Whole Health Coaches often completely change clinical staffs’ perceptions of their clients because they see them as people first, rather than exclusively as a person with a mental health diagnosis.

Stamping out stigma, one person at a time, occurs when peer specialists are respected members any “treatment” team. The Substance Abuse and Mental Health Services Agency (SAMHSA) hallmark and innovative 10×10 Wellness Campaign was established in 2010.  The 10×10 Wellness Campaign established the  importance of improving the eight  dimensions of a person’s life (Swarbrick 2006) with a goal to increase life expectancy for persons with serious persistent mental illness  by 10 years over the next 10 years to 2020.  Currently, where I live in the State of Texas, mental health consumers living in community mental health programs are dying on average at the young age of 52 (SAMHSA, 2011).  The 10×10 can aggressively work to increase individuals’ lifespan by ten years to age 62 years of age.

According to UMDNJ and CSP-NJ’s Dr. Margaret (Peggy) Swarbrick (2006), eight dimensions make up a personal’s life.  The dimensions are social, physical, emotional, spiritual, occupational, intellectual, environmental and financial.  The social includes the development of a sense of connection and a well-developed support system.  The physical realm recognizes the need for physical activity, diet, nutrition, and sleep while discouraging the use of tobacco, drugs, and excessive alcohol consumption.  The emotional world includes developing skills and strategies to cope effectively with stress, challenges, and conflict.  The spiritual world includes searching for meaning and purpose in human existence in one’s life.  The occupational links the individual into deriving personal satisfaction and enrichment from one’s work.  The intellectual recognizes that there are creative abilities and the need to find ways to expand knowledge and skills.  The environmental is fostering good health by occupying a pleasant, stimulating environment that support well-being.  The financial domain includes feeling satisfied with a current fiscal climate and having a foreseeable positive future financial situation.

SAMHSA envisions a future in which people living with mental health issues pursue optimal physical and behavioral health, happiness, and recovery (SAMHSA 10×10, 2010) in their communities through integrated services, supports, and resources.  Earlier morbidity and mortality rates of individuals living with a serious, persistent mental illness urgently requires attention and programs which address largely chronic illnesses (e.g., cardiovascular disease, respiratory diseases).  Health disparities in the SPMI population is widespread. Whole health and wellness is an incorporation of mental, emotional, physical, occupational, intellectual, and spiritual areas of living (SAMHSA 10×10, 2010) which affects quality of life (Dunn, H.L., 1997). For the SPMI population, physical and behavioral whole health and an integrated wellness program(s) is directly related to the quality and longevity of life.

The Medical Directors Council (2010) of the National Association of State Mental Health Program Directors overall health findings support the SAMHSA 10×10 Wellness initiative as physical and behavioral educational interventions are essential for individuals living with an SPMI and for healthy living.  Mental health recovery includes wellness.  Recovery is a personal process in which an individual gains insight into his or her psychiatric disabilities and chooses to utilize natural supports, self-help strategies, and community resources for ‘personal liberation and wellness’ (Curtis, 2000, p. 25).  Recovery refers to the process in which people are able to live, work, learn, and participate fully integrated within their communities as opposed to living within a silo, or living isolated away and from supports.

Particular nationwide consumer provided services such as the Peer Whole Health Coach Project working jointly with the San Antonio Elder Care (SAEC) is a peer pilot project funded through OptumHealth as well as the outstanding City of New York and the New York Association of Psychiatric Rehabilitation Association (NYAPRS) OptumHealth Chronic Illness Demonstration Project (CIDP) Health Home.  Peers work as subject matter experts on the mind, body and spirit connection through actively engaging their matched consumer with whole health and wellness solutions (e.g., nutrition, exercise).

Larry Fricks, CEO and Director of Training at Appalachian Consulting Group, is the national innovator who introduced the Whole Health Training Module into the Depression & Bipolar Support Alliance’s national Certified Peer Specialist certification training.  This is one example of how COSP’s can offer the Peer Whole Health Coach Project at SAEC.  Fricks has partnered in his vision to provide a direct 1:1 peer to peer service focused on providing an integrated whole health model of wellness (Appalachian Consulting, 2011; DBSA, 2011).

The National Association of State Mental Health Program Directors  (NASHMPD) issued a position paper in 1989 recognizing that mental health consumers have a unique contribution to make to the improvement of the quality of mental health services in many areas of the service delivery system.  NASMHPD recommended utilizing consumers to assist with program development, education of mental health service providers, and the provision of direct services (as employees of the mental health provider system).

Currently, the model used for a peer workforce utilizing a Medicaid reimbursable funding mechanism with local mental health authorities, state hospitals and COSP’s demand collaborative efforts publically/privately.  National managed care organizations throughout the U.S. currently offer triage treatment units for a peer to perform psychosocial rehabilitation services.  Additional services and areas of subject matter expertise through a peer can be provided such as:

• Physical fitness wellness action plans.
• Wellness Recovery Action Plan (WRAP) ® Wellness Plans with Daily Maintenance Plan.
• Assume the role of being a WRAP PAL ® with matched mentorship provided.
• Perform whole health screenings.
• Offer information & referral services.
• Financial literacy training.
• Housing assistance and referral services.
• Job training.
• Nutritional coaching.
• Life skills training.
• Enhancing sleep hygiene.
• Personal life change agency.
• Community integration.
• Educational rehabilitation counseling and referral services.
• Vocational rehabilitation counseling and referral services.
• Trauma informed care resiliency skill building.
• Treatment team capable.

 I support a national peer certification and peer registry to be built by peers, consumer/survivor/ex-patients (c/s/x), Certified Peer Specialists (CPS), advocates, MH/SA stakeholders, our leadership and other interested individuals.  A state by state Medicaid reimbursable peer workforce is often folded into the state mental health and/or public health social service system.  Imagine a peer workforce managed and operated via a cooperative c/s/x, peer, CPS driven and c/s/x, peer and CPS led organization?  To name a few, a national peer workforce would invigorate cause for action to implement public/private MH/SA CPS specializing in, and but not be limited to:

• Psychosocial rehabilitation, recovery and integration.
• Be hope based.
• Whole health, wellness and resiliency.
• Be trauma informed care recovery and resiliency based.
• Substance abuse/Dual Diagnosis.
• Housing.
• Information referral & resource providers.
• State and federal disability benefits service provision.
• Independent living.
•  Veteran Americans.

A national peer certification is supported broadly by national leadership, c/s/x, CPS, peers, advocates, and other MH/SA stakeholder individuals and organizations that are publically and privately funded.  I welcome an invitation to the 2012 Pillars of Peer Support in order to participate, offer programmatic options and support the peer, CPS, c/s/x voice.

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If we examine the term ‘psychotherapy’ we will see that it literally means the ‘healing of the soul’. Much of emotional distress is actually a spiritual problem, where an individual has lost meaning and hope. In today’s society, we have lost sight of spiritual values and many have in turn decided to turn to the religion of bio-psychiatry.

to be more effective than the current biopsychiatric methods as evidenced by a study by Mosher where he took schizophrenic adults who were on either very low doses or no medication, and offered them a ‘safe place’ with non professional staff residing with them and sharing in their daily experiences. A 2 year follow up of these patients noted higher levels of success and progress than their counterparts who were subjected to neuroleptics and psychiatric hospitalization (Mosher, 1996, pg. 53). The model known as the Soteria project was based on principles of growth, development, and learning. All facets of the distressed person’s experience were treated by the staff as ‘real’ (Mosher, 1996, pg. 49). Limits were set and mutual agreements made with the patients if they presented as a danger to themselves or others. Such a model could be adapted to use with adolescents, offering them the need for compassion, empathy, and finding that ‘safe’ place, restoring within themselves a feeling of worth and dignity that will lead to their ability to address the issues of their distress and traverse towards recovery. It should be understood that recovery means being able to overcome distress, not being a lifelong consumer of toxic drugs.

What can we do to recreate a mental health system which is humane? First, we must stop looking through the eyes of a medical model, where we see people as broken and disordered and attempts are made to attributing their behaviors and emotions solely to a malfunctioning brain. There is no evidence supporting the psychopathology of a number of disorders. The linkage between the pharmaceutical companies and psychiatry needs to be evaluated as well as the information that is disseminated via the research and materials provided by pharmaceutical company money. The goal should be to examine the underlying factors of a person’s behavior, looking at the person with dignity and respect, and seeing the person as one in conflict rather than a person who is disordered. Such stigmatization remains indefinitely, and labels can often become a self fulfilling prophecy and will follow for years to come and shape the way that one views themselves and also the way others view them.

We cannot look to solely the most cost effective solution when people’s lives are at stake. Indeed, providing a prescription may control aspects of behavior and be thought to have a ‘therapeutic effect’ but never gets to the root cause. Second, the realm of psychotherapy must return to its original roots. The word psychotherapy literally means the healing of the soul. We must return the soul to therapy, encouraging therapists to instill within themselves the principles of compassion and empathy that are crucial for any therapeutic relationship to blossom forth.

Therapists need to be compassionate and creative, and willing to give additional time and effort to see that a person’s needs are met and to also provide community linkages and ongoing support within their environment and to encourage the least restrictive setting. The coercion into forced ‘treatments’ needs to be eliminated. Third, our society must change in its attitudes. We are a society where we try to find our answers to ailments within a simple pill. We are a society that has unfortunately lost sight of the welfare of those vulnerable and in need. We are a society where we are prosperous, yet greed often blinds us. Somewhere along the line we have failed our fellow human beings.

We need to rely less on psychiatry and its devices to solve our problems and more on what we can do within ourselves- to take a holistic approach, to understand the person as a whole person- physical, emotional, and spiritual, and to examine in each of these areas where there may be difficulties that can be alleviated. We need to rely less on others dictating the course of our own lives and develop workable plans within our own family structure. Nothing will ever be perfect, but even in the most serious disturbances, love and compassion can heal much.

“We’re producing biased medical information in a system that makes it impossible to know what the real story is,” Light said. As a result, “most drugs are approved without clear evidence of clinical safety or effectiveness.”

As an example, Light pointed to the story of the SSRI antidepressants (which I chronicled in Side Effects). A number of recent studies, which combined unpublished data with the published data, show that these second-generation antidepressants are not very effective in treating most depression — see more here. “After 25 years, we get a fairly clear picture of efficacy of SSRIs,” he said. “But why do we have to wait 25 years?”

Not only are many patients harmed by this system — in the case of SSRIs like Prozac, Zoloft, Paxil and Celexa, many children and adults killed themselves because the drug companies hid a dangerous side effect of these drugs: they caused an increased risk of suicidal thoughts and behaviors in some people.  In addition, most of the drugs that are approved by the FDA and other regulatory agencies are minor variations on existing drugs and not the kind of breakthroughs that the public expects from an industry that is routinely given tax breaks, years of patent exclusivity and other privileges.

Light cited a study by French researchers, who analyzed new drug products from 2002 to 2011 and found that only 7.6 percent of the new drugs approved in the last decade were either significant clinical advances or had some therapeutic benefits. The vast majority of new drugs in the past decade had either minimum value, no added value or were actually worse — in terms of efficacy — than existing drugs.

“This isn’t really what the public wants,” Light said. This research shows that “most drug company R&D is devoted to filling the pipeline with minor variations because they’re easier to develop, cheaper and they can command high prices.”

These minor variations (what I and others call me-too drugs) are then marketed heavily to doctors, who, as Light says, seem “surprisingly willing to prescribe them.”  Indeed, Light has found that 80 percent of drug companies’ marketing budget goes to promote the me-too drugs and only 20 percent is spent to promote therapeutically superior drugs.

“I call it the inverse benefit law,” Light said. “The more widely the drugs are marketed, the more diluted their benefits are, but the more widespread the risk of harm.”

Light urged a number of reforms to address this systematic problem:

• Have Congress pass a law requiring public funding of clinical trials so they are not controlled by drug companies that have a vested interest in ensuring positive outcomes — I’ve blogged about this here. According to Light, there is increasing talk in Europe of publicly funding clinical trials. The Netherlands has already announced plans of having independent researchers test every drug against an existing drug (instead of placebo) to ensure that regulators approve drugs that are truly effective, not just better than a sugar pill.
• Delink drug prices from the current system of R&D. A recently introduced bill by Sen. Bernard Sanders (D-Vermont) would reward innovators who come up with a superior drug with a large cash prize — say, $2 to 3 billion paid out over a decade. With such rewards, the drug companies wouldn’t get years of patent exclusivity and generic price competition could kick in almost immediately. That would eliminate what Light calls “extortionist prices” for most new drugs.

• Make it illegal to prescribe drugs for unapproved or off-label uses. Physicians have long been allowed to prescribe any drug for any use, but Light questions why this is permitted, since so many patients are harmed by drugs that have not been tested for their particular condition or demographic.

Light acknowledged that such reforms are a tall order because the Republican-controlled Congress doesn’t seem to be particularly interested in biting the hand that feeds it (the pharmaceutical industry is one of top special interests when it comes to Congressional campaign contributions and lobbying — see here). And it’s not just Republicans. The Democratic-controlled legislature in Massachusetts is also busy sucking up to the deep-pocketed drug and medical device industry. As Pharmalot reported today, the Massachusetts House is trying yet again to overturn the state’s landmark ban on gifts to doctors.

All of this is one more reason why this election year is so important. Consumers who are concerned about the way unsafe and inadequately tested drugs routinely get approved by the FDA should vote out any politician who is taking loads of money from the drug and medical device industry and rally for campaign reform so we can actually start improving the system. A tall order, yes. Impossible, no.

It was 1936 and Jung was staying at Perry’s house while on a trip to America for an honor given him at Harvard. Perry had picked him up at the train station and was amazed that the reserved, Germanic style scholar/physician he had expected to meet was instead a loud, boisterous and earthy, very physically powerful man.

In this vein, the evening before John’s dream, Jung animatedly had talked non-stop about his archetypal theories of dreams and the collective unconscious and of mysterious and exotic mythic themes over dinner at the genteel home of John’s patrician father, the presiding Anglican Bishop of the U.S.. While recently touring Europe, Bishop Perry had visited Jung in Zurich for guidance about his dreamer son John!

John told me that of course, Jung’s presence that night in 1936 sparked John’s psyche to have the first of countless dreams that wouldn’t have happened without their fateful encounter. That encounter transformed Perry’s life and set his vocation that resulted in him becoming the only Jungian who has carried Jung’s work on madness forward. Jung wrote the forward to Perry’s 1953 classic- “The Self In Psychotic Process.” Perry’s last book- “Trials Of the Visionary Mind,’ was published in 1998, the year of his death.

This blog is a resumption of several posts here on my personal narrative that began with one called “Initiatory Madness.” My un-medicated, untreated period of madness 45 years ago was valued and understood in large part by me fortuitously finding and then devouring much of Jung’s collected works, soon after I had become less mad. But I had never felt safe talking with another person about my madness for a dozen years until I met Perry in 1981 and he became my analyst for 4 years. I faithfully carried my dreams on 3 by 5 cards every week across the bay bridge to meet with him in San Francisco. He only charged me $35 an hour.

I met him while I was working on the I-Ward medication free madness sanctuary. When my analysis ended, we became friends and I did my doctoral research on John’s Diabasis House medication free madness sanctuary. Please click here for the full follow-up study that is available in PDF. “Alternative Treatment of Psychosis: A Qualitative Study Of Jungian Medication Free Treatment At Diabasis.”

John was on my dissertation committee and also was a clinical supervisor in my clinical training program at the California Institute of Integral Studies..

Not being shy, I also asked John to be my mentor, hoping it would be something like what John had told me Jung had done for him in their many hours alone in free wheeling discussions. Jung had recommended that happen on a regular basis in the years while John was in his training in Zurich after WW2. Jung also urged John to be in analysis with with Jung’s closest confidant,Toni Wolff and also at the same time see a male analyst named C.A. Meier. It was a dual analysis that was unprecedented.

So, for many years up to his death in 1998 I made frequent visits to John’s home for dinner and we discussed all manner of things, including how to get a Diabasis or I-Ward medication free madness sanctuary opened in the S.F. bay area again.

One evening something happened there that is the main impetus of me writing this blog on Jung, Dionysus and Diabasis. What follows may seem strange or esoteric for some readers of this Mad In America site, but please allow that the history of psychiatry and psychology and madness especially, stretches back into the most distant past when mythic energies and chthonic deities were felt presences in the lives of our ancestors.

In my personal life informed by my season of madness and by my active pursuit of them, they still are.

So here is the next unusual chapter in a circuitous story of my inner and outer seeking as a Neo-Jungian therapist who has specialized in serving those in madness for the past 35 years.

After Jung’s dramatic initiatory period of madness triggered by his break with Freud, his Dionysian sexual boundary violations of a psychotic patient that is very clearly portrayed in the film- “A Dangerous Method,” and his deep necessity to seek his own inner vocation, Jung came to insist that his Jungian analysts in training like John Perry become doctors first- become men of science so they would garner the respectability of the social setting of his time.

Direct encounters with chthonic archetypes and deities via hypnosis, sacred shamanic trance, evocative ritual or mind-expanding drugs never were part of the advertised Jungian or Neo-Jungian process of inner exploration and healing. Analysts were actually expelled from the Los Angeles Jung Institute for experimenting with psychedelics according to John Perry.

The leading Neo-Jungian, James Hillman danced up close to the heretical edge, especially with his focus on Dionysus–but backed away. Because for Hillman the gods always remain ‘as if’–they may be active in us metaphorically and psychologically as archetypes he basically says, but you will never read about Hillman doing or recommending ritual trance or any other evocative ritual to explicitly call the gods forth in the timeless tradition of our polytheistic ancestors.
Not even in his book- ‘The Myth Of Analysis’- which has a painting of Dionysus on the cover does Hillman cross the Jungian party line.

My intention in pursuing the heretical, deity evoking daily rituals I started doing 25 years ago and also via a transpersonal dream process that used trance as incubation for a lucid dream process that was guided by a medial and muse-like, dream evoking hypnotist- was to not only cross, but erase the Jungian prohibition on practicing cultic ritual. I wanted to encounter autonomous deities as is our birthright and is still a common practice in some parts of the world and that I had felt the presence of in my madness.

The world that had opened out before me during my madness was uncannily described by Walter Otto in- “Dionysus Myth And Cult,” that I read almost 30 years ago and has been like my sacred text ever since. In it, Otto states that-

“Dionysus is the god who is mad. The visage of every true god is the visage of a world. There can be a god who is mad only if there is a mad world which reveals itself through him. We know him as the wild spirit of antithesis and paradox, of immediate presence and complete remoteness, of bliss and horror, of infinite vitality and the cruelest destruction. The primal mystery is itself mad- death lives cheek by jowl with life. The elemental depths gape open and out of them a monstrous creature raises it’s head before which all the limits that the normal day have set must disappear. There man stands on the threshold of madness- in fact, he is already part of it even if his wildness which wishes to pass on into destructiveness still remains mercifully hidden. But the God himself is not merely touched and seized by the ghostly spirit of the abyss. He, himself is the monstrous creature which lives in the depths. From it’s mask it looks out at man and sends him reeling with the ambiguity of nearness and remoteness, of life and death in one. It’s divine intelligence holds the contradictions together. For it is the spirit of excitation and wildness, and everything alive, which seethes and glows, resolves the schism between itself and it’s opposite and has already absorbed this spirit in it’s desire. Thus all earthly powers are united in the god: the the generating, nourishing, intoxicating rapture; the life giving inexhaustibly; and the tearing pain, the deathly pallor, the speechless night of having been. He is the mad ecstasy which hovers over every conception and birth and whose wildness is always ready to move on to destruction and death.”

I felt the presence of this reality when I was mad and do this second as I am typing.

Otto also lists the ancient epithets of Dionysus who was also called by his initiates to be incarnate in the form of a leopard, bull, or snake. He is called -

“The nurturer, the delight of mortals. the loosener, the god of many joys, the liberator, the deliverer and healer, the bestower of riches, the redeemer, the benefactor.”

But- “No single Greek god even approaches Dionysus in the horror of his epithets. He is called the render of men, the eater of raw flesh..we hear not only of human sacrifice in his cult but also the ghastly ritual where a man is torn to pieces..as a best of prey who eats flesh raw..the man eating sphinx reminds us vividly of Dionysus, etc..”

It was one evening when at John’s house for dinner that I shared something so disquieting that it made his jaw drop. As a serious writer and historian of ancient myth and culture, Perry acknowledged that he and all the Jungians he had ever known(including Jung) had unconsciously taken part in a huge cover-up which I had just exposed.

For several years preceding that evening I had been doing magical rituals to call forth Dionysus. I had read a great deal on the cultic history and rites of Dionysus and had introduced that material into the trance sessions I described above, which as usual only intensified my dreams in that inner realm. Perry had done a remarkable presentation at U.C. Berkeley on Dionysus with Joseph Campbell and Mickey Hart of The Grateful Dead. Perry was an expert on Dionysus.

Most amazingly though is that Perry had recommended Otto’s book on Dionysus to me! He had read every word I just quoted above from that book about Dionysus being the maneater.

Around this time I remember too that a good friend who had trained at the Jung Institute in Zurich and was very involved at the San Francisco Institute invited me to an afternoon get together with her at the home of one of the prominent, senior analysts for a group discussion about Dionysus. I responded ruefully–”Discuss him eh, how do you think they’d like it I wanted to instead do a ritual on the spot with them to call him forth into our midst?” She, knowing me well said–”Okay, so you obviously aren’t coming with me–because you know your bull in the china shop nature can’t stand our timid, in your mind attempts to have a civilized discussion about your beloved Dionysus!”

It was well documented that in addition to Dionysus being identified by his appellation ‘the liberator’–and as the well known animal embodiments of bull, snake and leopard, Dionysus was frequently referred to by the ancient historians in their descriptions of his early rites throughout Asia Minor and the Mediterranean as–’The Maneater.’ Human sacrifice and ritual cannibalism were practiced in his rites. His leopard epiphany spoke to his bloodthirsty nature as one aspect of his complex being which is also portrayed in his initiatory rites in the form of a large free standing phallos.

Hillman’s writings as well as almost every Jungian writing on Jung refers to Jung’s seminal first numinous childhood dream that informed Jung’s pioneering work and life. In his autobiography–’Memories, Dreams and Reflections’ published after his death, Jung reveals the central importance of his early first dream and admits his life long pre-occupation with it.

In the childhood dream Jung, alone at night descends stone steps and enters an underground throne room in an open grassy field through a shimmering heavy curtain of green and gold. At the end of the darkened room he sees an awesome, unknown form on a throne, illumined by a light from within. In terror and awe he realizes the shape is a huge upright living, fleshy phallos with the opening on top like an eye. Suddenly his mother is there at Jung’s side and cries out to the boy in contempt and dire warning–’Yes,– just look at him, the maneater!’ Jung woke up terrified.

Jung, who was extremely well versed in the history of antiquity never acknowledged that the phallic, man eater deity of his seminal dream was obviously a vision of Dionysus.

Throughout his life, Jung took pains to describe the tragic fate of Nietzsche as a cautionary tale of a modern worshiper of Dionysus driven mad by excess, whose brilliant philosophy of unbridled amoral Dionysian wildness and liberation was seized upon and perverted by the Nazi’s.
Jung often said in criticism that Psychiatry had turned the gods into diseases. I always uncomfortably felt that for some reason Jung and his followers had in turn reduced the gods into psychological complexes, into archetypes.

Then one day I suddenly realized that my long held frustration with the Jungian ‘as if’ approach to the gods that de-valued and reduced them in this way was brought about because Jung must have deeply feared going the way of Nietzsche. I saw that Jung had defensively put up a wall of impenetrable obfuscation and denial about his life-informing seminal first dream about the obvious phallic incarnation of Dionysus, the maneater. I also realized that because of Jung’s own almost demi-god stature among his followers, none of them, including John Perry had ever dared to let that obvious connection into their consciousness either.

We must remember that Jung’s dream wasn’t known to his followers until the early 1960′s. It was a secret not revealed until the release of his posthumous autobiography. By then the huge edifice of his decades long monumental work and legacy around the world must have served to create incredible cognitive dissonance for his followers when they first read of the maneater dream.

They were faced with three alternatives. If they allowed the realization that Jung had incredibly repressed the maneater, phallic Dionysus truth of the dream, they would be faced with the awful knowledge that their revered leader had massive feet of clay–that he who was the unrivaled seer in plumbing the depths of the unconscious for meaning had been unable to see that the ‘big dream’ that set him on his genius path was beyond his understanding.

Or, perhaps even less acceptable to Jung’s followers when confronted with the obvious Dionysus epiphany was to believe that the mature Jung knew full well that the phallic maneater of his dream was Dionysus, but chose, out of fear of ending up scorned like Nietzsche, to dishonestly hide that truth from the world.

It seems obvious that when faced with the choice of allowing a realization that Jung either was singularly psychologically blind to the identity of his own benefactor Dionysus, or a realization that Jung deceptively hid the identity of the phallic maneater Dionysus– that Jung’s followers were in so much cognitive dissonance, were in such a bind that they unconsciously chose the third alternative. They went into a collective trance. Like the throng in the Emperor’s New Clothes fairy tale, they couldn’t see the reality before their very eyes.

Orwell famously affirmed this psychological axiom –’To see what is in front of one’s nose needs a constant struggle.’

That’s why Perry’s patrician jaw dropped and I saw him for the first time at a loss for words when I spoke my Jungian blasphemy about the big secret hidden in plain sight. When the defense of denial collapses on a secret that big it is a dramatic thing to witness. Perry became almost giddy–he kept repeating–”Of course Michael, yes, you are right, you are right–I never saw it, none of us did–oh, you must publish this, must publish this!” And so I am right now.

I can hear the obvious question being raised now- “But so what if Jung and his followers didn’t connect the dots between his first big dream and Dionysus–what difference does it make?”

After his break with Freud, Jung describes a long period of psychological disturbance and visionary experience that became the raw material for all of his later work. At the height of this period He experienced a room full of disembodied spirits of the dead descend on him crying out- “We have been to Jerusalem where we found not what we sought!”

Although Jung’s contribution to human knowledge is immeasurable, it can also be said that those who went to Zurich actually or symbolically ‘found not’ what they sought because Jung so disguised his Dionysian soul in Christian clothing. Especially Jung’s loyal ‘maenads’–the women followers who served and adored Jung received a half measure of what they were so clearly drawn to–Jung’s irrepressible Dionysian energy and spirit. Perry told me that such a strong and earthy, uncanny and psychic Dionysian dimension was present in every personal encounter he had or witnessed others have with Jung. Jung was either an unconfessed or unconscious portal for the channeling of the presence of Dionysus.

Jungian writer Lopez-Pedraza, who also sadly missed identifying the maneater, Dionysus connection in Jung’s seminal dream in his- “Dionysus in Exile- The Repression Of The Body And Emotion”- asserts the importance of Dionysus to psychology as the singular deity who both brings and heals madness. A psychology of Dionysus should be at the center of our clinical practice he says. Sadly and ironically too, the title of Lopez-Pedraza’s book reflects the actual state of affairs in the Jungian community.

Dionysus is still largely in exile. To embrace Dionysus fully is to embrace the dark, cthonic, forever uncivilized mammalian energies of savagery, death and destruction that live alongside love and innocence at the heart of every process of transformation and renewal- via madness or otherwise. The poles of savagery and innocence can be reconciled while not banishing or losing either end of the emotional and transpersonal power spectrum that animates them. If we shun our inner beast we project it onto others in a shadowy dance of seeking inner purity instead of wholeness. We create other people as our enemies by demomizing them as being capable of immoral acts that we tell ourselves we could never commit.

In our culture the most despised and shunned emotions are the dark and savage ones. I have found that they are the most common energies that can not be experienced and expressed for some people without them going into a metaphorical process of madness. I can’t imagine someone needing to become mad who has already really become adept at handling their subjective experiences of rage, lust, fear and grief- that is, being able to feel them, name them, own them without shame guilt or fear- and then be able to express them clearly- not act them out.

Psychiatry mainly serves to subdue those powerful Dionysian emotions as King Pentheus did in Euripides’ – “The Bacchae,” when he announced to Dionysus that he was going- “To lock you in an iron cage.” Dionysus always lives outside the walls of the city state. He calls his followers outside to be free again of the constraints of that civilized social structure. It went very badly for the King when Dionysus hypnotized him and led him outside the city gates.

I imagine Jung’s stunning revelation in his autobiography of his own “confrontation with the unconscious,” which was in fact an initiatory madness, visionary ordeal also contributed a huge impediment to his followers being able to consciously connect Jung with the god of madness, Dionysus. Even with the recent revealing of Jungs’s “Red Book” chronicle of his ordeal, many Jungians insist he wasn’t mad!

Jung’s violation of his mad patient also is a huge factor in his shunning Dionysus because Jung almost lost everything over it. He should have lost his license to practice medicine. I believe after that sexual abuse of his mad patient, Jung greatly feared for the rest of his life being possessed by the same autonomous wild force that he believed destroyed Nietzsche, that could cause him to break with all normative behavior because he had been out of control.

Jung ended up being a world historical revolutionary though, a true mana figure because he pointed to and re-opened the doors to the depths of the collective unconscious and all the mythic powers waiting there, not just limiting possible exploration to Freud’s Oedipus myth.

Those ancient doors had been increasingly sealed shut by patriarchal thinkers who relegated the timeless polytheistic deities to mere fleeting shadows starting thousands of years ago. Through the efforts of men like Plato and culminating with the Judaeo-Christian-Islamic followers of a perceived universal monotheistic deity–countless deities of old were banished, and in their place was devised a single, invisible, imageless, ‘idol’-free omnipresent deity whose inherant role was to judge, shame and punish anyone who dared not conform to the new monotheistic myth form.

Jung often said he believed he would have been burned at the stake for his heresy against monotheistic Christianity if he had lived in the middle ages.

No wonder that when Nietzche loudly proclaimed the invisible monotheistic god dead and resurrected the pagan Dionysus to replace him, that it became such an un-paralleled seismic event in Europe. In that cultural context Jung’s great gift is that he did legitimize a spiritual, psychological return to the polytheistic inner universe of the collective unconscious even though he clearly didn’t and couldn’t go as far as Nietzche and honor the god Dionysus who came to Jung in his haunting subterranean childhood dream of the maneater.

So, I have always loved this quote from Jung at his best–’These inner motives spring from a deep source that is not made by consciousness and is not under it’s control. In the mythology of earlier times these forces were called mana, or spirits, demons, or gods. They are as active now as they ever were.–The one thing we refuse to admit is that we are dependent on ‘powers’ that are beyond our control.’

But as Jung was always quick to point out- just because a culture has damned up the river of a certain deity, even made the dry river bed a paved freeway, the underground aquafer of numinous power is always still present, just waiting to beak through into our midst again. All it takes is a human voice to call it forth.

One night in a dream, no doubt stimulated by one of my muse’s catalyzing trances, I heard her voice tell me–”Pre-Dionysus, Dionysus, Post–Dionysus.” I took that to mean the ‘pre’ phase was the wildest pre-agricultural, pre-city state phase of Dionysus. The ‘Dionysus’ phase was when he was given that name during his always disruptive appearance from outside the societal walls of the Greeks intruding into their midst as the God ‘who comes’- who appears from atop the still wild mountains or from beneath the sea suddenly to overturn the social order of the city state.

The post-Dionysus phase I took to mean now, our present cusp of history, our own post-modern phase when Dionysus, in up-dated form along with an emerging new Goddess become manifest around and in us to usher in the next culture/zeitgeist transforming myth form.

In 1997 after one of the trances I had this hypnogogic, lucid semi-dream like vision unfold that night while alone. Obviously I was attempting to integrate the powerful polarities that were stirring in my psyche that had been constellated in my madness so many years before when I lived in the mad world of Dionysus that Otto describes.

“I shot the cougar on the open ice with the scoped rifle and drug it up a wooded gully quickly and fed on it there or a week.–Eating the hot raw pungent liver–but first it’s red, shining heart. And from time to time as I raised my head from that dark steaming feast my eyes I know were languid and burning at once. When I finally rose standing and looked around a click or crack sounded in my head like ice shattering across the frozen lake. And my body convulsed as if a riveted iron suit had exploded off me and halls and corridors in my brain long walled off cracked open and exposed new rivers of life crashing freely at last.

And later that winter I caught up with a man who had raided my camp and tent. He turned fearlessly as I approached until our eyes met. Then he ran but I fell on him at first with my big knife but soon only held to his throat at first with my hands and then my jaws sought surer and surer purchase on his windpipe.

I drug him up a secluded wooden gully and fed on him there for days–and heard for the first time minute sounds around me and slipped in my dreams at night past the farms and cities and roads to a riverside shining. I stand in the river and a big eagle is on shore. It wades out and I let it hold me under like a baptism. When I surface it’s on shore and amazingly picks up a lingam shaped stone with it’s talons and tosses it to be caught in my right hand.

When I awake sometimes I try and think of the River’s name wondering if I’ve heard it somewhere in my dreams. When I try and remember the river’s name I always remember instead a part of the dream I can only remember when I try and remember the name. Suddenly I see myself in the dream on shore leaning over the reflective water and see my arms and chest at first and then just a cougar’s head. In the dream it feels so good to be both, I had become so tired, it was such a burden to always remember my name.”

Shortly after recording the above–this came to me the same night.

“A Young Maiden Walking.”

Back in the mountains

because it seems

I’ve tasted the flesh forbidden

until now–

I strangely bask and walk at times

with the gentle step and eyes

of the maiden released

by the deed she would most fear-

no one had told her or me

how my love would require

traveling forward

or back through time

to open the greenhouse door

for her to emerge now

this new spring and feel

her smile reach this sky

at the river of warm, innocent sunshine-

It flows from a safety provided

from an ever present power

living behind

the maneater’s eyes.

“Behind every image is an emotion, behind every emotion is an archetype, behind every archetype is a deity.” A ritual incantation that came to me in a solitary trance about 20 years ago.

Jungian’s are meticulous, as was Jung –and take pride in being able to identify which archetype or ‘as if’ deity is stirring in someone’s psyche or symbolic social situation or work of art because it’s incredibly valuable to name and understand which autonomous powers we mortals are always fatefully being possessed by.

After the war, Jung finally proclaimed in a missive entitled- “After the Catastrophe”- that it was in fact Wotan, not Dionysus that the Germans were being held sway by as they proclaimed their Nazi led superior race of ‘blond beasts’ to the world. Jung said he realized that the Germanic tribes had never really assimilated the Christian religion–that Hitler called forth a flood of ancient racial power that had always been waiting to re-fill the seemingly forgotten and dry river bed that was the domain of Odin/Wotan–the wild Berserker God of Viking antiquity.

But in reading many accounts of his patients clearly Dionysian dreams, Jung unfortunately always stops short of naming the deity manifesting himself in his patients psyche.

Because of Jung’s own aversion to his first seminal dream of the phallic maneater Dionysus and the feared disaster of sinking into the morass of madness and disrepute of Nietzche- plus the catastrophic effect of Nietzche’s writings on Dionysus being appropriated by the Nazis, we have been denied a clearer light shining on the deity Dionysus who expects our attention and could be an ally in understanding and healing madness.

While writing all this I remembered years ago hearing the Wagnerian opera Tannhauser. Nietzche was a one-time fervent disciple of Wagner. Tannhuser is about the hero who sojourns in Venusberg with the Golden Goddess Aphrodite before returning to the damnation of his countrymen for his unpardonable transgression. Venusberg is the realm of taboo beauty. The barren wasteland of Tannhauser’s sterile Protestant culture mirrors the atmosphere of Yeat’s ‘Second Coming’–and the ‘Wasteland’ in Elliot’s prophetic poem about our own post-modern world as we wait for the new myth form to renew it. In the opera, Aphrodite has been banished by the priests of the austere father, senex sky God to be forever hidden away from mortals in the depths of the earth.

She was un-reachable except to reckless seekers like Tannhauser who at the end of the morality tale finally repents of his sin against the Patriarchy–his sin of dwelling for a time in the realm of Aphrodite’s pagan beauty.

As a one-time official aspirant to the Christian priesthood on my way to Seminary, I was a follower of Jesus when I started exploring the archetypal inner feminine and Goddess.

In a dream about 25 years ago, there was a great throng of people gathered outside in a meadow in a scene out of the New Testament. I was standing a short distance away from the edge of the people. Suddenly, a rapturous cry went up from one person that was at once caught up by all in a huge chorus of exaltation–

“He is coming! He is coming! He is coming!”- they all joyfully cried- because we all suddenly sensed a huge presence of palpable spiritual energy coming from just over the hills bordering the meadow.

It was Jesus who was coming. Not for the first time–but finally coming again. The feeling I experienced was unspeakably awesome–it was unimaginable– numinous– because it was as if I was to really encounter a living deity! It makes me emotional and tremble even now as I write this.

As the people shouted more loudly of his coming, I remained strangely separate from them, feeling the same ecstatic emotion, but not crying out myself. Suddenly, the hills from which he would soon appear and arise up over–themselves began to rise up –grow into two large mounds the shape of two enormous upright curving breasts.

And then suddenly between them appeared the upright wooden cross of Christ. But something was wrong. It was withered and dessicated–shrunken, like it had been parched under the withering sun of a desert wasteland.

Then to our gathered shock and surprise on each hillside stood in profile a priestess with coal black hair cut straight across her brow in the custom of the Egyptians. Each priestess held aloft a large, shining golden ankh, the symbol of life. The iconic image was radiantly full of indelible beauty.

Then, as if enacting the unknowable third act of this unbelievable ritual drama, as if out of a cloud above his cross were stretched the gnarled and weathered hands of Jesus. In a voice of admonishion, grief and complete authority he demanded of us all gathered at his epiphany– “WHY—HAVE YOU MADE THIS ENGLISH CROSS SO USELESS?”

Then his powerful carpenter’s hands took the uprooted cross and broke and tore the dry and lifeless wood to pieces and crumbled it to dust.

I awoke so breathless and beside myself I feared for my mind–what was to become of me. I gradually calmed down and was filled with such a powerful sense of wonder and excitement that for some reason I remembered reading there was a Zendo in Berkeley that met for meditation at 6am. I dressed in a state of agitation and wonder at what I had just experienced. I had never had a dream that powerful. It felt like a visitation. I drove to Berkeley and went for the first time to this Zen group. The leader could sense I was in a very unusual state. I didn’t speak to anyone. When the meditation was over I silently left and drove home to get ready for work that day as a hospital therapist working with mad people without using any medication–a vocation I followed for 30 years in the footsteps of my mentor John Perry and my great loving friend Jesus who rescued me in my madness as a young man and his blood brother Dionysus. Pairing them I know is not acceptable to most people.

So, let me end my story unrepentant but paradoxically still very loved by Jesus with the dedication to “The White Goddess” by Robert Graves which has long been a touchstone of blessing for my own Dionysian transgressions and sojourns to the shores of Beauty, Love and Wild Freedom.

IN DEDICATION

All saints revile her, and all sober men
Ruled by the God Apollo’s golden mean–
In scorn of which I sailed to find her
In distant regions likeliest to hold her
Whom I desired above all things to know,
Sister of the mirage and echo.

It was a virtue not to stay,
To go my headstrong and heroic way
Seeking her out at the volcano’s head,
Among pack ice, or where the track had faded
Beyond the cavern of the seven sleepers:
Whose broad high brow was white as any leper’s
Whose eyes were blue, with rowan-berry lips,
With hair curled honey-colored to white hips.

Green sap of Spring in the young wood a-stir
Will celebrate the Mountain Mother,
And every song-bird shout awhile for her:
But I am gifted, even in November
Rawest of seasons, with so huge a sense
Of her nakedly worn magnificence
I forget cruelty and past betrayal,
Careless of where the next bright bolt may fall.

I came to his door referred by an old friend of his, my neurology mentor at Tulane. I knocked one afternoon and said, “Dr. Sam Trufant sent me.” These were the magic words. George Saslow smiled and opened his office door. I had found the guide I sought for the remainder of my training years.

Dr. Saslow was an amazing physician. When he was forced to retire at sixty-five by federal mandatory retirement laws, he went off and started a new department of psychiatry in Oregon where there had been none. When the people working on the Manhattan Project started having “stress issues” while developing the atomic bomb, George was the guy they called in to help sort things out. By the time we met, he was professor emeritus and active on the Psychiatric Security Review Board. He provided me an anchor from which to navigate the second half of my psychiatry training.

Sometimes I imagine that George would know what to do if he were still alive today. Then I remember what he thought about the changes that were happening, even back then, in the mid-eighties.

 I talked to him about the changes he and I saw; the replacement of psychiatry education with psychopharmacology training, the infiltration of “prescribing” as a substitute for medical care, the loss of public funding of the state medical school and hospital and subsequent privatization, the closure of state hospitals and the first waves of patients abandoned to live “under the bridge”.

“Things are not going to get any better,” he told me. Back then, I wondered if he might just be a crabby old man. But now, having lived the past 25 years since our regular meetings, I see that he was the voice of experience and history, a skeptical enquirer, a lifelong student of human behavior and a talented visionary. Or maybe I’m just a crabby old woman now.

I often wonder what he would think about it all today, what he would do about the condition of the practice of medicine. More than anything, I long for leadership and guidance. I keep looking around, but see no one who’s in the position to provide this. My colleagues are head-down, occupied in the trenches, bailing the ocean with their teaspoons. They are caught up shoveling pills at patients as fast as they can in an effort to stay ahead of the time choppers nipping at their professional livelihoods. The younger ones have no idea that things were ever any different. The older ones take their marbles and leave.

What would George do? Every day I wonder. Then I remind myself of a favorite saying of mine: “If you ever need a helping hand, there’s one on the end of each of your arms.”

Dr. Saslow was a cognitive and behavioral therapist by inclination, so by professional heredity, I am also one. He believed in the miracle of changing one’s life for the better, one behavior at a time. He understood the power of words to create the world.

So, I take out my laptop and write again.

I’ve been sending my email missives out to a slowly growing group of friends and professional colleagues since I left Portland last fall. I’ve sent travel logs, personal updates, thoughts and feelings and the occasional professional rant. I am certain there are email boxes that have a special spam filter with my name on it by now.

I have had professional rants for years, but usually just talking rants during the slow spells of crisis work and rants when I walk in the mornings with my quiet-natured husband. I’ve always been prone to doing research projects when I’m perplexed, all the way back to medical school. Whenever I’m bothered by the idea of this medical treatment, that nutritional hoax or this social condition, I bury myself in the books. I get excited when I do research. I tell anyone and everyone that will sit still for five minutes what I think this week. I would probably hate someone else for doing this.

Now I’ve been given a great gift, the gift of a wider audience. In the past week I’ve had more different people read me than I’ve ever had in my life. I’m exceedingly grateful for this opportunity. Now, when I sit down to think and write, I know that there are a few more people at the other end of my pipeline.

Even though I still feel lost and leaderless in an overwhelmingly broken medical system, I am reassured when I see that there are others who have noticed that all is not well in our first world paradise of high-profit, “evidence-based” pharmaceutical products.

This endless flood of overpriced pills is poisoning our patients, busting our healthcare budgets and killing the practice of medicine.

And, like George, I fear it’s not going to get better soon.

However, it is quite unclear how much progress has been made in improving things. Dropping out of formal mental health treatment – or avoiding it completely – is one option, but how does that help someone who wants to use that option? Protest at the upcoming APA meeting is planned, but such protests have occurred on and off for years without much significant or lasting effect.

No, I would suggest that our next challenge may be how we can all work together for mutual benefit, even those who seem to be far apart in their opinions. Time is of the essence here, especially if you have concern, as I do, about the new DSM (Diagnostic Manual) that is due out from the American Psychiatric Association in about a year. Don’t believe the claim that the members of the Task Force and Work Groups are now less influenced by the pharmaceutical industry. Although more may not be getting paid by these companies as they previously were until DSM 5 comes out, their perspective is likely to be the same as it always was, and we don’t know how they may be rewarded afterwards. There are precious few, if any, master clinicians or constructive critics of psychiatry that have been involved. If not delayed or changed, this DSM will have major effects on hundreds of thousands of clinicians, millions of citizens, and scores of patients, as the number of diagnoses are set to expand, diagnoses which still usually do not have any direct correlation to organic changes in the brain.

I would tentatively suggest that those of us who want to work together, to join under a new moniker, something like The United States of Our Minds. This moniker implies that no matter our position in life, our history of mental healthcare or caring, or what we are mad about, that we have more in common and that our minds can join for solutions. Such an alliance must also include much more than the “survivors”, the public, patients, psychiatrists, and therapists. It must include representatives of all groups who have a powerful influence on our mental health: politicians, administrators, clergy, researchers, alternative caregivers, and the like.

To accomplish such a goal, we might incorporate processes that have worked outside of mental healthcare, but can easily be applied. Here are some.

- The I-Thou Relationship

This is the kind of relationship recommended in the last century by the philosopher Martin Buber. It stresses respect and dignity of the other. It stresses authenticity. It stresses openness. And it stresses the potential holiness of each interaction, which now would include on-line, whether one believes in a God or not.

- The Truth & Reconciliation Process

At the end of apartheid in South Africa, most observers were expecting a “bloodbath” as power shifted from the Afrikaners to the native South Africans. Instead, the politician and activist Nelson Mandela, newly released from a long prison sentence, developed the Truth & Reconciliation Commission under the leadership of the Archbishop Desmond Tutu. Afrikaners who admitted their wrongdoings under duress, who did not go beyond their orders, and who asked for forgiveness, usually received a light sentence. This showed how cultural conflict can be lessened and shifts in power accommodated. In our areas of concern, we need to apply the I-Thou relationship to cultural competence, especially for those cultural groups like Native Americans and young Black American males, who too often end up in jail or prison. Power needs to be shared more with the people want services.

- Human Rights

Human rights are usually applied only to the most severe violations, such as politically motivated rape or torture. In mental healthcare nowadays, it is most obvious in enforced, for-profit residential treatment for adolescents. However, the Universal Declaration of Human Rights from 1948 was much more basic and can easily apply to all aspects of mental healthcare, from abuse to providing basic services. The President and CEO of Planned Parenthood of Wisconsin stated this principle most clearly recently: “At Planned Parenthood, we treat health care as a basic right, dispensed freely and without judgment regardless of race, gender, sexual orientation, class or age”. Let’s work to make sure this applies to mental healthcare also. For myself, I’m going to present on human rights at the upcoming American Psychiatric Association meeting.

Certainly, other names and other principles may be better than the ones I’ve put forth. But, as the old saying goes: united we stand, divided we fall.

We are a large – at least by Vermont standards – community mental health agency – and we employ hundreds of people of whom only a handful are psychiatrists.  That says something – psychiatrists play a small part in the services we offer to our clients.

Psychiatry remains a subspecialty of medicine.  Within that tradition, the psychiatrist’s main role initially is one of evaluation. Whatever one thinks of psychiatric diagnosis, the role of evaluation is nevertheless important.  When someone comes in complaining of hearing voices, the list of possible diagnoses is enormous, ranging from brain tumor to endocrine dysfunction to what Corinna West and others call emotional distress to what Michael Cornwall calls madness. I have written elsewhere about how I conceptualize psychiatric diagnosis.  Whether one likes these labels or not, the process that precedes it – listening to someone’s story, hearing how his life has been, learning of important relationships, asking about head injury, substance abuse, and medical problems, learning of his family, how he was raised, what problems or challenges other members of the family had, hearing what has meaning and value for him as well as where he feels he has been successful – is valuable.  The label that we give to the symptoms is not the most important outcome of this process but rather it is understanding what brought the person to my office in the context of this person’s life that is most valuable.  It is only after this process is completed that one might make a recommendation about treatment.

The outcome of this evaluation may lead to recommendations that have nothing to do with medications.  We help people to get housing and work. We offer different types of non-drug treatments – groups and individual counseling of various types. We might offer help achieving sobriety.  If the recommendation includes pharmacotherapy, the psychiatrist is the one who prescribes since she is the only one who can do that.  But when someone for whom I am prescribing medications returns to my office, this visit is not a “med check”; I am not checking on the medications, I am checking on the person.  I do review ongoing symptoms but more importantly, I talk to a person about her life, how she is spending her time, what is important to her.

It is true, that on a practical level, our psychiatrists are often in our offices talking to patients about medications. We are expensive and by limiting our roles to the things that only we can do, we are trying to free up resources within the agency to offer our clients the many other important services they need and request.  I guess I do not mind this role although I try to prescribe in a deliberative, careful manner. However, it is not all we do.  Our psychiatrists also spend a good amount of time in collaboration with others; we consider that critical to good quality care. We do not ask doctors to see people every 15 minutes and do nothing else. We schedule in time to talk to patients, family members, and collaborating colleagues outside of office visits.  We have insisted on this because we believe that this is what is required for us to provide good care.

It is funny that this term “med check” may have arisen within my profession.  I believe it was coined to distinguish what I do in contrast to what a colleague offering psychotherapy does.  There was a notion that I just handed out medications while my colleagues actually talked to patients.  However, I have never known how to work with someone who is, let’s say, hearing voices -without talking to the person about his experience and trying to understand what this feels like, what it means to him, and how it might be disrupting his life.  If I am not talking to my patients, what else am I doing?

So if I talk to my patients, what do I actually say? I have tried to listen carefully to what is written here and elsewhere and to incorporate that into what I have learned on my own and from my own patients.  I believe that the conversation should include a full assessment of the short and long term risks and benefits of drug treatment. This has manifested itself in my having serious discussions repeatedly about the long term use of medications and making changes to insure that a person is on no more medications than necessary.  I believe it is critical to be extremely cautious at the outset and to try and avoid the introduction of medications. Given our current cultural climate, this sometimes requires much explanation.  I am in the process of tracking my experience with systematic tapers of neuroleptic drugs and I hope to be able to report on this soon. This is often a values ladden discussion and some people choose to remain on medications despite the risks while others are extremely eager to stop.

Corinna West, Dan Fisher and others have articulated how language matters and there is nothing in what I have described here that is inconsistent with talking to people in a respectful way that promotes hope and recovery.  I try to be careful in asking people what certain words mean to them; for instance, it was not apparent to me that talking about the brain would translate into someone thinking she has a fixed problem not amenable to recovery because that is not what it means to me.  I am spending much of my spare time lately reading about stories of recovery so that when I talk to people about this, I am talking with genuine conviction rather than parroting words so that I am politically correct. It is the nature of clinical work that we tend to see people who are doing less well since the ones who are recovered have no reason to come to our offices; I have come to believe that we have an obligation to actively fight against the distorted perceptions that can develop over time.

Although we try to be cost effective, we do not limit our psychiatrists to office visits. These are some other things that psychiatrists have initiated at our agency in the past few years:

-Cognitive Behavior Treatment for insomnia – One of our psychiatrists was dismayed at the long term use of hypnotic agents (sleeping pills) to treat insomnia.  He has given lectures to our staff about sleep and he has explained why drugs are often the last choice for treatment of poor sleep. He emphasizes the role of differential diagnosis of this condition – i.e., does the person have sleep apnea or some other condition that would be best treated with non-drug interventions.  For several years now, he has offered a group for CBT for insomnia, an effective, evidenced based approach to this disorder.

-Food Education group – I have written about this elsewhere.

-Education- Every year, my colleagues and I lecture to our staff about drugs.  In these lectures, we talk not only about the drugs we prescribe but also about their limitations. I have talked in the past about the impact on advertising on prescribing practices and this year I discussed Anatomy of an Epidemic.

-Book and movie group-I just started a reading group open to any one who works or uses services at our agency.  In the spirit of Open Dialogue, this is meant to be an inclusive discussion.  We read I Never Promised You a Rose Garden by Joanne Greenberg and next month we will begin watching Daniel Mackler’s documentary, Take These Broken Wings. If you are interested, stay tuned! Our first group was a huge success and I may blog about this in the future.

I’ve been looking for a simple place to start. Something that could have a bigger impact than my one doctor’s teaspoon in our ocean of despair.

And I think I’m on to something. Rattling around with readers in the comments and replies this week has been good. I feel more hope than I have in a long time.

Please bear with a piece of my personal history here. History is important.   

When I took my oath in 1983 to be licensed to practice medicine in the State of Louisiana and to abide by the governing laws of the state, we had to study the legal code beforehand. How else were we to know the laws to abide by?

I remember one set of laws to this day because it took me by surprise. I don’t remember any of the other rules specifically because I expected them. The ones I expected were the common sense laws about professional conduct, medical conditions that must be reported to the state and tort liability limitations particular to that region of the country. Those sorts of things.

The one section that caught my attention out of the pages I was given to study were lines of legal code that were scrupulously clear about the ways in which physicians, and all other medical providers, could advertise themselves. I don’t recall the specific dimensions, but the law stated the precise size one could post one’s name on the shingle when you hung it out and the smaller size of the lettering allowed below your name for your specialty of practice. Even on business cards and in the phone book, the same size ratio of name to specialty held. No other general advertising was allowed.

I recall feeling first astonished and then pleased to discover that advertising by medical providers was forbidden by law. It was fun to imagine the situations that must have lead to the need to enact such legislation, perhaps competing doctors with sign wars across a neighborhood street. I couldn’t imagine how medical advertising could get out of hand in these modern times. We were professionals providing necessary care, after all. There is no need for big signs. When people get sick, they go to the doctor’s office. Simple.

I assumed these advertising rules to be national laws. I must have slept through high school civics class back in Ohio and missed the state’s rights part.

When I moved to Oregon in 1985 and read their laws before being sworn in to abide by the laws of that fine state, I was equally astonished to find no such rules. Although I was aware that the laws in Louisiana grew out of French Napoleonic law and were different from the rest of our country, I didn’t notice the differences till I moved away. I can only see the inside of the box once I’ve stepped outside.

At first I was sure that this lack of advertising rules meant that the medical providers in the lovely, green state of Oregon had been naturally discrete and well-behaved in the way they let people know they were in business. At the time, the range of advertising and signage was not too far out of line.

Remember, this was all a long time ago. I’m old. I remember the ban of cigarette advertising on television in this country and the liquor ad ban. There was a strong grassroots sense during the sixties and seventies that one of the government’s jobs involved public health and safety. As television became a stronger force in our culture it was clear, especially to parents, that industries were incapable of policing their own marketing campaigns. There is simply too much money at stake. The government had to step in and police the media of known public health hazards. This made sense to me.

I haven’t taken a course in economics but I’m certain I recall hearing of the effects of “supply and demand”. I also know that demand can be increased by effective marketing campaigns and by lowering the perception of supply. We’ve all seen this.

You will be better at knowing the prevalence and tenor of the current media advertising frenzy of pharmaceutical products than I. Remember, I turned off the broadcast media in my home ten years ago. Through lack of exposure, I have been so sensitized to the media that even an old movie played without sound across a crowded room snares my attention. I have to remember to rip my eyes away from it and attend to the real people right in front of me.

Last month I was in a motel lobby while on a trip. A wide television screen played behind the counter when I walked in with my children. On the wall, an achingly handsome, larger than life man with carved mahogany cheekbones was filling the tank of his vintage muscle car at a gas station in the middle of the American west. We stood entranced. I was reminded of the cigarette ads of my childhood for a moment. He looked like that cowboy.

Snap to attention. This is an ad for the pharmaceutical product that fills my spam filter every day, just what I want my kids absorbing at the end of a long day’s drive. Strangers who do not have our best personal interests at heart are handed access to our deep unconscious minds, given a straight pipeline.

Back to this economic concept of supply and demand. The most simple way to reduce the clamor for pills that has been artificially induced by advertising is to shut off the flood of advertising. This will cause a gradual softening of market demand.

We have to take a lesson from other first world countries and outlaw marketing of pharmaceutical products directly to the public. Removing the advertising pipeline from our heads is good place to start because we have successfully done things just like this in the past.

Since we’ve done it before, we can do it again. Others have walked this path around the world. We, the people, have walked this path together as well.

As always, thanks for reading me.

 
Mukherjee cites the studies finding that limiting intake of tryptophan (the amino acid precursor used by the body to produce serotonin) results in a deflated mood for those who are prone to depression or who have recovered from depression on an SSRI. These findings do not necessarily imply the conclusion that lack of serotonin is the culprit here. When tryptophan intake is limited, CRF, a pro-anxiety molecule, increases in the spinal fluid (Tyrka, Carpenter, McDougle, Kirwin, Owens, Nemeroff, Strong, Price, 2004). It is probably case that given a dietary deficiency, the body is going to adjust in some way. Who knows which proteins get shuffled around and which neurotransmitters levels are altered. It’s not necessarily serotonin.

 
In fact, the brain is very complicated. Neuroscientist Chris Lowry has shown that there are six independent circuits using serotonin in the brain. Lowry acknowledges discoveries made by his colleagues Maier and Watkins, who are also at the University of Colorado. Maier and Watkins showed that the proximal mediator for learned helplessness behavior is a serotonin circuit. Thus, the neurotransmitter for making the animal give up in despair is serotonin. One of the serotonergic circuits discovered by Lowry places a brake on the learned helpless circuit. So the serotonin story is complicated indeed. The body is using the same neurotransmitter to accomplish opposite outcomes. Of course, the body is not confused. The inputs and outputs to the circuits are distinct. But, it does mean that if an external mechanism for increasing serotonin is engaged, namely the green and white Prozac pill, it will be difficult to predict or explain the behavioral impact.
Mukherjee also cited Rene Hen’s work on neurogenesis (birth of new neurons) and Brain Derived Neurotrophic Factor, which increases the survival of new neurons. Initially, everyone was excited because antidepressants increase BDNF in the hippocampus and stress will decrease BDNF in the hippocampus. Thus, there was an explanation for the cause of depression and a potential curative mechanism. But, then others showed that blocking BDNF or neurogenesis in the hippocampus through other mechanisms did not necessarily induce depression (Airan et al., 2007; Santarelli et al., 2003). Further, Eric Nestler’s group found that BDNF in the Nucleus Accumbens was increased by stress. Interestingly, with regard to serotonin, serotonin in the hippocampus will decrease levels of BDNF (Vaidya, Marek, Aghajanian, & Duman, 1997). Thus, identification of a “smoking gun” proved elusive here as well and the role of serotonin may be the opposite of the role hypothesized by the “it’s serotonin” enthusiasts.

My own favorite theory is that inflammation best explains depression. Inflammation ties many disparate findings together. Stress will increase brain inflammation. Activating white blood cells along an inflammatory path will decrease brain levels of BDNF in the hippocampus. Creating inflammation will activate Helen Mayberg’s brain area which is activated in those who are depressed (whose work was also referenced by Mukherjee).

Mukherjee acknowledged Irving Kirsch’s FDA data analysis indicating that antidepressants have limited efficacy for the mild and moderately depressed. He also emphasized that antidepressants are effective in the severely depressed. Antidepressants do decrease inflammation. If the brain’s white blood cells are cultured outside the brain with Prozac, inflammatory factors decline. Thus, Prozac may achieve efficacy not because of a direct impact on a neuron or a neurotransmitter, but rather because of the impact on the immune system. Thus, there is a mechanism through which Prozac might achieve efficacy in those with severe depression. The problem with the antidepressants is that after two years many inflammatory markers increase (see past blogs). Thus, for the long haul, depression is exacerbated by the antidepressants.

Fortunately, alternatives to drugs for decreasing inflammation are available. Exercise will decrease inflammation, increase brain levels of BDNF, and is a proven antidepressant. Omega-3 fatty acids (available in fish and walnuts) and curcumin (in turmeric) are anti-inflammatory and have demonstrated anti-depressant properties. Increasing vagal tone with yoga or time with trusted friends places a break on inflammation. Avoid high-fructose corn syrup and saturated fats (any fat that is solid at room temperature) as they are inflammatory. Pay attention to Sandra Steingard’s recommendations on food. She has it right.

Mukherjee also referenced Helen Mayberg. Mayberg, an Emory psychiatrist, has garnered considerable attention for electrically turning off neuronal firing in the subcallosal cingulate to ameliorate depression. (I don’t think there is a clear connection between serotonin and the subcallosal cingulate, but Helen Mayberg’s research is interesting, so I’ll talk about it.) Mayberg reports that when the subcallosal cingulate is turned off, patients report that the curtain lifts. Self-focus is replaced by awareness of the outside world. My favorite Mayberg story is that when Mayberg asked her patient what he would be doing if he were home, the patient reported that he would clean the garage. Perhaps this patient’s statement is heuristic. The antidote to depression is finding something you want to do and then doing it. Increasing activity is where psychotherapists need to focus. (In fact, Peter Lewinson developed a therapy for increasing activity in persons with depression.) Vigorous activity will decrease inflammation and raise BDNF levels in the hippocampus. It’s a win all round.
Mukherjee concluded that we owe a debt to Prozac because it enabled our increased understanding. I think we owe a debt to neuroscientists who are unconcerned with the commercial implications of their research. Rather than advancing knowledge, Prozac stimulated the hypothesis that serotonin deficits cause depression. The world has wasted a lot of time on that one.

Related Mad In America links:
SSRIs: More Harm Than Good
Airan, R. D., Meltzer, L. A., Roy, M., Gong, Y., Chen, H., & Deisseroth, K. (2007). High-speed imaging reveals neurophysiological links to behavior in an animal model of depression. Science, 317(5839), 819-823.
Hale, M. W., & Lowry, C. A. (2011). Functional topography of midbrain and pontine serotonergic systems: implications for synaptic regulation of serotonergic circuits. Psychopharmacology, 213(2-3), 243-264.
Ito, W., Chehab, M., Thakur, S., Li, J., & Morozov, A. (2011). BDNF restricted knockout mice as an animal model for aggression. Genes, Brain and Behav. doi: 10.1111/j.1601-183X.2011.00676.x
Krishnan, V., & Nestler, E. J. (2008). The molecular neurobiology of depression. Nature, 455(7215), 894-902.
Kubera, M., Obuchowicz, E., Goehler, L., Brzeszcz, J., & Maes, M. (2011). In animal models, psychosocial stress-induced (neuro) inflammation, apoptosis, and reduced neurogenesis are associated to the onset of depression. Progress in Neuro-Psychopharmacology & Biological Psychiatry, 35, 744-759.
Lowry, C. A., Hale, M. W., Evans, A. K., Heerkens, J., Staub, D. R., Gasser, P. J., & Shekhar, A. (2008). Serotonergic systems, anxiety, and affective disorder: focus on the dorsomedial part of the dorsal raphe nucleus. Annals of the New York Academy of Sciences, 1148, 86-94.
Lowry, C. A., Hollis, J. H., de Vries, A., Pan, B., Brunet, L. R., Hunt, J. R., et al. (2007). Identification of an immune-responsive mesolimbocortical serotonergic system: potential role in regulation of emotional behavior. Neuroscience, 146(2), 756-772.
Maes, M. (2011). Depression is an inflammatory disease, but cell-mediated immune activation is the key component of depression. Progress is an inflammatory disease, but cell-mediated immune activation is the key component of depression. Progress in Neuropsychopharmacology, 35 (3), 664-675.
Maier, S. F., Amat, J., Baratta, M. V., Paul, E., & Watkins, L. R. (2006). Behavioral control, the medial prefrontal cortex, and resilience. Dialogues in Clinical Neuroscience, 8(4), 397-406.
Maier, S. F., & Watkins, L. R. (1995). Intracerebroventricular interleukin-1 receptor antagonist blocks the enhancement of fear conditioning and interference with escape produced by inescapable shock. Brain Research, 695(2), 279-282.
Maier, S. F., & Watkins, L. R. (1998). Cytokines for psychologists: implications of bidirectional immune-to-brain communication for understanding behavior, mood, and cognition. Psychological Review, 105(1), 83-107.
Tyrka, A. R., Carpenter, L. L., McDougle, C. J., Kirwin, P.D., Owens, M. J., Nemeroff, C. B., Strong, D. R., & Price, L. H. (2004). Increased cerebrospinal fluid corticotropin-releasing factor concentrations during tryptophan depletion in healthy adults. Biological Psychiatry, 56 (7), 531-534.
Vaidya, V. A., Marek, G. J., Aghajanian, G. K., & Duman, R. S. (1997). 5-HT2a receptor-mediated regulation of brain-derived neurotrophic factor mRNA in the hippocampus and the neocortex. Journal of Neuroscience, 17 (8), 2765-2795.

This person’s response was, “Well, I agree with you about medications and labels and I help people get UnDiagnosed pretty regularly.”  This was a 20 minute conversation and this speech of his took 19 minutes. BUT he did not ask me what or who these mental health civil rights workers were or how he could help. It didn’t seem like he thought I had anything to contribute to his education. Somehow this deeply offended me. I thought, “How can you say you’re not the butcher if you don’t know the true extent of the slaughter?”

Lyle at the Kansas City Critical Mass. Bicycle pedestrian advocacy is important, but not my focus.....

My second thought was, “Well, if you know the problems, why are you not working on a systematic way to fix them? Or talking to people like me who are?” What good is throwing back one starfish at a time when we can fix the tides so the starfish don’t keep getting washed up on the beach?

But then, of course, is the saying, “Well, it mattered to that starfish.” It might be that looking at starfish one at a time helps keep from becoming overwhelmed.

I miss my friend Al who died of being medicated and labeled. I miss my Olympic team training partner Brenda who died from knowing the injustice of this system and choosing not to enter it and not knowing where else to turn. I figure all mental health professionals are in a position to know about the extent of the problems, and should want to know. But what I have found is that they are actually my most difficult audience to talk to.

The general public is often quite appreciative of my work. They truly get problems with medications and labels and understand ideas like The Underground Railroad and building social messaging efforts. They like the new language around emotional distress so we no longer have to use the words of disease and oppression. They often laugh or identify strongly with catchy phrases I come up with:

Tweetable mental health advocacy messages

The Fae of the Wildwood Parade at the Midwest Queerfest. LCBTQIA advocacy is important but not MY focus...

• My job is not to get people into the mental health system, it’s to get them out.
• Recovery means “all this” goes away.
• A diagnosis can be a permanent solution to a temporary problem.
• Community mental health is cheaper than jail, but just community is even cheaper.
• Community mental health centers are dinosaurs, budget cuts are the asteroids, and peer support is the mammals.
• If meds alone caused recovery, everyone in the US would be recovered by now.
• Schizophrenia is when someone freaks out and sees a doctor instead of talking to  the priest, psychic, local skateboarder dude, or the Star Trek club.
• Problems in mental health care can be summed up in one word: “Medicalization.” The solution takes two words, “Peer support.”
• Fund what’s effective, not what’s expensive.
• Look at temporary emotional distress, not permanent disease.

Whenever mental health professionals hear these, they either just blow me off, or tell me these phrases are offensive. I designed some Please Cut Our Budgets shirts that really raised some hackles. The other response I get from mental health professionals is that they say, “Oh, but I agree with you.” Once I brought up the problems with medications and labels at a meeting, and every single person in the room had to go around the table and give me their justification, their “I am not the Butcher” speech. I’m sure many advocates have heard these speeches. In this particular room, they went like this:

Examples of The “I Am Not the Butcher” Speech

• “Oh, well, I’ve been to a lot of group homes and I see people overmedicated and it’s usually when staff is trying to make their life easier. BUT….I’m not sure it’s right to question medication effectiveness.”
• “My organization is a big organization, and we need to challenge our assumptions, and stay open to new ideas…. BUT What would you do with those people if we didn’t have hospitals?”
• “I work in government and we fund many different organizations and we make sure to provide accountability. We fund police trainings, we try to do a good job….BUT making approaches are consumer driven is good enough.”
• “I just try to ask people what will help them and not get into my personal point of view….BUT what you’re talking about is just a belief and semantcs.”

Participants at the Martin Luther King rally in Kansas City, KS this year. Racism is huge, but not my focus...

This last one was from a fellow service recipient, but one who is a disease model advocate from one of the disease model advocacy organizations. Later someone told me something funny, that “semantics” means meaning. Anything with semantics has meaning. So when people who talk about your point of view being “semantics” it’s saying, “You are saying something I don’t want to hear.”

There are many mental health professionals who know some of the problems with mental heath care but not the full extent of the damage being done. They choose not to work in advocacy or reforming the system. Yet there are many areas of injustice I am aware of where I choose not to work: climate change, gender rights, prison reform, drug laws, water rights, etc.

What makes me different for not working on those areas than mental health providers who are not advocates? Is it that many of them, in their ignorance, are still harming my brothers and sisters? But my lack of efforts on climate change may be harming my African brothers and sisters dying of drought. My lack of efforts on prison reform will lead to detained people’s deaths. My lack of efforts on water rights might lead to a massive die-off when the 40% of people in the world who get drinking water from glacial runoff have no more glaciers. So how am I not a butcher?

We are all the Butcher

Sunbeams on the Missouri River over Kansas City, KS. Pollution and water rights are big, but not my focus......

I guess what I’m saying is that everyone has to, in their own head, tell themselves a story about why they are the good guy, why they are doing the right thing, why they are making the best of their life, why they are doing the best they can. So, when we come back to my question about, ”How can you say you’re not a butcher if you don’t know the extent of the slaughter?”

I think I’ve come up with two answers:

1) We are all the butcher. We do need to work on finding effective consequences for the 1% of people doing the worst offenses. We need to figure out civil and/or criminal liability so the pharma CEO’s and the worst of the academicians do not repeat what they have done.

Mental health advocacy IS the focus of my work, but other people work in OTHER areas.

Yet, before we get mad at people for not working in mental health advocacy, why are we not working in gardening, pollution, water rights, LGBTQIA rights, or bicycle advocacy? The answer for me personally is that I have chosen to focus my efforts in one area because if we can answer our problems, maybe it will show us how to answer other problems. But people may have different answers and different other priorities.

Most of us are just caught along. In a way, we are all killing each other and just doing the best we can to minimize it. When we harass someone for having a slightly different role in the killing as us, it just makes us mean, and not followers of the practices of forgiveness that are a part of many spiritual practices. I have a poem about this, called, “I am the Oppressed and the Oppressor.”

2) Telling someone they are the butcher isn’t effective to stimulate learning, only defensiveness. I’ll finish with a quote from Pablo Sadler, the Medical Director of the New York City Bureau of Mental Health that I met at the Foundation for Excellence in Mental Health Care conference in North Carolina. “You cannot call me a butcher then ask to sit down with me.”

And right now we have a lot of sitting down and talking to do.

Fava, G. A. & Tomba, E. (2009). Increasing psychological well-being and resilience by psychotherapeutic methods. Journal of Personality, 77, 1903-1934.

Kammeier, M.L., Hoffman, H., & Loper, R. G. (1973). Personality characteristics of alcoholics as college freshman and at time of treatment. Quarterly Journal of Studies on Alcohol, 34, 390-399.

None of this enormous mess we are all in together is brand new. We, as a nation, have grown into it rather slowly. Perhaps if this mess of a medical system had happened more suddenly it would have been easier to spot, easier for us all to perform the necessary pruning. Our entire country and all of us are buried to the neck in a quicksand that has been designed, bit by bit, over the decades. It’s deep.

It’s easy to lose energy and focus pointing at one another; pointing and blasting away. The easiest shots to make are at those closest by, the ones that are here, by your side.

It’s easy to lose power and momentum for movement toward meaningful change by imagining that psychiatry, psychiatrists and our patients are the only issues at stake; that we are the special case with special issues and that psychiatry is THE problem.

But I’m afraid we’re not the whole picture. We are important. Very much so. Every single person and their suffering is important. But psychiatry and it’s devolution to a pill model of care is only a ripple in this ocean of pill focused medical care we’re drowning in.

I keep coming back to this question, over and over:

“Can I, as one single individual physician, make any difference in where we, as a nation of about 311 million people, go from here? Can I make any difference with regard to finding ways to provide sensible and equitable healthcare for everyone?”

Although I’ve been gone from the practice of medicine for eight months at this point, I did spend almost a year back at work after I read “Anatomy of an Epidemic”. On the sunny afternoon I finished reading this book, I was certain I could not go back to work as a psychiatrist. Ever. It was a dark night of my soul in the middle of a brilliant sunny day.

I sat on the porch, watched the green trees and blue sky. I thought about many of the people I had treated with psychiatric medicines. I wondered how his life or her life would have been different if I had not given them medicines. I felt I needed to go away till I could get perspective on it all.

But the next morning a friend called and told me they were short handed at the clinic. He asked if I could come in and help out.

I thought, maybe there’s a way I can have a positive and transforming effect by working from inside the system.

I spent much of the next year saying “no” to a lot of requests for pills, saying “no” to dosage increases, explaining my concerns about the medicines to patients, colleagues and co-workers, reviewing and encouraging alternative approaches to managing symptoms.

Over that year I did not meet a single patient that did not come with a request for pills. My “no” and alternatives were met with “I’ll come back when the other doctor’s here” and “I don’t have time to exercise” and “I can’t afford therapy” and “If you don’t give me meds I’ll get kicked out” and “Alcohol’s not a problem for me” and “I haven’t used meth in two weeks and I still feel bad”. There was even one anxious pregnant woman who told me she’d already had a baby that required open heart surgery at birth. She demanded I give her the same medicine again. I did not. Patients did not thank me for protecting them from the effects of the drugs.

I’ve been happy to hear from all the people who do not want to take medicines and who want to taper to the lowest possible doses. You are not the ones I met at work. Not at all.

The system feels massive to me. The weight of the moving freight train of history embedded with clinical staff, funding managers and well marketed-to patients is bigger than me. I felt like I was bailing the ocean with a teaspoon. Galileo was jailed when he said the earth moved around the sun. I was simply overwhelmed by telling the truth every day I went to work.

I am here to use what I hope to be more powerful and wide-reaching tools than seeing patients, one by one; words on Robert Whitaker’s webzine.

I’ve known for a long time that words create the world. I mean this in both a practical sense and a philosophical one. I’ve written medical records and reports and requests for care authorization and disability claims. I understand how words on paper are used to define who and what we are. I also know that the words we speak and write and hear create our realities: angry words create an angry world and kind, loving words create a loving world.

No one who participates in this discussion comes to the table completely alone. And no one, alone, wields power sufficient to remake the practice of medicine into the cooperative two-way relationship and meaningful healing profession it could be.

this structure in place highly value competitiveness. The siblings are often competing for attention for one another. It is often the only child or the firstborn who is placed in the glorified role. If they meet the expectation, they are heaped with praise, if they do not; they are likely to be cast aside. Once cast aside, or in the worst case, cut off from the family, they often enter into depressed states. They may seek various avenues to mask their feelings of inadequacy. These feelings of inadequacy may impair their future relationships. They may become those always striving for an unreachable ideal, always slightly out of reach. They cannot fully accept themselves in the present moment, but always want to be gaining or achieving more. They become individuals whose level of dissatisfaction can become immense.
There exists in some families as well where the gap between ages of the siblings is significant, and where one sibling may have been seen as having provided a contribution to the family and deemed ‘successful’, and the far younger sibling once reaching the ‘freedom’ of adulthood develops a resentment towards the older sibling and adopts a victim mentality. This then can lead to the younger sibling entering a period of rebellion, rejecting opportunities, and seeking to align himself with those who standards are lower than himself or that of his family. By doing this, the younger sibling can stave off their feelings of inferiority.
There is the public image and the private image. This dichotomy often creates great confusion and distress and can lead the child to questioning of reality and their identity. What is meant by the public image is what the leader(s) of the family structure wish to convey to the outside world, whereas the private image is that dysfunction which lies within that these individuals are wanting to conceal at whatever cost. Familial secrets exist, trust is lacking, and children are guarded about their expression. Children may be lied to and dilemmas between family members masked or suppressed. The real nature of things may be shrouded in confusion and ‘mystery’. Mixed messages may arise, or the members of the family may see themselves placed in ‘damned if you do and damned if
you don’t situations.” Some family members may frustrate themselves in striving for the ‘ideal’ structure which never arrives.
In the dysfunctional structure, as in oppressive societal regimes, there are those who seek rebellion. Rebellion against the structure becomes more pronounced in the stage of adolescence where already the teenager is beginning to exert a greater sense of autonomy and desire to be apart from the familial structure. However, because children lack the resources for which to engage in a rebellion that could be successful, the rebellion is always squashed. What does this leave the child to do? They can do little but endure and await the period where they can break free from the structure that they find oppressive. What is termed ‘conduct’ problems is usually this desire to break free from what the child has perceived as oppressive in their lives. Often without the appropriate guidance and ‘moral compass’ coming from the familial structure, their rebellion turns not just to fighting the familial structure, but the structures outside which also resemble the authority they have found oppressive. This type of rebellion is usually futile and self-destructive. There exists the warring between parents themselves, which cause the children to be placed in the predicament of divided loyalties, not knowing which parent to turn towards. There may exist the opposing styles, one parent who is permissive and one who is the authoritarian. This scenario leads to immense conflict.
In the worst scenarios, the combination of ‘seared in’ memories of trauma, with the dynamics as mentioned above leads to the disintegration of the person. Reality is too painful, and is questionable. Reality is not reliable. As a result, this member of the family seeks to ‘break out’ and develops the behavior that would be termed psychosis. They retreat into their own inner world, their own sense of reality and identity. This too is often a painful journey, but not anymore painful than the experience of the structure they have felt subjected to. Children in some structures are still viewed as ‘property’; therefore they are often enslaved to the faulty structures. Mere compliance does not earn one’s freedom but neither does active rebellion. Cycles exist, once a structure is learned, it is bound for continuation. The child in many instances will perpetuate the structure that they learned once they have their own family to lead. The stresses and trauma of one can often become the stresses and trauma of all, it becomes a collective trauma. The faulty structures within the family dynamics are seen in society as a whole. Therefore, we are all shaped by the society and the family structures in which we have encountered. Thus, concepts of ‘mental illness’ or the ‘unruly child’ all take shape and form by the experience one has in the family and ultimately in society. These are not biological processes, but rather social and political processes.

As Laing states, ” psychotherapy must remain an obstinate attempt of two people to recover the wholeness of being human through the relationship between them.”
The distressed adolescent often has feelings of abandonment, emotional detachment, withdrawal, and isolation. These children begin to develop an intense anger directed towards an adult society that they feel has hurt them and does not understand them. Parents need to learn how to build relationships with these children and this can be accomplished through a process of emotional coaching, of allowing the child to express their feelings without judgment while providing clear guidance, limits, and
expectations. It is often inconsistency and lack of clear guidance from parents that further the struggles for these children who then begin to seek guidance from misinformed peers.
These children need love, affection, and a non-judgmental atmosphere. If love does not come from a meaningful and sustainable adult relationship then it will take on a new and contorted character where the concept of ‘love’ comes from trying to be accepted by peers (even if they be negative ones) as the child will know that they will find a source of non-judgment and will be ‘liked’ even if it causes their eventual self-destruction. Affection that is not provided by adults, who should be responsible, is then replaced by irresponsible sexual activity where the teen not only seeks for pleasure in a world that often provides only hurt, but feels once again that through sex, they can find a sense of acceptance and supposed emotional connection.
Some teens are so hurt and are suffering from the adults in their lives and the chaotic environment in which they dwell, that they turn to ‘radical rebellion’. This can be seen with those children who are ‘cutters’ as well as those into such movements as punk and goth. With cutters, the emotional pain and trauma they have experienced is so intense, that their mental anguish manifests itself physically through the act of cutting. For the goth teen, who dwells in a world of emotional darkness and frequent experiences of despair, once again, this mental anguish displays itself in physical signs through the wearing of dark clothing, dark objects, body piercings and fascination with things associated with death. There are also those teens who involve themselves in gangs as they
are seeking a sense of connection with a ‘family’, even if this ‘family’ causes them to engage in dangerous behavior. The desire for a connection with someone who they feel will accept them outweighs their thoughts of any sense of danger or risk.
Teens are seeking autonomy, but they must be taught by responsible adults that this autonomy they desire also comes with responsibility. Many teens who are distressed feel that they are controlled and are criticized. Rarely, are distressed teens positives and strengths accentuated but teachers, parents, and others frequently focus on the negative. The child enters despair and has no motivation or drive to change because they have been taught by the adults around them the attitude of ‘why bother’ and the feeling that they are without worth.
Parents and others must stop looking at the child as the ‘problem’ or try through various means to uncover some ‘hidden problem’ or try to blame the problem on others. If the parent can be honest and introspective, no matter how difficult and even painful that may be, they will find that there are ways that they can help alleviate the suffering of their child and they may even uncover that there were ways they contributed to this suffering. This does not mean the parent must wallow in guilt, but rather to recognize the things that must change for the teen and the family to have a more harmonious relationship.

When children have experienced abuse and abandonment in early childhood, this often becomes a ‘seared in’ memory and halts emotional development to the point where the trauma occurred. They may be seen to have a more ‘infantile’ mind. These feelings of abandonment are often furthered by demeaning words and condescending language used with the child. Each times this occurs; the child begins to look at themselves as a ‘non-entity’. They experience existential death. The external conflict that children see amongst their parents becomes an internal conflict for them, the internal conflict then manifests itself externally (usually as aggression). The child becomes devoid of trust, and those who draw near often become the persons who this internal conflict is unleashed upon. It is not that the child is devoid of any feeling for the person seeking to connect with them; it is rather that every connection had strings attached or every connection has been severed. The child becomes anxious and afraid of loss, of even losing themselves, if they are to try again to embark on the process of building a trusting relationship. Laing (1969) stated that ‘if there is anything the schizoid individual is likely to believe in, it his own destructiveness. He is unable to believe that he can fill his own emptiness without reducing what is there to nothing.’ It will be common then for these children to question whether they deserve ‘happiness’ and many times question if they even ‘deserve to exist’. The children who have undergone the trauma of abuse and abandonment lack an identity of their own; they appear as a construct of others and often are conformist. They do what they feel will earn them the praise of others. But in reality this is based on their own fears and their negative perceptions of themselves. These children are prone to be seen as manipulative, but this is because they are seeking to exercise control over some aspect of their lives when prior they had absolutely no control. They strive for ideals they cannot be met. Often their intense desire to control or to engage in certain activities in reality is a crying out for their real desire- to have an actual loving and trusting relationship. But these children do not know how to respond to an outpouring of love. They feel that they do not have a voice, are not heard. It is easier for them to feel hated than engulfed by love, particularly when they have seen love to be about control. They desire autonomy and feel they will lose it in the process of building a true relationship. These children may begin to also de-personalize; they may not be prepared to relate to other persons. They may be perceived as lacking empathy, however this is not that it is not there or could not be there, rather it is their fear that blocks their emotional expression of empathy.
These children are often very hurt so they feel they must hurt others.
What do we do? How do we reach such a child? It requires a patient approach. We must allow the child to vent their frustrations. We must share our understanding that we know they are hurt. We must journey with them as they relate their experience of trauma. We do not judge them or withdraw. Even when their emotional expressions may cause us to be afraid, we continue to reach out. We need to be able to forge relationship know matter what and to help the child come to an understanding of life’s impermanency, yet we can still strive for happiness now. The trauma is past and does not need to haunt us. We can encourage this child to explore their own sense of self and engage in activities that give

them a positive sense of self worth apart from others. Caregivers and others need to make themselves emotionally available, to look at emotional expression as a time for intimacy and teaching. We need to be able to understand the behaviors, even that which are annoying to us, as a means of communication, and when the child is in the ‘right space’, to communicate with them and help them process those feelings that were behind whatever incident occurred.
We may be prone to drug the child because the behaviors are seen as ‘out of control’ or ‘disturbing’, but whereas this may cause the problematic behavior to lessen, we may be making a grave mistake. We may be subduing the very process by which the child is able to release the tension and pain. We may be numbing but not looking at the root cause. Unless we see the behavior, how can we truly know what to do? If we cannot allow the child to express their distress, how will we truly know of their distress?
To be simple, our means of reaching this child is this- to be with them unconditionally.
How do we make sense of the troubled teen? Particularly those who enter the world of addiction, whose family relationships are torn, and who are often seen associating with ‘negative’ peers? Many will assume that these teens can be easily identified by their style of dress or maybe by their class, but these struggles can be found in many families. Behavior can be seen but not experience. What the child may interpret as their experience may be very different from the parent and vice versa. What may have been gravely traumatic to the child may not have been seen as such by the family. In our society today which causes us immense stress and pressure to survive (if we are poor) orattain more (if we are well to do) has diverted attention away from understanding experience. Society has now sought to medicalize experience where any thoughts and feelings, any part of our human condition need not be understood but numbed by a pill. We are a numb society responding to societal pressures. These pressures become unleashed on our children. A parent may fear that their child will endure hardship that the parent may have endured so the parent seeks to force and coerce the child ‘out of love’ to achieve and do what the parent desires. The teen in a state of exerting autonomy feels threatened and thus rejects in toto the guidance of the parent and seeks after peers who will understand their experience and their pain.
As I mentioned that we are taught to be a numb society, some teens choose to numb their emotional pain by illicit drugs. This idea has been instilled by our society. The teen may not realize the self destructive course they are taking because they have convinced themselves that they are free. But it is not freedom they possess, for freedom comes with responsibility, rather they have traded one slavery for another. Parents must take the time to understand the world and experience of the teen, to build communication which seeks to understand their desire for autonomy and which respects their experience. An overprotective stance and coercion leads to the breakdown of communication which is vital for any relationship to survive. We often distrust children, we do not allow them the ability to make decisions and when they are poor ones to see the logical consequences. Why is it that adults assume they possess the wisdom when adult society has engaged in numerous conflicts costing many lives? Could children make the right decisions or better
decisions if we solely gave them support and listened and journeyed with them rather than seeking to take away their autonomy they so desperately desire?
We all seek to be free. When we seek to create the identity and destiny of the teen, we will fail. They will not be able to develop an identity of their own but will grapple with who they are, meaning, and their purpose. We must allow them to find themselves as we as adults function as coaches in this game of life. We cannot think we can play the game for them or can manipulate the results. When we can become involved with children again in a relationship of trust and respect, then it is possible that what is seen as troublesome behavior will diminish. When the child feels validated, supported, heard, and able to have a voice, they will in turn give the same to the parent. We must be cautious of what we model. If we seek to coerce and manipulate the child to meet our desires as adults, we will have manipulative children. Our methods of communication will be the children’s methods. If we focus our time on the mundane, we will find children to do likewise or seek to rebel against this system. Because of the imbalance in power, the child’s rebellion is never successful but mostly self destructive but they rarely recognize this. We can restore sanctuary to families, but it is up to each to take ownership and responsibility for creating it.

In my last blog I wrote about the links between industrial agriculture and the pharmaceutical companies and the importance of food to our overall well being and health.  In this blog I will discuss practical approaches to improving the quality of our diets.  People vary in their knowledge and sophistication on this topic.  I try to keep my message simple.  Lest you think I am being the patronizing doctor, I will add that I share with many of my patients a difficulty in eating foods that are optimal for my health.   For much of my adult life, I  was content to eat highly processed pre-cooked foods.  Like so many people, I often ate for reasons that had little to do with how hungry I was.  In this regard, I am not a doctor talking at a patient, I am a doctor who shares in the struggle to avoid the temptations of the easily accessible but not terribly nutritious foods that surround us.   I just try to use my training to share what I have learned with those who come into my office.

As I mentioned previously, I am heavily indebted to Michael Pollan for my thinking on this topic. One of the things that he talks about is the notion of nutritionism by which he means the search for the secret nutrient(s) that will bring us health.  In this regard, I think there is an analogy to what Whitaker described as the search in medicine for the “magic bullet.”  In each instance, there is a tendency to form premature conclusions about effective treatments. With food, in particular, we risk not only making premature conclusions about what nutrients are benficial but also loosing the fundamental pleasure that eating and cooking can bring to our lives.

This topic can be overwhelming.  I have distilled my recommendations into three main points:

Keep it simple.

One can get lost in reading about what fatty acid or vitamin or other micronutrient is the source of good health or the treatment for a particular disease or symptom.  Fortunately, if you keep your plate full of fruits and vegetables, you have a good chance of getting a wide variety of nutrients into your diet.  The simple admonition to have a plate full of color will go a long way to providing you with the nutrients you need; it is the vitamins and nutrients that give foods their color.  If you add whole grains and minimize your intake of meats, you will make a huge impact on the health of your diet.

Keep it focused on providing energy and not solace. 

We eat to get the energy our body needs to keep us functioning. Babies do not over eat.  Although some of us may be predisposed to becoming over weight, for most of us, the tendency to eat beyond what our bodies need to sustain us develops over years and is highly influenced by our environment.  Being mindful about food is easier said than done but it can be practiced and learned in the same way that we learned to eat without thinking about what we were putting into our bodies.  We can remind ourselves that when we eat the foods our body needs, we are honoring our bodies and taking care of ourselves.  This can become the positive message that replaces the one that leads us to grab foods that give immediate satisfaction and short term pleasure.  Simple measures such as writing down everything we eat, can be a first step to change.

Keep it social.

It is easy to loose the pleasure of eating. This can happen if one is always struggling to deny oneself the “pleasure” foods.  It can happen if one is critical about food choices. It can happen if one is stressed about getting food onto the table.  By learning some simple cooking techniques and occasionally sharing it with a friend, food can begin to return to its central place as being one of the most pleasurable aspects of life while we still maintain a healthy and nutritious diet.

What we do.

At our clinic, we have tried to bring these concepts into people lives in a few ways.  We offer a group called Food Education. This is based on an evidenced based curriculum developed by Boston University’s Center for Psychiatric Rehabilitation.  We try to give people some basic information about food and we cook some simple meals together.

I also worked with a group of medical students to develop a simple cook book for our clients.  The students came up with meals for a week – 7 breakfasts, lunches and dinner. Their task was to offer a variety of simple meals with healthy ingredients that were affordable on a income that is budgeted for less than $70/week for food. There is one section that provides a weekly meal plan: it gives the shopping lists, and a step by step guide on how to provide the weeks worth of meals. It only requires cooking a couple of times in the week.  We have sold the book as a fundraiser so that we could offer it to our cients for free. I have posted this to a Google document for anyone who wants to download here.

This is not an easy process.  The influences in our culture to eat processed foods are powerful.  They work well! The best cognitive psychology is practiced by advertising agencies.  We try to give people the tools that can help them to make healthy choices in their lives.  As I know from a lifetime of experience, however, having the knowledge does not always translate into behavioral change. In this regard I sit beside my patients not across from them.  In my next blog, I will write about why it can be so hard to make these changes.

Resilience in Recovery

“There’s not a whole lot I can’t be”. – Bryan Anderson

I don’t know if you saw this story or not. I hope you did. Or will. It was the cover story of the weekend edition of USA Today, April 13-15. At first, I involuntarily recoiled a bit, but then came some emerging tears of sadness that turned into tears of astonishment, almost joy.

No, it was not a story about the Titanic 100 years later, although that, too, was a traumatic event for America and those who survived the sinking of the ship. This story was “Defending America, then inspiring her: wounded veterans of Iraq and Afghanistan become motivational speakers, sharing stories of valor and survival before riveted audiences”, by Chuck Raasch.

The picture of Bryan Anderson showed his resilience and what he was recovering from, at least outwardly. He was in a wheelchair, missing both legs and his left hand, but with arms outstretched and mouth depicting pride, determination, and triumph. He had just spoken at a fundraiser for the 1^st Lt. Cleary Memorial Fund. Cleary was killed in Iraq. Anderson himself joined the Army on September 11, 2001, and suffered those injuries 4 years later from an improvised explosive device. Now he snowboards and gives motivational speeches, among many other activities.

There can be no question that the armed forces were late in preparing to treat the physical and mental injuries from this prolonged war. But they’re catching up, often with some innovative treatments, especially of so-called Posttraumatic Stress Disorder (PTSD).

We know pretty well that psychiatric medication does not have a whole lot of long-term success in PTSD. Maybe some brief symptom relief, at best, in preparation for other therapies. I don’t even recall that PTSD was covered in Mr. Whitaker’s book, “Anatomy of an Epidemic”. There is no anti-trauma medication. And, in contrast to most official psychiatric disorders, we know the major cause of PTSD, severe trauma that feels threatening to one’s life.

So, after trying to catch up with traditional treatments, the armed forces are now also innovating. One is the use of therapeutic dogs. Another is inspirational music, such as the song “Survive” by Rise Against, that helped rescue Mr. Anderson. I would like to think that Mr. Anderson would also like the Beatle’s song “With a Little Help From My Friends”. Another is to not hide their physical damage from a public that at first may be horrified and guilty, but to show and relate what happened to them. All this would fit so well how he and another buddy who lost his legs rented a car and drove it. Mr. Anderson steered, while directing his friend on the floor to work the brake and gas by hand. It seemed so astonishingly successful that the Army guard at the Walter Reed hospital gate, after a long pause, waved them on with: “You’ve gotten this far. Move on”. Of course, this won’t work or be possible for many others, but even so can be a model of inspiration. Social media and YouTube can spread their stories easily and quickly. Seeing this story reminded me of so many others in my own work.

I think of patients of mine that I’ve worked with in prison. One was formerly in the Army Reserves, hoping for a long and successful career in the Army. However, after an atypical night of drinking, he killed a young woman while driving. At first, he was quite depressed and his family physician gave him an antidepressant. But after he was in prison for awhile, he was determined to make amends and get off the medication. I worked with him to slowly decrease and stop the medication as he contacted the family of the deceased, asking for – and eventually receiving – forgiveness, a version of the Truth & Reconciliation process developed in South Africa after apartheid ended.

I think of my patient with cerebral palsy, always in a wheelchair, but always with a smile on her face. Actually, the physical limitations turned out to be the least of her problems. Powerless as a child, she was horribly sexually and physically abused, but slowly and courageously, was able to remember and reframe that abuse, now becoming a peer specialist.

I think of the many transgendered individuals, trying to hide their desire to be the opposite gender growing up, but being ridiculed anyways. Often having tried to suppress their desire, they marry for love but not attraction, going on pretending until they felt they would have to change or die. Then often having to risk losing most everything to go through the painful and expensive physical changes and possible social rejection if they don’t “pass”.

I think of my own mother. From her I got whatever resilience I seem to have. Suffering damage to her heart valves from rheumatic fever at age 19, she stayed in bed for almost a year. Later, taking at risk of her own life, she took the chance of having 2 children. Her health slowly deteriorated, though you wouldn’t know any of this if you saw her. Or heard her. Not a mean word did I ever hear. Finally, after again staying in bed for many months at a time, she had some of the first valve replacements, with long and painful recuperations, seemingly willing herself to live until all her grandchildren were born.

Everyone I’ve ever known in life has suffered trauma, loss, and/or setbacks. Resilience seems to be the one key quality of all who move on successfully. New studies even indicate that resilience is a key factor in those who recover from what is called schizophrenia (Anne-Kari Torgalsboen, Clinical & Related Psychoses, January 2012).

Though it may be hard to define exactly what resilience is, there is a measure of resilience, the Conner-Davidson Resilience Scale. We do know that resilience has little to do with continuing anger, blame, and self-pity; it has a lot to do with hope, forgiveness, and the courage to move on. Keeping in mind the inspiring stories of others helps; taking joy in the failures of others does not.

Our genetics can help or hinder. Just think of babies who bounce right back up instead of becoming overly fearful. The love and encouragement of others helps. Veterans coming back from Viet Nam 40 years ago were unfortunately and inappropriately much more ostracized than our current “wounded warriors”. Adequate resources are necessary, but not sufficient.

Robert Jay Lifton has spent a half century around the world researching our destructive and dark sides, and has come to appreciate how resilience can help us recover and adapt to a rapidly changing and risky world (The Protean Self, University of Chicago Press, 1993). By using humor and even self-mockery, being open to new ideas, being inclusive whenever possible, and maintaining an ethical commitment, a protean self may emerge that is able transform trauma into various expressions of insight,  compassion, and innovation. He views Vaclav Havel, the former President of post-communist Czechoslovakia, who recently died, as a major example of public proteanism.

Whether one believes or not in the ongoing “war on terror” is not the issue here. Nor is whether one believes that PTSD is a psychiatric disorder or a normal response to extreme trauma in the more vulnerable. What is of issue is how we can become as resilient as possible to be our best protean selves. This is not easy, but we must try.

This is a big subject, one that I think should command the attention of our entire society, given how profoundly psychiatry shapes our society today. I wanted to have people with lived experience writing here, social workers, psychologists, providers of services, journalists, ethicists, psychiatrists and other physicians.

We are slowly working toward that goal. And as we do, I have become more convinced than ever that it is important that this site invite and welcome bloggers who may have quite differing opinions about current practices and how to make things better. That is the only way to stir a robust “dialogue” about this subject.

Posted comments by readers are an important, essential part of that discussion. In fact, it is an aspect of this site that I particularly like. I very much enjoy reading what people have to say in response to a blog, and in response to other people making comments.

At the outset, I decided to not screen comments. People could post their comments and they would appear instantaneously. One reason for that is that I believe in free-wheeling discussions, and, second, I hadn’t figured out, in my own mind, what sort of comments might hinder, or shut down, the discussion.

But now I think I do. We encourage readers, if they disagree with the content of a blog, to say so and to express their reasons for why they disagree. Readers should make an argument, point to facts, and tell of personal experiences (and hopefully in a calm, measured way.) All that is good. However, what shuts down discussion is when a comment attacks the person (rather than what the person has written), or seeks to personally discredit the person. This is true whether the comments are directed toward the blogger, or toward someone else commenting on the site. People commenting on the site shouldn’t worry that they will be personally attacked for their views.

And thus my conclusion: The comments’ section has a very simple goal, which is to further discussion,  and if comments distract from that goal, and instead serve to stifle discussion, then they are not helpful.

So this will be our new policy. Comments will still appear instantaneously. But if we find a comment that is attacking the blogger personally, or another commenter personally, we will pull that comment, and we will do so for an easily understood reason: the comment is not serving the purpose of adding to the discussion, but rather shutting it down. And when that happens, all readers of this site lose.

As more and more people started using WRAP, particular Values and Ethics evolved around its use.  People agreed that it was essential that there were values and ethics that people could expect would be followed in the administration of WRAP.   And they felt that these values were vital to people’s success with WRAP.   I checked them out over and over with people.  Finally we came up with a list that people agreed on.  I wish they were used as a guide for all mental health service provision including peer support.

They are:

1.   All WRAP groups and related activities give people hope that they can feel better, get well, stay well for long periods of time and do the things they want to do and have dreamed of doing with their lives.

2. Self-determination, personal responsibility, empowerment, and self-advocacy are essential to the achievement of positive outcomes with WRAP.

3. In WRAP groups, people treat each other with unconditional high regard, there is no hierarchy of any kind, everyone is equal, and each person is treated with dignity, compassion, mutual respect, and unconditional high regard; as a unique, special individual, including absolute acceptance of diversity with relation to culture, ethnicity, language, religion, race, gender, age, disability, sexual identity, and “readiness”.  A person is “ready” to develop a WRAP when they want to develop a WRAP.

4. WRAP is based on the premise that there are “no limits” to recovery, and that is reflected in all WRAP-related activities.

5. Every part of WRAP is totally voluntary.  The person who is developing the WRAP, decides if they want to do it, when they want to do it, how long they will take, what it will include, and who assists and supports them as they do it

6. It is clearly understood that the person who is developing this WRAP, is the only expert on him or her self.

7. The focus is on individual strengths and away from perceived deficits, no matter how these deficits are determined and who determined them.

8. The use of clinical, medical, and diagnostic language is avoided.  It is not helpful and is often harmful.

9.  It is understood that peer support enhances wrap activities.

10. The focus is on strategies that are simple, safe and free or cheap.

11.  Let me spend a few more minutes on the last of these Values and Ethics, that WRAP is trauma-informed. Back in 1988 I was beginning to do my studies of how people get well and stay well.   Over time I found out that, contrary to popular belief at that time, there are lots of people like my mother who have gotten well and stayed well for long periods of time.  She was definitely not the only one.  And I began, at that time, to change the focus of my studies from looking at how people cope from day to day to how people recovery and reclaim their lives.

When I first began talking about recovery, I was chastised.  I was told that people who have mental health challenges have “broken brains”, that they can never get better, and that they will need to let others take over control of their lives, and they will need to take their medications for the rest of their lives.  I was told that if my mother got well, she was never really sick.  This didn’t feel right to me.  Over time I became more and more convinced that these mental health challenges are the result of the bad things, the trauma that has happened to people.  I saw it in my own life.  I saw it in my mother’s life.   And I heard it from many, many other people as I asked them about it.  Years went by.  More and more people are accepting that mental health challenges are the result of trauma.  Researchers are still working on the studies that would prove the theory of the  “broken brain” but is has never panned out.  I’m not sure if it really matters.  If we can help people reclaim their lives, that is what we should be doing.

What does that mean about how we do things?

Trauma informed means that, when a person reaches out for help, comes to a WRAP group, comes to your agency or organization and asks for assistance and support, instead of blaming and punishing them, we ask, “What happened?” and “What do you need?” And then we listen, listen, listen–which takes us back to my mother, Kate, in that mental hospital.  She figured it out.  And she needed to get back her power.  And she needed to be validated.  And that is what we need to give every person, everywhere that reaches out for help and support.  Empowerment, validation and connection.

I get lots of e-mails from people all over the country and all over the world.  E-mail is a great tool for keeping us all connected in ways that weren’t possible just a few years ago.  I often hear distressing stories of how people live for years with terrible mental health challenges.  Although I do hear stories of helpful treatment, I hear far too many stories of people who have been badly treated when they reached out for help, or when they were coerced into getting help.  This troubling scenario often keeps people from getting the help they need.  Their quality of life is compromised.  Too often the despair overwhelms them and they end their own lives.  Or they die young, victims of the medications and treatments that were supposed to be so helpful.

I wish that everyone knew about WRAP (Wellness Recovery Action Plan).  It has been helpful to so many people.  The research has proved that it helps people to feel better and move on with their lives.  The problem is, far too few people know about.  I do the best I can to network it, and I now have lots and lots of people helping me.  But it is not enough.  Kids should know about WRAP, or how to take care of themselves from childhood.  Adults need to learn how to do the same thing.  It is my wish that when someone starts to feel badly, they look at the resources they have and figure out how to help themselves feel better.  If they reach out to an agency, or even a doctor for help, the help begins by working the person, step-by-step through the non-invasive, self-determined and empowering WRAP process.  The first questions should be about what the person knows help them to feel better.

I am often given credit for developing WRAP.  That is not true.  I did not develop WRAP.   In this article I will share with you how, according to my recollection, WRAP was developed, as I described it recently at a conference.  In the second part I will describe the values and ethics that have evolved around WRAP.  I think these same values and ethics should guide mental health service provision at every level.

On a cold winter day in northern Vermont in 1997 I was finishing up an 8 day training teaching almost 40 people, mostly people who had serious mental health issues, who had braved the wind-chill and the blowing snow, the skills and strategies I had learned through my studies.  I thought I had done a great job.  Then a woman stood up in the back of the room and said, “This is all well and good.  But I have been in state hospitals all over the country and I wouldn’t have any idea how to organize these things to make them work in my life.”  I will never forget that moment. I heard her, and so did all the other people who were there.  And we made a commitment that day to keep meeting until we had come up with some kind of a system so that people could organize the skills and strategies they had been learning into their lives.

We spent three full days deliberating.  Trying this idea and that idea.  We worked with sheets of newsprint paper across the wall.  Sharing ideas.  Discussing things.  Crossing things out.  Adding new things.  Until, after 3 days, it felt like we had something. And someone said, “Let’s call it the Wellness Recovery Action Plan–it has such a good acronym”–and so WRAP was born.

I am going to describe for you how that process went.   I think it is important. The structure that they came up with is the same structure that is WRAP today.  And the one that has been thoroughly studied, the one that is now evidence based and listed in the National Registry of Evidence-based Programs and Practices.

First they decided you have to have a list of all of the possibilities, all of the things you can use to help yourself feel better and help yourself stay well.  That became the Wellness Toolbox.  It included things like all the skills and strategies I had been teaching them all week–relaxation and stress reduction techniques, diet changes, exercise, focusing, arts, music–the list can go on and on and on and often does.  I have over 80 Wellness Tools on my list.  And it can keep growing and growing and growing as the person keeps growing and changing and as their needs change.

Then they agreed you need a list of those tools you need to use every day.  Call it the Daily Maintenance Plan.  It shouldn’t be too long so you can be sure to get it all done.  And then they said, before that you need at least a list of words that describe you when you are well.  You need a point of reference.  You could write a paragraph, or a book, or put in a picture, but a simple list of descriptive words would be fine. And then they said, after your list of things you need to do every day, you need a list of things you might need to do on any given day to avoid stress–things like buy groceries, make an appointment, keep an appointment, call a friend, clean your living space.

Then they said, what about those unexpected things that happen that get us off course–triggers they called them.  Things like someone being rude, or a big disappointment like losing a job, or seeing an accident, or an upsetting news story, or the anniversary date of a great loss.  We need to list them.  We can add to this list as we discover new ones.  Then they said we need an action plan so we don’t get overwhelmed when these things come up.  So, back they went to their Wellness Toolbox and came up with lists of possible things they could do to keep from getting overwhelmed or stressed or to get back to feeling OK after an unexpected event or trigger.  They felt that, because these things happen at lots of unanticipated times and in unanticipated places, they would need different options of actions they could take.  As you can see, a new way of proactive thinking is evolving here.  They were coming up with a structure that anyone could use to develop their own personal WRAP, their Wellness Recovery Action Plan.

Then they said there are times when we just start feeling worse and we don’t know why.  I could really relate to that.  Sometimes I just feel off.  I don’t feel like buckling my seat belt.  I don’t feel like answering the phone.  I have a slight headache.  I have a negative attitude.  I am self-critical.  They wanted to call this time Early Warning Signs.  This was all sounding so sensible to me. They said we should make a list of these early warning signs, and then develop another action plan of things they must do when they notice these signs.  For me personally these were the kinds of things I always used to ignore.  So taking action at this time was a new concept for me, a new way of thinking.   I put things on my list like getting at least on hour of exercise, working on either a drawing or quilting project, playing the piano for half an hour, and making my favorite Creamed Dried Beef on Toast for lunch.

Then they said that next they need to know When Things have Gotten Much Worse.   H’mmm.  Isn’t this the time when we should go to the emergency room or call the crisis team?  Or better yet, we could help ourselves around this and get ourselves feeling good again.  They wanted to call this section “When Things are Breaking Down”.  And again, it would start with developing our own individual list for what, personally, for us, indicates that things are breaking down.  Things like crying all the time, not eating at all, being unable to sleep for three nights, yelling at people you love, feeling like drinking alcohol or drinking alcohol, feeling like cutting or even cutting.  They acknowledged that these signs are very idiosyncratic.  What might be an early warning sign for one person might mean things were breaking down for someone else.    And then they said, we need an action plan–something we are committed to do even when we don’t feel like it, something that is very structured with few choices, something like what a good hospital day would look like in a perfect world. It might be 4 relaxation exercises a day, a half hour playing my trumpet, two-fifteen minute sessions of being listened to by a friend, one hour of walking or riding my exercise bicycle, and wearing my power outfit.

It took lots of haggling to get this far.  We had been warned that people wouldn’t be able to stay in a session for 15 minutes.  They worked on this from 9-4 for 3 days. They felt exuberant about it.

They said there is one more piece we need.  Given what we have already come up with, we think we can avoid a crisis where other people have to step in and take care of us.  But given the uncertainty of the future, we should include a Crisis Plan or Advance Directive.  Something that tells others what to do for us when we cannot take responsibility for ourselves.   Something we actually give to others.  All had been in agreement that this WRAP needed to be developed by the person who was using it and only they would determine what was in it and they didn’t have to show it to anyone else unless they wanted to.  But this part of the plan had to be different so others would understand it.

What they came up with has some of the usual “boiler plate” that is found in all Advance Directive forms.  But they also included some innovative sections that they felt were critical to their recovery.  One was a list of signs that indicate someone needs to step in and take over–to prevent well-meaning supporters from stepping in when you are already doing what you need to do to help yourself feel better.  It includes a list of those supporters–and a list of people who should not be included in any crisis responses.  It includes a plan so that they can stay at home or in the community rather than be hospitalized, it has a list of things that they would like others to do for them that would help them feel better, and a list of things that others should not do, things that would make them feel worse.

So that was WRAP.  And people were really happy about it.  They all left with a strong commitment to try it.  I did too.  I went home and the next afternoon, when my spouse went off to make maple syrup, I decided to write my WRAP. This is now March 1997.  I wrote my WRAP.  And I started using it.  I was amazed.  My own personal level of wellness moved ahead faster than I could have imagined.  I was thrilled.  I was getting reports from others who helped with the development of WRAP that they were getting the same results.

So I decided to share it at the next conference I was invited to speak to–the International Conference for Depression and Manic Depression.  When I got to the conference and realized there were lots of workshops on brain anatomy and the chemical formulation of pharmaceuticals, I cringed.  But I decided to go forward with my plan.  I presented WRAP to a full house.  At first people seemed incredulous.  But by the time I finished everyone was with me.  I got a standing ovation.  People said, “Finally something we can do to help ourselves.

Things happened quickly after that.  Everyone wanted WRAP.   I wrote the red WRAP book that describes it.  And those books went flying across the country and around the world.  We experimented with various formats for sharing WRAP and found that, while there are various ways people can learn about WRAP and use it in their lives, the one that works best is the WRAP group, facilitated by a trained facilitator.   So, working with a group of people who were committed to recovery, we developed the Mental Health Recovery and WRAP Curriculum and a five-day training protocol for training facilitators.  It has been enormously successful.

And Richard Hart from West Virginia convinced many others and me that we needed a post crisis plan.  We came up with one, checked it out with lots of people, revised it over and over again, and then, added it to WRAP.   It was what people felt like they needed to guide their way back to wellness, to again using their Daily Maintenance Plan, when they had been through the worst of times.

We now have thousands of facilitators around the world leading WRAP groups. There are 250 Advanced Level Facilitators who are teaching people how to be WRAP facilitators. There are mental health agencies and organizations in every state and in many  countries around the world using WRAP as the cornerstone of their wellness and recovery efforts.  Uncounted numbers of people are developing WRAP on their own using one of the many WRAP resources.

The Copeland Center and the Advanced Level Facilitators continue to train more and more WRAP group facilitators. People purchase training manuals, self help books, videos, audios and e-learning courses based on WRAP.  They love the MY WRAP and the MYWRAP Crisis Plan booklets.  Over 12,000 people visit our website every month.   And that is with no money from government or pharmaceutical companies.

But it is still not enough.  It won’t be enough until everyone who needs to know about WRAP or even self help can easily access and find their way to a rich and rewarding life.

Let me finish by telling you about a man, I will call him Wesley. Wesley is a very important person in my life.  He was in that group in northern VT that developed WRAP.  Wesley attended with a care provider.  He couldn’t come alone.  He was anxious and agitated and often had to go outside to regain his composure.  His speech was garbled.  He was very hard to understand.  He dressed in dark clothing, always wore a hat and kept his head done.  He avoided interactions with others.  I let him know that I was glad he was there–and I didn’t ask or expect anything of him.  His being there was enough.  A huge step for him.  After the group was over, I got a call from time to time from a care provider asking where there might be another group Wesley could attend.  Then I didn’t see him for a few years and lost track of him.  I was invited to a WRAP group graduation.  I enjoy those celebrations so, when I can, I go.  This time I was met by a man wearing shorts in a Hawaiian shirt, grinning broadly.  He said, “Hi Mary Ellen”.  I did a double take.  Then he said, “You don’t recognize me, do you.” And then suddenly, I did.  It was Wesley.  Wesley.  He had been to many, many WRAP groups and here he was. His speech was fine.  He didn’t need a care provider to bring him.  He stayed through the gathering.  Life is good for Wesley now.  Who would have ever anticipated that?

In Part 2 I will describe the Values and Ethics that have evolved around WRAP.

Principle # 1: Full disclosure: My thought is that psychiatric medications are best compared to painkillers: sometimes people need a short term temporary relief from their emotional distress. But the relief should come with full knowledge that the medication does not fix the problem, may worsen the problem, and should most likely be used short term. This complete disclosure might solve some of the problem, but maybe not, since opiod painkillers are theoretically prescribed with all of this information but still are one of the leading sources of prescription deaths.

My memorial collage for Al Henning who died of depression. If he had known of true mental health outcomes, he may not have given up.

Principle #2: Fully activated service recipients: Many enlightened doctors have told me, “I tell my patients all of those things and they still say, ‘I don’t care, just fix me, doc.’”  Here is Wilma Townsend from SAMHSA’s Wellness Initiative saying this tackling this passivity is very important. And several of my friends have talked about when they were viewed as passive patients like that but came out of that role.

This might even include doctors selecting patients who are ready to work on recovery instead of maintaining an illness role for the rest of their lives. This is the opposite of what is currently done, where doctors say, “Do what I tell you or I won’t treat you.” The message might be, “Question everything, including me. That’s how you recover.” Check out the National Empowerment Center’s archived article by Judi Chamberlin, “Confessions of a noncompliant patient.”

Here are a few other possible roles for truly medication optimization informed psychiatrists:

• If they learned how to help us honestly use medications as a tool and with an evidence base (short term only with full informed disclosure), they could be a valuable partner in handling emotional distress.
• People who are on many meds and need to taper slowly need help getting smaller and smaller doses prescribed. Currently, most of the famous medication critics are on speaking tour and don’t have time for patients. Doctors who learn this information and know how to find patients who want it will have a busy practice ahead of them.
• Doctors who have learned basic biochemistry can use this to analyze the true literature sources just as we have done and start publishing their thoughts and conclusions. It doesn’t take much funding to put together a report of 10 or so case studies. There’s really not much more than this in the medication withdrawal academic literature currently and we desperately use doctors to pitch in here. Or anyone else.
  

  My Cloudscapes collage as tribute to my friend and Olympic team training partner Brenda Day, who died from her fear of accessing mental health services.

• Doctors would be the best people to start UnDiagnosing Emotional Distress. People look up to the authority of doctors. The doctors I have heard talking about UnDiagnosing people have done a lot of good.
• It only takes 12 doctors to make a “board.” We could make a “Board Certified Medication Optimization” credential.
• Doctors can start advertising by how little medications they prescribe.
• Doctors can monitor their recovery outcomes and start advertising with those results. If the Open Dialogue program can get 82% recovery rates just by switching people from a disease model to a life situation model, than doctors who do this in their practice can start adding up some impressive numbers. It would only take 5 or so case studies of 20 or so patients with 80% recovery rates for someone to sit up and take notice. Especially if the survivor community was behind this doctor with some social media efforts.
• Psychiatrists could actually collaborate with psychologists again. In my whole career as a mental patient, this only happened once.
• Psychiatrists could hire peer specialists instead of nurses or physician assistants and give people their initial 3 consults with a peer. I bet this could cut their patient load in half because an educated peer could tell people they didn’t really need to see the doctor.

So, if we can figure out a way to ask psychiatrists for help in a way that doesn’t demonize them, we’d be a lot more likely to get some help. But, doctors need to listen to us, too.