Activism

This past year I have been working on turning my dissertation into a trade book. I am making steady but slow progress; print remains an important but slooooow media. My concerns around preventative psychiatric diagnosis and treatment motivated and propelled my dissertation, and they form the backdrop of my ethnographic study of the mad movement. My book will engage with these threats more directly and position them alongside the demands of the Mad Underground. The ideas of groups such as the Institute for the Development of Human Arts and NYC Icarus offer us some hope of diffusing the menacing time-bomb of surveillance psychiatry before it explodes. In the past few weeks, a few stories broke and I feel compelled to write about them in the context of my research:

Last month I bought an amazing gadget that is easily my most favorite of the decade. Before last month, I was barely aware this product category existed until I browsed the “Home Audio” section at PC Richards while looking for a replacement vacuum cleaner. I noticed that many of the receivers had ethernet jacks and also supported wi-fi, bluetooth, hdmi and USB. They boasted compatibility with internet audio streaming services, home media libraries, as well as any bluetooth-enabled media collection. Brought to all of us thanks to Free and Open Source Software. The Onkyo TX-NR626 looks almost identical to a stereo receiver you could have bought from Onkyo in the 80s and 90s. In fact, the chases is the same, save for a few extra buttons, and the form factors of the inputs/outputs in the back. A 95W per channel, supporting 7.2 channels, this sucker packs a meaner punch than my UWS apartment (or, more accurately, my neighbors) can stomach. But don’t let it’s outer shell fool you. But, the guts of this gadget have been updated for the 21st century, with flair.

When I graduated from Teachers College in ‘07, I donned the goofy ceremonial robes and walked with my classmates at the university-wide commencement.  I distinctly remember my astonishment when I heard the medical graduates recite the Hippocratic oath, right there, for all of us to witness. I remember thinking to myself that other professionals should be required to recite oaths too, as lawyers, teachers, journalists, and others all have the power to do great harm, but I suppose that medicine still occupies a unique place, as the power to heal is synonymous with the power to kill. I have arrived at a point in my dissertation research where I am now convinced that the psychiatric-pharmaceutical complex is in violation of the Hippocratic oath. I realize that this is a heavy accusation to make, but I now believe that the field has gone beyond simple, or even gross negligence, and has crossed the line into willful harm.

Last month the DSM-5 finally launched at the American Psychiatric Association conference. After 13 years and multiple delays, you can now pre-order your copy at Amazon (list price: $150), or just leave a helpful comment. The DSM-5 had been surrounded by controversy, and not just by the usual suspects. Allen Frances, the chairman of the DSM-IV task force, just published a scathing critique of the processes and outcomes of the DSM-5 efforts: Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life. Frances has been sounding the alarm about DSM-5 for over a year, raising concerns over the current committee’s secretive methods, conflicts of interest, expansive diagnostic inflation, and the reduction in reliability (the odds of two doctors agreeing on a diagnosis) that DSM-5.  Over 50 Mental Health organizations and almost 15k people signed a petition demanding reform of the DMS-5 drafts. Although this scale of controversy would be scandalous in many fields, the APA barely flinched. The DSM-5 task force moved some of the most troubling diagnoses into the appendix, renamed a few others, skipped a round of efficacy trials to meet their deadline, and otherwise proceeded with business as usual. I have to say my jaw dropped when I learned that the National Institute of Mental Health (NIMH), and it’s $1.5B/year of funding,  was “re-orienting its research away from DSM categories[!]”. The official NIMH announcement, Transforming Diagnosis, posted by their director Thomas Insel on April 29th, was picked up by a wide range of science media (NYTimes, Koplewicz @ The Huffington Post, Chris Lane @ Psychology Today, Psych Central) with headlines such as “NIMH Withdraws Support for DSM-5” and analysis that this was a “kill-shot” for DSM-5. What struck me as most shocking was that the NIMH basically came out and said that the the Mental Illnesses defined in the DSM are social constructs - “the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.”  Ironically, the anti-psychiatrist’s arguments have prevailed, although for the wrong reasons. As I interpret this statement, NIMH isn’t denying the existence of mental illness, just our current ability to agree on its nature and manifestations. But, yes, the current definitions are social constructs and continue to defy attempts at validity. Ha! But, before anyone gets too excited, what the NIMH proposes may turn out to be scarier than the system in place. This research is representative of the direction that the NIMH is heading: Suicidal behavior is a disease. Here, disorders will be sliced and diced into their constituent elements, which conform more readily to the instruments and models that scientists (neurobiologists and geneticists) already have at their disposal. I’ve been convinced for a while that within the next 5-10 years the Pharma-Industrial complex was going to invest enough research money to find a definitive neuro-imaging/molecular/genetic/biochemical marker for mental illness (that is, once the marker cast a wide enough net).  However, I wasn’t expecting them to turn the tables and redefine mental illness according to what they could already test. Pretty sneaky. The saddest part of this whole debacle is that instead of seizing this moment of crisis as an occasion to bring together disparate stakeholders - from patients, to consumers, to survivors, to advocates, to caregivers across a range of backgrounds - and work together to develop a new language and paradigm for understanding human suffering and emotional crisis, the NIMH has doubled down on scientific authority. Soon they will be short-circuiting all debate by pointing at pretty false-color pictures and lab results. There will always be a value judgement when evaluating the boundaries of normal experience/behavior, and no scientific instrument will ever be able to tell us when someone’s experience/behavior is deviant, without human interpretation. As the disability right’s movement says: Nothing about us, without us. Somehow, for all of the NIMH’s noble intentions, I have a bad feeling that the treatment side of mental health care is poised to become more oppressive. We’ll likely continue to see the growth of anti-psychotics for everyone, and the pre-cog, pathologizing of risk through predictive and preventative care that will explosively expand the diagnostic reach. This conversation just took a sharp turn past the rhetoric of the last few decades. I hope the psychiatric resistance is following along closely, and updating their arguments accordingly.

The corner of the internet that I hang around in has been mourning all weekend with tributes, eulogies, and heartfelt sharing about the untimely death of Aaron Swartz. I don’t remember meeting Aaron personally, but I have heard him speak, am friends with many of his friends, and was very aware of his work and activism. I am furious and sad to hear that he took his own life. I have lost a few friends and relatives to suicide, and years ago wrestled with some of these demons myself. Honestly, I am not sure how I feel about politicizing this moment. There are strong arguments on both sides. Being persecuted by the state is horribly stressful and isolating, and I also feel strongly about many of issues that Aaron advocated for. But, I am concerned about responses that reduce and simplify Aaron’s complex decision. This post about suicide reporting on the internet raises the concern that sensational reporting causes an increase in suicides in the wake of the coverage. What I want to contribute to this conversation is an important message to any geeks, hackers, or activists that are struggling with isolation, alienation, depression, or even suicidal thoughts. You are not alone. And, sometimes it takes alot of courage to decide to stay alive. For the past 10 years, radical mental health groups like The Icarus Project have been developing support materials for activists that provide alternative ways of thinking and talking about mental health. Take a peek at their forums, publications, podcasts, documentaries, and more. They have really helped so many people rewrite their own narratives, and connect with others struggling with similar emotions. In the past year or two especially, I have seen more and more geeks/hackers who are attempting to organize around these issues, eliminate stigma, and provide peer-support outside of the mainstream psychiatric paradigm. Geeks, hackers, and activists are especially suspicious of authority, and habitually question systems of power.  They are justifiably mistrustful of psychiatry, but need a place to turn to for support. I don’t know the state of all of these projects, but they seem like a good place to pick up the conversation for how can we take better care of each other and provide kind of compassionate support we all need so horrible tragedies like Aaron’s, Ilya’s and countless others can be averted in the future.

On my recent journey to the West Bank I learned about a wonderful Muslim holiday called Eid al-Adha.  Eid is a 4 day, family-focused holiday, celebrated with gift-giving and great feasting. The holiday commemorates the binding and non-sacrafice of Ishmael (since, in the Koran, it was Ishmael not Issac who was bound), and the Covenant between Abraham and the Lord. When I learned about Eid, two questions came to mind:

It’s back to school season, and if you’ve glanced up from your smartphone while walking the streets of New York City, you are sure to have noticed a new campaign that is sweeping the city’s billboards and phone booths.

Children’s Mental Health MATTERS

Where Science Meets Hope for Children’s Mental Health

  Who could possibly object to children’s health and well being? The Child Mind Institute, whose “Billboard is now at Penn Station!” is a recently founded non-profit “committed to finding more effective treatments for childhood psychiatric and learning disorders, building the science of healthy brain development, and empowering children and their families with help, hope, and answers.".  According to their website, they don’t accept funding directly from pharmaceutical companies. Anyone want to help me start cross-checking Pharma’s ties to their staff and board? In a gushing profile of the organization and its founder, Dr. Harold Koplewicz, the New York Times reported last summer that they are awash in millions of dollars of funding, have 14 clinicians on staff, and a former editor of the New York magazine is editing their website. Koplewicz is also the go-to doc for helping celebrities and the 1% “manage” their children. The story glosses over Koplewicz’s messy departure from NYU to start the Child Mind Institute. “[Koplewicz’s] main mission in life, he contended, is to remove any stigma from mental illness among children and teenagers, make it merely something to be managed and overcome as it was with dyslexia or attention deficit disorder before it.” In his critique of Marcia Angell’s two-part series in the New York Review of Books on the epidemic of mental illness Koplewicz stakes out his position clearly: “In the meantime, we have patients, in our case children and adolescents, who desperately need help. These children may be out of control, overwhelmed by anxiety, dangerously aggressive, disorganized in their communication, floundering in school. We need to help them. Medications, often along with behavioral therapy, can have a transformative effect.” These are the symptoms that Koplewicz wants concerned parents to be vigilant about patrolling: Child Mind Institute Symptom Checker. To me, Koplewicz reads like a raving megalomaniac, and his devotion and conviction are more frightening than the fictitious evil masterminds he claims are posited by Psychiatry’s critics. I get the sense that he genuinely believes his own spin. He worships at the alter of “objectivity”—“We would like to see objective research catch up with the clinical realities but can’t wait until that happens. Furthermore, falling back on pure non-pharmacological treatment is not the better alternative, since these treatments have rarely undergone objective evaluation."—and the Child Mind Institute is outfitted with “the latest in brain imaging technology”. Koplewicz wields a formidable rhetoric, but is almost a caricature of the scientific realists in the Science Wars. This post raises more questions than it answers. Who is funding the Child Mind Institute? Why now? How can organizations developing compassionate languages to describe mental diversity and difference, like The Icarus Project, respond to these campaigns? What roles do “objectivity” and “risk aversion” have in shaping the dynamics of this controversy? Should anything be stigmatized? UPDATE 4/22/2013: I  tweeted about this ages ago, but realized that the following tidbit never made it into this post. If you visit the wonderful Drug Industry Document Archive and search for ‘Koplewicz’, you will find that he was one of the co-authors on the now infamous Paxil 329 study that cost Glaxo Smith Klein $3 BILLION in settlements in 2012. The Paxil 329 study tried to cover up the finding that not only does Paxil not work in children, but that it makes them more suicidal than a sugar pill did. The Dept of Justice found the study to be misleading and fraudulent.  I am pretty sure that the study was ghost written, but I think that makes his credibility even worse. See also: Bossewitch, Jonah (2011). Pediatric Bipolar and the Media of Madness “Drugs and Media: New Perspectives On Communication Consumption and Consciousness”, eds. MacDougall, R. C., New York : Continuum: 2011 Special thanks to Dyan Neary for helping out on this post.

Last weekend I went down to Philly to Occupy the American Psychiatric Association’s yearly conference (#OccupyAPA). I joined the protests on Saturday, attended the APA on Sunday, and participated in the Radical Caucus, hosted by a group of psychiatrists attending the conference on Sunday night. The weekend was overflowing with information and emotion, and I when I finishing unpacking it all I might just have a dissertation (or, at least a fat chapter). This year’s APA was especially controversial since the DSM5 is scheduled to be published in 2013. Over a decade in production, and already delayed more than once, the DSM5 is, in a word, disastrous. Many psychiatrists, including the lead author of DMS-IV, have spoken out vehemently against both the processes and outcomes of DSM5. [CALL TO ACTION: The final round of public comments on DSM5 is now open, until June 15th, 2012.] The controversies around DSM-5 coupled with the energy of Occupy Wall Street, brought activists and the media out in force. The Philadelphia Inquirer ran a front page story on the protests (Former patients protest psychiatric convention), New Scientist covered the protests alongside their DSM coverage (Label jars not people), The Grey Lady covered and opined the DSM disaster (though not the protests), the BBC was filming, NPR was recording, and at least 2 documentary film crews (Cause of Death: Unknown), and a multitude of citizen journalists captured and reported on the actions. Saturday morning kicked off at Quaker Friend’s Center, with a powerful lineup of psychiatric survivors firing up the protesters with speeches, songs, and changes. Hundreds of protestors marched through the streets of Philly to the main convention center, many wearing psychopharmacomania t-shirts, and holding creatively maladjusted signs. The protest culminated in a label rip, staged outside of the main convention center (The Alchemist makes an appearance at 2:25, warning that psychiatry is a threat to itself and to others).: The Icarus Project represented, and we were thrilled to distribute physical copies of the eagerly anticipated Mindful Occupation to protestors, psychiatrists, and the media. The protests were a rush, but for me, the surprise thrill was gaining admission to the APA conference itself on Sunday. I attended a few talks and a poster session, irrefutably detailing and confirming my research and predictions. Then I hit paydirt. The vendor exhibition hall. HOLY FUCK. Highlights included: Future Blockbuster? Anti-psychotic action in 3D: A live psychiatrist, hired by AstraZeneka, delivering their powerpoint presentation (she only squirmed a little when I asked her if this was the drug that killed 3-year old Rebecca Reilly): and devices that only psychiatry can dream up uses for:             The Radical Caucus deserves a follow-up post of of its own. For starters, Brad Lewis’ brilliant breakdown seamlessly applies the hard-fought lessons of academic theory to the trenches of emotionally-loaded, real-life conflict. I have much more to say about this meeting, but first I need to track down who swallowed the comment that I posted in response to Brad’s post ;-). For now, I’ll leave you with a teaser for next year’s APA: “Pursuing Wellness Across the Lifespan” - I guess that covers kids, the elderly, vets, prisoners, pregnant women, and whoever else is ensnared by DSM-5’s diagnostic nets (including the appendix).

Our Kickstarter campaign to fund the publication of Mindful Occupation: Rising up Without Burning Out is in full swing.  We have made our financial goal (w00t!), and all additional funds raised will go towards additional printings.  Thanks to everyone who contributed and helped spread the word.  Let’s finish this campaign with a bang. Please share widely: http://kck.st/yAmbya

A guide for participants in the occupy movement to strengthen our psychic, soulful and heartfelt contributions. #mutualaid #peersupport

My friend Dr. Rasmus Nielson sends me the best leads. Or, the worst ones, considering they are irresistible calls to action.  He sent me this one days before it was due, and I scrambled to pull-off this abstract over the weekend. Below is the call for papers, and my response. Now all I need to do is deliver on the promissory note I just wrote sometime in the next 3 months. Thanks Rasmus. ;-)