A letter to the judge presiding over my upcoming AOT hearing:
I will try to keep this as short as possible, but when you are trying to get your life back from the control of a community mental health center which imposes Assisted Outpatient Treatment on you (or, as some people call it, simply AOT, although it is also called Civil Outpatient Commitment) in which one is forced to take drugs or face a return to the state hospital, I believe that all the relevant issues should be addressed.
There is some history to all of this, which I will cover briefly.
When I finally decided to get off psych drugs several years ago (long before these present circumstances), I decided to take certain precautions. I wanted to withdraw from drugs cautiously and wisely, not rashly.
Just to clear up one point, I’d like to emphasize that I was only getting off one psych drug. I’d always instinctively avoided being on more than one drug, which I sensed might cause problems. I didn’t want to be wondering if one drug was working but another one wasn’t, or if the other one was working and the first one wasn’t. I didn’t want to have to deal with the kind of confusion that comes from adjusting to one drug and then having it turn out that the other drugs were the problem. I wanted one drug, and one drug only, that would come as close as possible to solving my problem, and no more than that. I was not thinking at that time of cross-medication “side effects” — the interaction of one chemical with another that then causes even more problems that then demand even more drugs from your psychiatrist (who is usually only too happy to supply more drugs: that’s what gives their job is largely composed of these days). I have since heard from or read about many, many people for whom it did cause problems. “The drug to fix the drug to fix the drug to fix the drug” is what I usually call it, although it is technically called “polypharmacy” (“supplying multiple drugs”) in the “mental health” business.
So I wasn’t dealing with polypharmacy. I was taking just one drug, and so I had only one drug to get off — Saphris.
Saphris is actually a notoriously difficult drug to get off of, or, for that matter, even to tolerate in the first place. I have read, although I forget where, that approximately 60% of the people involved in the clinical trials for Saphris dropped out of the trial, when a drug usually doesn’t make it through the FDA drug approval process when more than 50% of the participants drop out of the trials, but I can’t confirm that at this moment. People who are trying to get off Saphris frequently complain about terrible sleeplessness, agitation, and increased hallucinations, and I know that I experienced sleeplessness and agitation myself at one point when I decided to go without Saphris for a couple of days. So, after looking around at different sources on the subject of psych drug withdrawal, and with the help of all the reading I’d done, I decided to reduce my dose by one quarter every six weeks. Some people say that, as a general rule, you should reduce by 10% a month or by 10% every six weeks or so, but I didn’t personally feel that was necessary. For one thing, I was on a fairly small dose, and for another I had been told by my psychiatrist, after I prodded him for the information, that your neurons adjust every six weeks to the level of whatever drug you may be on. I concluded that every six weeks, while monitoring myself closely, I could probably change what I was doing safely, and if there were any problems I could simply go back up on my dose.
It might not have been the most absolutely conservative approach, but it seemed as safe as I was likely to get while still getting it all over with. Even with that schedule, under the best of circumstances, it would take six months to get off a relatively small dose of a single drug. And since I had decided not to confuse the effects of one drug with those of another drug, I decided not to reduce my Saphris at all during the very brief time (two months) when I was using insulin (both going onto it and then coming off of it) as a bridge to help get rid of my high blood sugar (a side effect of many so-called “antipsychotics”) as my body was adjusting to my new exercise and diet regimen. In all, it took 9 months for me to get off Saphris, and I never experienced any difficulties in that time that I was aware of.
But there were other precautions I wanted to take as well.
One possibility that occurred to me was that, once off drugs, that I would indeed “go crazy” again or that I might start hearing voices again. Obviously enough, this struck me as something of a problem, not only because I could appreciate how bad it all might become, but because I was now almost thoroughly opposed to engaging with psychiatry or taking any more psych drugs, even if there were problems — and yet is that what I was willing to take. I had read many things about certain drugs that put me off the whole idea of drugs or psychiatry, which included several facts that, from what I can tell, they never actually tell you about about in a psychiatrist’s office when you are first going through the experience. So-called “informed consent” is, in actual practice, virtually nonexistent in a psychiatrist’s office.
One thing that I have never heard talked about, for instance, was the incredibly high recovery rates that were being experienced by psychotics around the world, or at least by those who weren’t in a country where the “mental health field” was largely controlled by the drug-driven agenda of Big Pharma and the modern “biological psychiatry” establishment. Psychiatry in the United States at this time is essentially controlled by what are called “biological” psychiatrists, who ascribe mental difficulties like psychosis or mania or schizophrenia to problems with the actual physical brain, to the organ itself, and not to one’s own life experiences. As a result, one’s life experiences — such as experiencing child abuse, or rape, or being bullied as a child, or losing one’s job or one’s spouse or seeing all of one’s friends or family killed in a war — are essentially discounted from the equation. A kind of lip service is paid to these experiences, it’s true, but in the end what really matters is the drugs, thus implying that your physical brain, and not your actual life experiences, is what really matters.
There are even some people who consider the whole practice of modern biological psychiatry to be a form of political oppression. When your problems are blamed on your brain, for instance, rather than taking into account an abusive childhood or, say, living in poverty and a dangerous neighborhood, all of which might be caused (as there is more abuse in impoverished environments) by the lack of work opportunities or a decent wage that are not being supplied by the capitalist corporations that control nearly our whole economy — well, when you defocus from someone’s environment and experiences like that, and just blame their brain for their problems (which is what you are essentially doing when you persuade or force them to take chemicals rather than address the actual circumstances of their lives), you are, actually, engaging in a form of social and political oppression. By distracting from the real problems, which we could address if we wanted to — things like abuse, poverty, etc. — you are actually reinforcing the status quo. You are supporting a kind of system of abuse and a kind of system of social oppression, in other words.
Furthermore, biological psychiatry says that the odds are that your life won’t significantly improve and that you will never “recover” from any “condition” you might have if you aren’t put on drugs. But if you don’t address the problems that come with any psychological, behavioral, or environment issues you might have, your life is unlikely to change in any significant ways over the long term, no matter what kind of drugs you use. Drugs often provide a short-term benefit that usually lasts only a few weeks or a few months — I wouldn’t deny it — but they often bring a whole host of other problems along with them over the long term, and while things may improve for a while, the real problems are never solved. Biological psychiatry is not only not solving the problems; in fact, it is perpetuating them by encouraging us all not to address the real issues.
One thing that I was not told about, for instance, was “metabolic syndrome,” in which you rapidly put on lots of weight, you become sluggish, your blood pressure goes up. So does your cholesterol, and you may very well develop diabetes. There is a reason why schizophrenics tend to die between 20 and 30 years younger than other people. I was also not told about “malignant neuroleptic syndrome” in which one loses one’s higher mental functions, such as: pleasure in any activity or other things at all, no spontaneity, no energy to keep up your end of a conversation, and largely no imaginative or rational thought of one’s own. This is followed by a kind of social death, because you are unable to act normally in the presence of other people. There is a reason that I think of my time on my first antipsychotic — eight long years, which I willingly undertook — as being years of social isolation, of being in a sort of empty and meaningless solitary confinement. And this is to say nothing of the other potential side effects, which can be terrible.
To take this all a step further, the World Health Organization did a couple of very important studies of the longer-term outcomes of psychosis (they called it schizophrenia, but I’ll forgive the error: almost everyone labels what is simply a passing psychosis as “schizophrenia”) that were intended to show the difference between the outcomes of so-called “schizophrenics” in “developed” and in “developing” countries, and they were most likely thinking that they would show the superiority of modern, biological methods in dealing with it all. The differences that they found, actually, were quite different. Here I would like to quote a passage from Mr. Robert Whitaker, the author of Mad In America (a scientific and social history and analysis of schizophrenia [psychosis] treatment) as well as the editor of the Mad In America website, from whose work I have learned a great deal. He has won numerous awards as a journalist, including the George Polk Award for Medical Writing and a National Association for Science Writers’ Award for best magazine article. In 1998, he co-wrote a series on psychiatric research for the Boston Globe that was a finalist for the Pulitzer Prize for Public Service. His book Anatomy of an Epidemic won the 2010 Investigative Reporters and Editors book award for best investigative journalism. Here are his words:
As I wrote in the first edition of Mad In America, my interest in this subject occurred in a very accidental way. In the summer of 1998 I stumbled onto an unusual line of psychiatric research, which I reported on for the Boston Globe. In order to study the “biology” of schizophrenia, American scientists were giving the mentally ill chemical agents — amphetamines, ketamine, and methylphenidate — expected to heighten their psychosis. That seemed an odd thing to do, particularly since some of the people recruited into the experiments had come stumbling into the emergency room seeking help. Then, while reporting on that story, I bumped into two studies in the medical literature that really confused me. In a 1994 article, Harvard Medical School researchers had reported that outcomes for schizophrenia patients had worsened during the past twenty years. Schizophrenia patients were now faring no better than they had in 1900, when various water therapies — needle showers and prolonged baths — were the preferred treatments of the day. Equally perplexing, the World Health Organization had twice found that schizophrenia outcomes in the United States and other developed countries were much worse than in the poor countries of the world. Suffer a psychotic break in a poor country like India or Nigeria, and chances are that in a couple of years you will be doing fairly well. But suffer a similar break in the United States or other developed countries, and it is likely that you will become chronically ill.
Now, before I learned of those outcome studies, here is what I knew was “true”: antipsychotic medications were “like insulin for diabetes,” and these drugs had dramatically improved the lives of people diagnosed with schizophrenia. Yet, the studies by the Harvard researchers and by the World Health Organization belied that story of progress. And so I wondered: Why had schizophrenia outcomes worsened in the past twenty years? How could it be that long-term outcomes were no better today than in 1900? And why did those diagnosed with schizophrenia fare so much better in India and Nigeria? Or, to put it another way: Why should living in an a country with rich resources, and with advanced medical treatments for disorders of every kind, be so toxic to those who are severely mentally ill?
And what is the real meaning of what is being talked about here? In a so-called developed country, you will be subjected to biological psychiatry, with its drugs and its hospitals and its whole “system of care.” That is, where the “chemical imbalance” theory (and other theories like it, similarly based on biology, like “gene susceptibility,” all of which have been debunked over and over) are promoted in the media and by the government and which therefore almost exclusively control everything having to do with the “treatment” of psychosis and schizophrenia, and where drugs are promoted as being “like insulin for diabetes,” you are most likely to become disabled on a permanent basis and to show very poor chances of ever “recovering” if you are on these drugs, which at one point were literally advertised as “chemical lobotomies” and “chemical restraints.” But in a “poor” country, the odds are that you will be living with an extended family — with a real system of community support all around you, in other words — and where your social contacts do not usually interpret what you are going through as an “illness” but may very well interpret it all as either a spiritual experience or as the result of what has happened to you in your life, well, then your chances of “recovery” after a fairly short time are quite high.
In fact, your odds of “recovering” fully, by the measures that the World Health Organization put in place, were about 10 times as high after a short period of time in a “poor” country (44% in three years), where they just took care of you themselves, than they were in a “developed” country (4% recovery rates) where psychiatric “professionals” with all their drugs would most likely take control of your life. And the World Health Organization — largely funded by rich, “developed” countries that have an implicit agenda to promote their own corporations and business models around the world — does not have any incentive to make Big Pharma or biological psychiatry look bad.
That’s the kind of thing that makes you sit back and think for a while. I know that I have — deeply, seriously, and with caution, though others may not see the depths with which I have done so. And the conclusion I have come to is that any person who does not want it should not have treatment forced on them. As the United Nations Special Rapporteur on Torture reported and the United Nations Convention on the Rights of People with Disabilities declared, forced psychiatric treatment is torture — and torture is defined by the person it is done to, not by the people who are doing it, no matter what good they may think they are doing you.
As C.S. Lewis wrote:
Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience. They may be more likely to go to Heaven yet at the same time likelier to make a Hell of earth. This very kindness stings with intolerable insult. To be “cured” against one’s will and cured of states which we may not regard as disease is to be put on a level of those who have not yet reached the age of reason or those who never will; to be classed with infants, imbeciles, and domestic animals.
I would like a better way to take care of my own health care than the choices currently being imposed on me by community mental health centers, which involve forcibly injecting me with a drug that I do not want and making me take a daily pill that I do not want to take. Furthermore, and perhaps most important of all, I have committed no crimes or social disturbances even when I was psychotic, and a “conditional discharge” (AOT) from the state hospital is little more than a form of probation or possible imprisonment in a mental hospital that is imposed on you by people who do not understand either the history of psychology or of psychiatry with its chemical lobotomies or even of what you are actually experiencing if you do happen to enter a psychotic state — states which have been proven to be transient over and over and over again.
And lastly, there is this. There are millions upon millions of people in the United States who choose, despite their doctors’ warnings, to sit around and eat McDonald’s hamburgers and fries or to sit in front of the TV, getting no exercise, while scarfing down potato chips and beer. These people are doomed to an early death, and yet no one is placing themselves in the position to intervene. The FDA, after all, does not show up at your house and force you to choose a different diet. If I choose to drink, which I sometimes do, or if I choose to take my chances and possibly endure another period of psychosis before it all finally resolves itself, there is absolutely no reason that anyone should appoint themselves as my moral guardian and make my own health care choices for me. This is a free country, after all, and my choices are my choices. And that is all that I have to say on that subject.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.