Tags: APA, conversion therapy, Dr. Robert Spitzer, DSM-5, mental health, psychiatry, stigma
Meet Dr. Robert Spitzer.
This man has recently done something no other psychiatrist [to the best of my knowledge] has done: when confronted with an insurmountable critique of a view he had previously defended vehemently as “scientific,” he admitted he was wrong. Publicly.
And then he said he was sorry.
Well done, sir.
On Monday, the New York Times ran a story about Spitzer’s public apology for the publication of a 2001 study claiming to prove that so-called “reparative” or “conversion therapy” is effective – some of the time, with highly motivated individuals — in enabling homosexual individuals to “change” their sexual orientation to heterosexual.
I believe I owe the gay community an apology for my study making unproven claims of the efficacy of reparative therapy. I also apologize to any gay person who wasted time and energy undergoing some form of reparative therapy because they believed that I had proven that reparative therapy works.
– Dr. Robert Spitzer; Professor Emeritus of Psychiatry, Columbia University [emphasis added]
This was big news nationally – for homosexuals, gay advocates, and also various religious and “family”-oriented groups who have been using that “Spitzer 2001” citation for years to promote conversion therapy.
But I think this news is bigger than big (huge, even!) for the mental health advocacy community. If we can understand Spitzer’s reasons for apologizing, and his path to doing it so publicly and with such grace, we will be one giant step closer to eliciting other much needed apologies in psychiatry, to bridging the gap between psychiatric professionals and patients. A “truth and reconciliation” between psychiatry and its survivors is a real possibility, if more apologies are forthcoming.
Why did he change his mind?
On Monday, Spitzer gave a brief interview on NPR’s Talk of the Nation. When bluntly asked, “Why did you change your mind?” he replied:
I changed my mind because I had been bothered for several years about it, and then when I was visited by Gabriel [gay journalist who had undergone conversion therapy]… and he described what it was like to be in therapy when he really didn’t get any benefit from it at all… and I just realized that I had to make – explain to people why I think I made a big mistake.
– Dr. Spitzer on NPR’s Talk of the Nation
Later guests on the show discussed some of the more “bothersome” aspects of the study. It was rushed to publication and wasn’t “peer reviewed,” its data was not – really could not be – validated, as it was based entirely on self-reporting over the short term.
But more important were the philosophical and societal consequences of the study’s publication. The legitimization of “conversion therapy” (which indirectly treated homosexuality as pathology)…
1. Was used by certain groups to perpetuate the stigmatization of homosexuals under the guise of “helping” them:
And what it [Spitzer’s study] allowed the Christian right to do is put a more benevolent face on anti-gay prejudice… Instead of angry denunciations from the pulpit, the Christian right could then say that they were actually caring for homosexuals, that they wanted to help gay people and that they wanted to help cure them.
– Gabriel Arana, gay journalist and activist
2. Caused various homosexuals to internalize fundamentally negative, pathologized views of themselves
It [conversion therapy] stopped me from accepting myself, it lowered my self-esteem. As I said earlier, it made me see myself as… as a leper without a cure. And encouraging – I mean, and the premise of therapy is that there is something wrong with – fundamentally and innately wrong with the person, and if you can’t change it, then you’re sort of left with this disease that has no cure. And I think that… affected [me] very much as a young adult.
– Gabriel Arana [emphasis added]
Regardless of your stance on homosexuality, I think the parallels to the broader debate about psychiatry are clear.
Psychiatrists publish studies and papers in academic journals (about mental illness as brain disease, for example, or childhood bipolar disorder as a widespread and “undertreated” phenomenon, or the existence of such things as “dysphoric mood disorder,” “psychosis risk syndrome”, et al.) that are highly flawed, but touted as science. This pseudoscience is used to legitimize various practices — like pharmacological intervention as first line treatment for mental distress, forced outpatient therapy, the DSM itself — that pathologize a variety of human experiences that simply ARE NOT pathologies in the strict sense of the word. They’re not physical maladies of the body diagnosed by blood tests or other physical symptoms, their causes are not empirically known, they’re not like diabetes. Countless people are taught to internalize the belief that a “biochemical imbalance” in the brain causes them to be fundamentally different from humanity – truly lepers without a cure – and only a semblance of normality is possible through pharmacology, symptom suppression, and denial of self.
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 … 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.
– psychiatric survivor and activist Laura Delano, in a speech at “Occupy the APA”
Psychiatric survivors are in a position very similar to that of the gay community after the publication of Spitzer’s 2001 study, except for the fact that many scholarly publications (including the DSM), faulty clinical trials, “treatment advocacy” organizations, and public institutions are replicating the same kind of errors and prejudices, day after day. An unrelenting campaign of stigmatization and “for your own good” interventionism.
An apology is long overdue.
If he’s in the mood for apologizing…
Maybe Dr. Robert Spitzer might like to reconsider some of his other scholarly publications. The most of famous of which is… the DSM-III.
Technically Spitzer is not the author of the first edition of the Diagnostic and Statistical Manual to include the “modern” mode of classifying mental illnesses by their symptoms – and leaving causation completely out of the question. But he is almost universally acknowledged as the main architect of that third and pivotal edition (I guess appointing yourself head of all 25 development committees will do that for you) and certainly was its defender for years.
When I say what I’m about to say, I’m not being sarcastic or vindictive – I’m being sincere.
Maybe Spitzer (and his colleagues) are nearly ready to apologize to psychiatric survivors at large. Maybe the time for truth and reconciliation has come.
Spitzer is reaching the end of his career and perhaps even his life (he suffers from late stage Parkinson’s Disease). Priorities are changing. Misgivings long buried are being brought to the surface and addressed. An interaction with a “survivor” of the policies born of his conversion therapy research was the catalyst for a change of heart, publicly declared.
Has the time for truth and reconciliation come? As psychiatric survivors continue to lift their voices and share their stories, to graciously and meticulously expose the flaws in the pseudoscience, psychiatry as a profession has a chance (just as Spitzer did) to explore buried conflicts, half-acknowledged truths that have been hidden from the light of day for years. Will they acknowledge the damage that has been done, will they apologize, will they move forward in partnership with psychiatric survivors?
Some may say it’s unlikely, but because of Spitzer’s actions, we know at least that it is possible.
Tags: biopsychiatry, brain disease, diagnosis, DSM-5, New England Journal of Medicine, psychiatry, schizophrenia
1 comment so far
I heard the rumors of a fight, and I came a-running.
This morning, I read [here] that the following inflammatory remarks were published in this week’s New England Journal of Medicine:
… [Only when psychiatrists address] psychiatric disorders in the same way that internists address physical disorders, explaining the clinical manifestations … by the causal processes and generative mechanisms known to provoke them … will psychiatry come of age as a medical discipline and a field guide [the DSM – Diagnostic and Statistical Manual] cease to be its master work.
– Paul McHugh, MD and Phillp Slavney, MD in the NEJM [emphasis added]
Damn, that’s cold. And did I mention it was published in the New England Journal of Medicine (!), which is “one of the world’s most prestigious medical journals… cited in scientific literature more frequently than any other biomedical journal”? All kinds of doctors, clinicians, and practitioners read this thing!
A big deal.
Sounds like the authors are saying mental illness is fundamentally NOT like diabetes, that psychiatry as a discipline will continue to suffer from its immaturity and crippling inferiority complex (“we wanna be scientists, too!”) as long as diagnosis doesn’t rest on a firmly established foundation of physical pathology, and that the DSM is a poor substitute for that kind of a foundation.
Them’s fighting words. Words that might make the NEJM readership think twice before handing out diagnoses and their accompanying pharmacological interventions like the proverbial candy.
Don’t believe every rumor you hear
Having matured a bit from my high school days of running directly to join the ring of kids chanting “fight, fight, fight!”, I decided to get a little context. Who are these guys -– researchers? psychiatrists? some other kind of doctors? — and what does the rest of their NEJM editorial say?
“These guys” are two psychiatrists, professors at the Johns Hopkins School of Medicine. Paul McHugh, the lead author, is a rather famous one. He’s attended Harvard, designed a famous cognitive test often used as a dementia/Alzheimer’s diagnostic tool (a mere 11 questions!), served on the Presidential Council of Bioethics under GW and on a lay panel put together by the Catholic Church to look into the abuse of young boys by priests – none of these things being very high recommendations in my book. The two, together, have written a popular paperback for the general public entitled The Perspectives of Psychiatry which takes the biopsychiatric/disease-based approach to mental health.
And their editorial? It starts off very nicely with a critique of the DSM-delineated “field guide” method of diagnosis – the main problem being that clinicians no longer think too long or hard about causation. This promotes a “rote-driven” method of treating folks, and as the authors so rightly state “identifying a disorder by its symptoms does not translate into understanding it.” Or treating it effectively, if long-term studies of schizophrenia outcomes are any indication.
But things go sour real fast as we get to the “what’s to be done about it” part. We simply must establish causation for psychiatric disorders, and – guess what?—the authors have already done that!
The causes of psychiatric disorders derive from four interrelated but separable families: brain diseases, personality dimensions, motivated behaviors, and life encounters.
-McHugh et al.
They have also helpfully sorted out some common psychiatric disorders into the four families, or “causal perspectives”:
Right there, in the NEJM (remember – prestigious medical journal read by everybody), we’ve got schizophrenia neatly categorized as “brain disease.”
I diagnose thee… Flipfloppers!
Contrast the NEJM editorial with the polite phrasing the authors used in the aforementioned co-authored The Perspectives of Psychiatry, chapter 6:
The continuing failure to identify a particular cerebral pathology or pathophysiology in these disorders [manic depression and schizophrenia] undermines attempts to proclaim them as diseases with complete confidence. They remain mysteries in the sense that a confirmation of their essential nature is lacking…
– authors Paul McHugh, MD and Phillp Slavney, MD in The Perspectives of Psychiatry [emphasis added]
And yet they feel comfortable, only a few years after these words were published, with proclaiming schizophrenia as a “brain disease,” without providing any citations for new, groundbreaking research whatsoever. Clearly this “DSM critique” is not what it seems.
Middle way protestors all the way
As it turns out, these guys are total middle way DSM protestors — the only thing they’d like to fight is the bad public image of the DSM, not the institution of psychiatric diagnoses masquerading as science, and all of the poor treatment that goes along with such posturing (symptom suppression via pharmaceuticals, coercive treatment, et al.).
According to McHugh and Slavney, “no replacement of the criterion-driven diagnoses of the DSM would be acceptable; clinicians are too accustomed to them.” Rather, the only solution is for everyone [clinicians, researchers, families, patients] to embrace their causation groupings – and for that to be coded and billable, too, one can only presume.
In no other field would you continue to reach for an admittedly blunt, ineffective tool simply because it’s “what people are used to.” Surely there are some other possiblities?
I believe that there is another way – instead of fitting people and their “symptoms” into predetermined boxes, we could communicate with each unique individual, offering our support and encouragement (help) when it’s wanted, and offering our respectful non-interventionism and acknowledgement of the humanity of the suffering individual when our “help” is neither helpful nor desired.
I believe there is life after the DSM – and I’d like, as a society and a community, to live it!
Tags: anatomy of an epidemic, antipsychotics, intramuscular medication, Janssen, long-acting injection, Risperdal, robert whitaker, schizophrenia
In honor of Robert Whitaker’s recent kick-ass article beautifully re-affirming the central premise of Anatomy of an Epidemic (namely that anti-psychotic medications worsen long-term outcomes for patients, making schizophrenia into a chronic, lifelong disease when in its natural state it is episodic; and therefore that patients who refuse treatment with antipsychotics are scientifically justified in doing so), I thought we might launch our own little expedition into the stormy seas of antipsychotic/neuroleptic discourse.
I’m steering us straight towards the tempest, towards the ever-blurrier line between “compliance,” “adherence,” and outright “forced treatment,” towards a history of Orwellian language shift that simply can’t seem to shake the truth.
Long-acting injections of antipsychotic medication
Long-acting injections are monthly, time-released, intramuscular injections of antipsychotic medications. They figure prominently in current “assisted outpatient” therapeutic practice (ie, forced drugging outside the walls of the psychiatric institutions), and are being heavily promoted by drug companies who see expiration dates on patents for oral antipsychotic medications looming in the near future or already arrived. Can the pharma marketing machine succeed in making LAIs the next wave of antipsychotic blockbuster drugs?
It’s going to take a serious makeover. You see, long-acting injections have got something of a “bad image” in the press, and in the hearts and minds of the people. Perceived as brain-altering drugs violently administered to unwilling subjects, clinicans’ last resort to enforce adherence to an un-agreed-upon reality [treatment plan], a hideously efficient way for pharma to make a buck or two [hundred].
But is this really a case of “bad image”, of misperception… or is it an accurate appraisal of long-acting injections’ intended and fully acknowledged clinical applications?
As clinicians we struggle on a daily basis with patients who do not want treatment because they do not perceive that medication helps or because they do not conceptualise their experiences within a medical illness framework. Long-acting injections have often been used to enforce adherence in patients who do not or will not take medication; they can be a mechanism allowing clinicians to take control.
-Richard Gray, RN, PhD*in “Antipsychotic long-acting injections in clinical practice: medication management and patient choice” [emphasis added]
According to systematic reviews approximately 40–60% of patients with schizophrenia are known to be partially or totally non-adherent to oral antipsychotic medication. Long-acting injections are indicated where medication adherence is a cause for concern. Thus it is argued by some that it might seem reasonable to consider such injections for approximately half of patients with schizophrenia.
– authors Maxine Patel, Mark Taylor and Anthony S. David** in “Antipsychotic Long-Acting Injections: Mind the Gap” [emphasis added]
Yep. We had you guys all wrong. This isn’t about forcing patient adherence to clinicians’ treatment plans, and it certainly isn’t about expanding the market for LAIs.
Funny thing. “Long-acting injections,” when first introduced in the 1960s, were referred to as “depot injections” … but the name acquired a strong stigma and had to be changed:
Many proponents of LAIs [long-acting injections] have attempted to dodge this [image problem] by rejecting the term ‘depot,’ which was perceived to be stigmatizing, in favour of ‘long-acting injection’ … this was partly an attempt to move away from stigmatizing stereotypes, and also to promote therapeutic optimism for a population for whom hope can be all too scarce.
– Patel et al in “Antipsychotic Long-Acting Injections: Mind the Gap”
As late as 2008, long-acting injections of Risperidone were still being called “depot” injections, but by 2009 articles like the one cited above made clear that this terminology had been abandoned.
But they couldn’t shake the stigma
Not only that, but serious, data-based challenges to the forced administration of long-acting injections –- and, more fundamentally, the existence of any clinical value for antipsychotics whatsoever — are rapidly multiplying. As one example:
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 [citation here] 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?
-Robert Whitaker, author of Anatomy of an Epidemic, in the aforementioned kick-ass essay
From pharma’s perspective, another Orwellian language shift is needed. Time to reset the dial of public opinion on long-acting injections… and so I give you the newest name for an old terror:
That does sound better! It doesn’t make me think of needles. Doesn’t even sound like an injection… sounds more like a “muscle relaxer,” only more intra.
I first saw the term a few weeks ago in Dr. H. Steven Moffic’s delightful little Psychiatric Times blog entitled “Is it time for Re-institutionalization?”
Recently, I was asked to write a request to possibly extend the outpatient commitment of a patient of mine. What for, I said to myself? This would be a waste of time because he had not exhibited any more dangerous behavior, was taking care of himself, and was compliant with his intramuscular medication. However, when as part of the ongoing monitoring of my patient’s improvement, I asked him to rate on a 0-10 (best) scale how well the medication was working, he said “0”. When I asked why, he said it was because he didn’t need the medication. Uh, oh, I thought. Could this be Anosognosia?…
There’s no way he’ll be committed longer, but will he stay on the medication voluntarily? Without it he’d surely relapse into psychosis and possible dangerousness. If he then went inpatient again, would he only stay a few days, not enough to address his ideas about the medication? It didn’t help enough the first time around.
-Dr. Steven Moffic
But it’s cropping up elsewhere, too – in the academic literature, and in drug company advertising materials, of course. You can even see the shift in brand names as new antipsychotic injections are approved over time; the earliest approved LAI, Janssen’s Risperdal, is frequently referred to as LARI [Long-acting Risperidone Injection], while the more recently approved Zyprexa injection’s official brand name is “Zyprexa Intramuscular.”
I forecast the increasing encroachment of the term “intramuscular medication” into the official, APA/pharma-approved, “therapeutic” language, until our fears of “long-acting injections” are a half-forgotten nightmare that no longer sees the light of day.
Or we could insist on calling a spade a spade.
So-called “antipsychotics” are nothing of the kind (they’ve actually been shown to cause psychosis), and are much more appropriately referred to by their first given name, neuroleptic, which literally means “brain damage inducing.” Why? Because that is what the research proves, over and over again, they do.
From now on let’s choose names that accurately describe the items to which they’re attached. For example, “rose” = a pretty flower that smells good. A few other examples:
Intramuscular Medication = Neuroleptic (brain damage inducing) Injection
Non-compliant Patient = Conscientious Objector to the Chemical Takeover of His Mind
That sums it up pretty clearly, doesn’t it?
* (Oh, and by the way, Richard Gray has received funding and/or fees from AstraZeneca Pharmaceuticals, Bristol-Myers Squibb, Janssen Pharmaceuticals, Eli Lilly, Otsuka Pharmaceuticals and Pfizer.)
** (And it should come as no surprise that the authors have been reimbursed for attendance at scientific conferences and have received consultation fees from Janssen-Cilag and Eli Lilly, received investigator-initiated grants from Janssen-Cilag and Eli Lilly, have worked on two clinical drug trials for Janssen-Cilag, and have received hospitality and advisory or speaker fees from AstraZeneca, Bristol-Myers Squibb, Eli Lilly and Janssen-Cilag within the past 5 years.)
Dystopian Dreams of a World Without the DSM 05/15/2012Posted by ALT in DSM-5, Patient Rights and Advocacy, Philosophy/Spirituality.
Tags: APA, biopolar disorder, diagnosis, DSM-5, eugenics, mental illness, psychiatry, schizophrenia
A world without psychiatry’s “Bible,” the DSM [Diagnostic and Statistical Manual]. I can see it now…
In this world, much like our own, there is still suffering. There is still poverty, crime, crushing sadness, despair. There is still violence. Regrettably, there may even still be some people who choose to take their own lives, preferring death over the pain of the moment.
But things are a helluva lot better in this world. Not perfect, mind you. Nevertheless a far more hospitable place for humans to be (in distress or not).
Not a utopia
I don’t promise you a utopia, because I have learned that utopian thought is always a trap. It inevitably leads to State supervision of, well, everything. We’ve got to maintain that perfect agreement about what constitutes the perfect order, right? At any cost. Moreover, utopian thought requires the mechanization (and consequently dehumanization) of the culture, the community, the human beings involved therein.
A feature of nearly all utopias has been addiction to elaborate social machinery like schooling and to what we can call marvelous machinery. Excessive human affection between parents, children, husbands, wives, et al., is suppressed to allow enthusiasm for machine magic to stand out in bold relief…
All machines are merely extensions of the human nervous system, artifices which improve on natural apparatus, each a utopianization of some physical function. Equally important, the use of machinery causes its natural flesh and blood counterpart to atrophy, hence the lifeless quality of the utopias. Machines dehumanize, wherever they are used and however sensible their use appears. Yet the powerful, pervasive influence of utopian reform thinking on the design of modern states has brought utopian mechanization of all human functions into the councils of statecraft.”
– John Taylor Gatto in “The Lure of Utopia”
So I give you, instead, some dystopian dreams of a world without the DSM.
In this world…
Psychiatrists, as a profession, en masse, have admitted: WE WERE WRONG.
“We shouldn’t have done it,” they will humbly concede. “We shouldn’t have insisted it was a fact that the ‘disorders’ we outlined in the DSM were objective, scientific, distinct pathologies (just like diabetes!) when we had virtually no proof of that. We shouldn’t have told our patients that they had ‘faulty genes’ or ‘faulty brains,’ that they were doomed to suffer chronically, for the rest of their lives, from the effects of chemical imbalances of neurotransmitters in their heads when we literally had no way of measuring balances of neurotransmitters [in the brain] in the first place, no way to establish a baseline for what is ‘normal’ and what is not.
And we certainly shouldn’t have partnered with drug companies, we shouldn’t have accepted their bribes, their promises of prestige and honor, allowing them such tremendous influence over the development of the diagnostic criteria. We shouldn’t have turned a blind eye to the terrible, terrible harm the pharmaceuticals they were so enthusiastically peddling were doing to our patients, to our communities. We should’ve looked further than the drug company-sponsored ‘research,’ we should’ve listened to what our patients were telling us, the facts that were staring us in the face, if only we were willing to take off the blinders so kindly provided us in our years of PhD training in pharma-sponsored schools and research hospitals.
Folks, we were wrong, and we’re deeply sorry for the harm we’ve caused. We’d like you to send back your DSMs (don’t worry, we’ll cover the postage), so that we can dispose of them in a safe and secure manner.”
(Dumping them down the drain, so to speak, simply won’t do.)
Now, as my significant other likes to say, there are three kinds of apology:
Type One: “I’m sorry you didn’t like it, but I fully intend to do it again.”
Type Two: “I’m sorry it happened, but it wasn’t really my fault.”
Type Three: “I’m sorry I did it, I take full responsibility for my actions, and I will make sure not to do that again.”
This will be a full-on, Type 3 apology, and it’s going to force all psychiatrists to ask of themselves some very serious questions about their profession, their practice, their beliefs about humankind. The self-proclaimed “soul healers” are going to do some critical thinking and some soul searching (like this). With humility and a greater sense of empathy, many (but probably not all) will emerge on the other side, repentant, contrite.
We move forward, having abandoned the purely “biopsychiatric” approach to mental illness, with a renewed commitment to seeing mental distress and madness for what they are (instead of trying to fit them to a biopsychiatric model that was flawed from the start, given its roots in pharmaceutical marketing campaigns, NOT actual observation of the process).
We move forward.
Our cultural narrative about mental distress has fundamentally changed.
Once this monumental apology has been issued, the books sent back, the labels redacted, “bipolar disorder,” “schizophrenia,” and “dysphoric mood disorder” won’t exist anymore as such. [oh wait, I guess Dysphoric Mood Disorder doesn’t quite exist yet… well, give it time, give it time.]
But there will still be people convinced of the coming apocalypse, walking circles around the city at night with visions of destruction surrounding them. There will still be children throwing terrible tantrums day in and day out. There will be racing thoughts, deep depressions, panic attacks; there will also be euphoria, epiphanic realizations of the oneness of humanity, creation, deep outpourings of love and spiritual healing.
Yes, there will still be “extreme states of consciousness” – some of which will be quite distressing to the people who experience them.
But our cultural narrative explaining the presence of such extreme states will have changed dramatically. When they are no longer catalogued “symptoms” of a fearsome “disease” that some people get and some people don’t, but just one part of a vast spectrum of human experiences possible to all humankind, it will no longer be feasible to adopt an us and them mentality.
“Mental illness” as the “bad genes” of “unfit stock” manifested? Not anymore. We weed out our old eugenical ideas about “the mentally ill,” roots and all (and that includes the idea that there exists a class of people called “the mentally ill” and another class called “the normal” and that the one is fundamentally different from and dangerous to the other).
We understand that “it” (extreme states of consciousness and diasgreements with consensual reality) could happen to any one of us – and that if it does happen, each and every human deserves to be treated with compassion, respect, lovingkindness… like this.
In practical terms, we don’t give folks forced “intramuscular medication” (time-released injections), we don’t electroshock people against their will, we don’t chain them, humiliate them, perform experiments on them, stigmatize them, silence them, lie to them “for their own good,” condemn them to a slow, drug-induced death, brand them again and again as a “danger to society,” something fundamentally different, other. We don’t do any of these things because we refuse to violate anyone’s humanity — and we recognize that when we do this to someone else, we open the door to having it done unto us.
People are able to define, for themselves, their subjective experiences of reality.
Without a so-called “scientific” definition of mental illness spelled out in the DSM, readymade for the force-feeding, people will be left with a blank page on which to write out their own truths. Truths about our society, our world, and what is “acceptable” in these contexts. Truths about what it means to be well, right-minded, living right.
Those who reject the DSM are already doing this:
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?
-Sascha Altman DuBrul, in his essay “Mad Pride and Spiritual Community: Thoughts on The Spiritual Gift of Madness”
Maps of wildly diverse terrains, pages and pages of difference! What’s right for me may not be right for you – and that’s a beautiful thing. As you can see, this is no utopia. We don’t have to agree about what “perfect order” is [and then single-mindedly enforce that order everywhere]; we don’t even have to strive for perfection at all! We just have to be honest, creatively living our lives each day, mapping out our mental, emotional, and spiritual geographies, all the while respecting our fellow humans as they do the same. And most importantly…
We offer our compassionate, “un-professional” support to our fellow human beings in distress (and out of it!).
This is crucial. We humans weren’t made to be lonely – not in joy or grief, and certainly not in madness. We long to share our experiences, to bond, to connect, to feel the lovingkindness of someone else’s attention, care.
So in distress and out of it, we can follow as an example the standard of care provided by luminaries like Loren Mosher and John Perry . In distress and out of it, let’s be with each other, without judgment (diagnosis) or manipulation (“for your own good interventionism”), without “professional opinions” (self-fulfilling prophecies of chronicity and doom) or prescriptions (forced care).
Let’s make maps together; let’s be fellow geographers of the human condition. Allow for grief in response to the deep sadness that is inevitably a part of life. Allow for terrible fear, at times, and unbelievable joy. Allow for madness as a transformative process, when it occurs; the birthing of a new consciousness. Allow a safe passage, in loving company, through difficult times. Allow our fellow human beings to emerge, on the far side of their extreme states of consciousness, “weller than well.”
We move forward. We don’t look back.
Maryanne Godboldo — mother honored for defending her daughter’s right to remain psychiatric drug free 05/12/2012Posted by ALT in Children's Mental Health, Pharmaceuticals.
Tags: CCHRI, human rights, Maryanne Godboldo, Risperdal, Thomas Szasz
1 comment so far
Some of you may remember from a year or so ago the story of Maryanne Godboldo’s 10 hour stand-off with Child Protective Services and the police in Detroit, Michigan, who wanted to remove her child from the home. They brought a SWAT team, and a tank (!)… all because this mother had weaned her daughter Ariana off of Risperdal after seeing the side effects it caused and was pursuing other, non-medication, therapies to address Ariana’s needs.
This brave woman defended her daughter’s rights — first at home against the excessive force brought by the government — and later, in court. She won, and was recently honored by the Citizen’s Commission on Human Rights International [CCHRI— conglomeration of mental health activists* who strongly idenfity with Thomas Szasz] for her courage with a “human rights award.”
Here’s a brief film they put together documenting Godboldo’s story:
And here’s an excerpt from the acceptance speech she gave upon receiving the award back in February:
I vowed that I would never let anyone harm my child under any circumstances. My mother protected me and I wanted to do the same for my child. So I began to research how to legally fight Child Protective Services.
The amount of helpful information I found was phenomenal. At that point, I knew I was not alone in this battle. I just had to do my part and Ariana had to do hers,and that was to hold on.
I believe that Ariana and I had to go through this to expose a dark, ugly, foul secret. The selling, kidnapping and holding hostage, as well as the unnecessary drugging of our children.
We as parents must never stop protecting our children. It is our responsibility to care for them. So we must read, research, and do whatever we must to help our children. No one is going to take better care of our children than we are.
We must prepare ourselves to do so and let the Lord continue to implement His plan.
*Note: They were co-founded by the Church of Scientology, too… Szasz himself is not and never has been a member of or affiliated with the Church itself. He also authorized this statement about the Church of Scientology’s involvement in the CCHRI:
Scientologists have joined Szasz’s battle against institutional psychiatry. Dr. Szasz welcomes the support of Jews, Christians, Muslims, and any other religious or atheist group committed to the struggle against the Therapeutic State. Sharing this battle does not mean that Dr. Szasz supports the unrelated principles and causes of any religious or non-religious organization. This is explicit and implicit in Dr. Szasz’s work. Everyone and anyone is welcome to join in the struggle for individual liberty and personal responsibility — especially as these values are threatened by psychiatric ideas and interventions.
Psychosis as a plastic process 05/10/2012Posted by ALT in Psychosis.
Tags: Dr. Paris Williams, neuroplasticity, psychosis, recovery, Rethinking Madness, schizophrenia, stroke
Neuroplasticity – the idea that our brain is constantly changing, rearranging itself, adapting to the environment it is presented with and optimizing performance based on ever-changing stimuli, that it is, in short, a living thing — is finally getting some attention. Though the concept has been around for, literally, centuries, mainstream neuroscience, stuck in its Cartesian ways, has been doggedly insisting that the brain is like a machine, with specified parts that function in an unchanging way. “Once brain-damaged, always brain-damaged,” they say. [Hmm… sounds familiar, doesn’t it?]
Never mind this couldn’t possibly be true.
This article describes just two of countless examples of a damaged brain reorganizing itself, regaining (or re-developing, to be more accurate) the lost functions in the process. First, we read about Cheryl, who suffered complete loss of her vestibular function. The vestibular function controls balance – without it, she felt like she was perpetually falling. This went on for almost 10 years before a neuroplasticity-based therapy helped her regain almost all of it. [Incidentally, this brain damage was the “side effect” of a drug she was prescribed after a routine surgery.]
Next, there is Pedro, who suffered a stroke so severe it left him unable to speak and with half of his body paralyzed. Through tremendous effort, Pedro and his son George designed a rehabilitation program that allowed him to slowly, ever-so-slowly re-learn nearly all of the skills he had lost. After a year, he was able to resume his job and worked their happily until retirement. After his death, doctors did an autopsy of Pedro’s brain, only to discover a massive legion that had never healed – yet he had regained all of his lost functions. His brain must have reogranized itself, redistrbuting the lost functions to areas unhurt by the lesion.
Doesn’t sound like something your standard machine could do. Which most neuroscientists these days are begrudgingly conceding.
Of course, there are those desparate few who cling to the old ideas (Cartesian doctrine dies hard)…
[Lots more to be learned about neuroplasticity from this book, which I have just finished devouring and highly recommend.]
The Brain is Plastic, not Elastic
Note that the term is neuroplasticity. Not neuroelasticity. What’s the difference?
Something that is elastic can be stretched, but it will always come back to its original shape. Like a rubber band.
Something that is plastic can also be stretched, but it then maintains its new shape. And though you could manipulate it to return it to a semblance of the old shape, it would not be exactly the same… it never could be.
I imagine that the brain activity is like Play-Doh… if you start out with a package of Play-Doh that is a square, and you then make a ball of it, it is possible to get back to a square. But it won’t be the same square as you had to begin with… Even when a patient with a neurological or psychological problem is ‘cured,’ that cure never returns the patient’s brain to its preexisting state.
– Neuroscientist Alvaro Pascual-Leone, in the book The Brain that Changes Itself [emphasis added]
If the brain is plastic, the brain’s processes are plastic, too
Research has already shown this to be true for some processes. Take, for example, memory. Every time we recall an event, our brain literally rebuilds the memory.
I can recall vividly the party for my eighth birthday. I can almost taste the Baskin-Robbins ice cream cake and summon the thrill of tearing wrapping paper off boxes of Legos. This memory is embedded deep in my brain as a circuit of connected cells that I will likely have forever. Yet the science of reconsolidation suggests that the memory is less stable and trustworthy than it appears. Whenever I remember the party, I re-create the memory and alter its map of neural connections. Some details are reinforced—my current hunger makes me focus on the ice cream—while others get erased, like the face of a friend whose name I can no longer conjure. The memory is less like a movie, a permanent emulsion of chemicals on celluloid, and more like a play—subtly different each time it’s performed. In my brain, a network of cells is constantly being reconsolidated, rewritten, remade.
– Neuroscience journalist Jonah Lehrer, in this article (a very, very good read!)
Which brings me to my main point:
Psychosis is a plastic process
It seems that one of the fundamental premises of mainstream psychiatry is that the goal of treatment is to return the patient to the state of mind he or she was in before the psychotic break. “Get back to normal,” they say.
Not only would this truly be impossible (given that the brain is more like Play-Doh than a rubber band), but it may, in fact, be counterproductive to aim for it. Psychosis can better be viewed as a transformative process, out of which a healthier human is born, “weller than well,” as they say.
In the new book Rethinking Madness, psychiatric survivor and clinician Dr. Paris Williams eloquently illuminates the point:
In the life sciences, it is common to think of living organisms as existing in a state of homeostasis, which is an organism’s resistance to change and its ability to maintain a stable internal environment. Mainstream psychology and psychiatry evidently draw from this model when attempting to return a psychotic individual to a state that is as close to his or her pre-psychotic state as possible. It has been suggested, however, that it is actually more accurate to consider organisms to be living in a homeodynamic state rather than a homeostatic one. The term homeodynamic suggests that “once a new stressor is encountered, the organism never returns to its previous dynamic state, but establishes a new dynamic balance appropriate to this newly integrated experience” …
In the context of psychosis, then, this concept suggests that it may be terribly problematic to attempt to return someone to their pre-psychotic condition rather than to support them in integrating their anomalous experiences as they move into an altogether new way of being in the world, an idea that is in very close accord with the recovery research. … [therefore] my working definition for full recovery is: “The condition of having achieved a homeodynamic balance in which the overall distress (and not necessarily the anomaly) of one’s subjective experiences is the same or less than that which preceded the psychosis.”
-Dr. Paris Williams in Rethinking Madness: Towards a Paradigm Shift in our Understanding and Treatment of Madness [emphasis added]
Ultimately, it’s up to each one of us to define “recovery” and “wellness” for ourselves – but I kind of like what Dr. Williams has done with the terms.
Click here to read a preview of the book Rethinking Madness.
DSM-5 round three: can other cries of protest be heard over the clamor of “middle way” voices? 05/09/2012Posted by ALT in DSM-5.
Tags: APA, conflict of interest, DSM-5, therapeutic state, thomsa szasz
The third and final “draft” of the DSM-5 has been posted, and the various work group members (you remember them, don’t you?) have asked for feedback from the general public. It’s open for comment until June 15th.
I was going through the new draft, checking up on some of my favorite controversies over diagnostic criteria, their intersection with work group member conflicts of interest and pharmaceutical dollars (there being no shortage of any of these things), and thought I might share a few developments.
First, some good news
[Though let me first state that the ultimate good news would be if this thing never went to press at all, if the whole paradigm of labeling, pathologizing, and dehumanizing embodied by this “bible” (aptly named, as it is certainly more of a quasi-religious text with a life of its own that one must both believe in and claim as his own (my schizophrenia, my bipolar, my depression) than a scientific manual containing objective facts) were abandoned. If we let people describe, by themselves and for themselves, their experiences, their realities; if we abided by the Universal Declaration of Mental Human Rights and Freedoms…
But if it’s going to go to print, it would be great if the damage were minimized… so I refer to the following as “good news items” despite my caveat.]
- “Psychosis Risk*” (or “Attenuated Psychosis Syndrome”) – a proposed disorder characterized by “strange thoughts” or hallucinations at least once a week with the potential to become psychotic — will not be included as an official disorder in the DSM-5. This will likely prevent untold thousands of “preventative” prescriptions of anti-psychotics, self-fulfilling prophetic progressions into “chronic schizophrenia” (a phenomenon that really only exists in large numbers where folks are psychiatrized the American way), etc. A very good thing.
- “Mixed Anxiety Depression” isn’t going to be in there either. This was another label that would have vastly expanded the boundaries of what is considered pathological, what might be remedied pharmacologically.
- Rather, they (and quite a few others), will be included in the newly invented “Section III” a sort of purgatory where diagnoses that “need more study” will be named, and tentatively described, but [I gather] will not be official. Whatever that means.
- And a small victory for lovers of acronyms everywhere: our beloved “NOS” [Not Otherwise Specified]remains in this draft of the DSM. For awhile there all the “NOSes” had been transfigured into “NECs” [Not Elsewhere Classified], which simply doesn’t have the same ring to it, and isn’t nearly as punny…er, funny.
And now the bad news
This baby IS still going to press, whether we like it or not. Moreover, it’s the middle way detractors’ critique that is being heard and addressed by the media and the APA itself, as is all too clear in this third and final draft.
Middle way protestors (like Allen Frances, for example) are against the DSM-5 in particular, criticizing the development process, the addition of so-called “unscientific diagnoses,” financial conflicts of interest of the developers, etc.
The idea being that we simply need a better process for creating this thing. And that the botched development of the DSM-5, which will result in flaws that could’ve been avoided with more rigorous procedures, is a risky business because it might turn the tide of public opinion against the very institution of the DSM; which would be terrible because we need some kind of DSM in order to treat mental illness at all.
But there’s another camp, led by people like Paula Caplan – I like to think of it as the true DSM detractors. Instead of being against the DSM-5 in particular, this camp (including myself) is against the institution of the DSM, period. Instead of arguing that the DSM-5 is marginalizing, stigmatizing, unscientific, it argues that the practice of diagnosing people itself is all of these things and worst of all… dehumanizing!
In the final draft of the DSM-5 , the Middle Way Critique is addressed, or at least acknowledged, but the Work Group Members stubbornly persist in expanding diagnostic criteria and opening the door for more and more pharmacological interventions (“first line treatments,” they say, mostly in their private publications), their conflicts of interest and grant monies often all too obviously influencing this process.
What can we do about it? Who knows what can be done to stem the rising tide of the “Therapeutic State,” armed with an ever more expansive and “inclusive” definition of mental illness!
But we can start by leaving a strongly worded comment or two on the DSM-5 website about what this “bible,” and the pseudo-scientific/religious beliefs it outlines, has done to our society, our humanity.
*Yes, I linked to an Allen Frances article. Please don’t take that as an endorsement, however!!