A few years back, I had the opportunity to produce a short film about Freedom Center – a grass roots organization of those identifying as ‘survivors of psychiatry.’ Most had been given serious psychiatric diagnosis, and served time in the grips of psychiatric incarceration. Nonetheless, they were banding together around their shared experiences, and ideas about how we could, or should, support people in extreme mental states.
My interest in making movies does not stem from the allure of Hollywood’s glitz and glam. Rather, a sense that real life is often more interesting than fiction. And so my path intersected with Oryx Cohen and Will Hall, co-founders of Freedom Center.
Freedom Center had been offered an opportunity to tell the story of its work, with a short film as centerpiece, on Forbes.com: Global visibility for a community organization that started out meeting in church basements. Hoodies up, voices hushed. On short notice and no budget, we pulled together their story, and the piece became one of the top-rated news items on Forbes for several days running. Exposure to these powerful “survivor” stories, coupled with the overwhelming response on Forbes, awakened me to my part as a filmmaker in making them part of our cultural dialogue.
In the years since meeting Will and Oryx, I have had the good fortune of immersing myself in the world of ‘alternatives to mainstream psychiatry.’ I might also call it the world of ‘alternative research on the science of living.’ What I discovered were countless individuals who have been told their extreme states, or emotional distress, was a disease of the brain, from which they would never recover. The irony is that most of these individuals are now living full lives, holding jobs, starting families. Many have gone through the painful and dangerous process of coming off the psychiatric drugs that were doled out to them as if they were insulin for diabetes. Moreover, they were paying it forward by supporting others with similar experiences. In short, I witnessed proof that the standard of care for mental health had done, in many cases, more harm than good. And found myself at ground zero of a decades-old human rights battleground.
The upshot is that these ‘alternative’ organizations were more than just an option for the people I found myself shoulder-to-shoulder with; they were reframing the message people had been given by a theory that had failed, both as science and as a means of helping them. They informed people that they were not genetically broken, dysfunctional human beings. That with support they could move forward with their lives. Many came to view the experience commonly referred to as “mental illness” or “psychosis” as a natural response to life circumstances; one that should to be understood, journeyed through. And by doing so, individuals could take value from these experiences, rather than view them as symptoms of a hypothetical illness.
Along the way, I have been privileged to hear hundreds, maybe thousands, of people’s stories. I undertook, with the help of Oryx and others in the movement, to produce a feature length documentary, Healing Voices. The film is in production and we expect to have a completed product around the end of this year. I created marketing content for the various ‘Recovery Learning Communities’ in Massachusetts, and saw how the idea of ‘recovery’ differed amongst the (at the time) six organizations funded by the Massachusetts Department of Mental Health; ranging from activism in western Massachusetts, to more mainstream out east. I worked on a film about the medical model with Sera Davidow. Another, developed with Brenda Vezina, about the causal relationship between trauma and psychiatric diagnoses. I spent time in South Dakota working with a group of ‘peers’ on media production, exploring the power of storytelling. Conferences. Board work. Personal research, and the writings of Carl Jung, John Weir Perry, and Robert Whitaker. All the while I paid close attention to the portrayal of “mental health” and “mental illness” in schools and the media. I noticed the almost complete lack of discussion about the role of psychiatric drugs in incidents of extreme violence. My oldest daughter was instructed, in a high school health class, to “pick one of these mental illnesses” and write a report about it. I hope she doesn’t lose points due to the necessary lack of scientific citation.
This leads me to the Open Paradigm Project. Less than six months ago, I had the even greater fortune to start working with a small group of fellow producers who had spent a chunk of time traveling and shooting at various conferences. Interviews with notable figures in the movement. Survivor stories. A mixed bag of ‘Mad Media’. Immersing myself in the now 200+ hours of raw footage was like swimming in a sea of the subconscious. I was swallowed whole by the white whale, consumed with the energy to put my still-developing abilities to the best use I could think of. Open the Paradigm.
A fair amount of the footage has been made available on Mad in America, mainly interviews and conference presentations. Much of it is being made available to others who can put it to good use. Our first full production, a documentary about the Hearing Voices movement filmed at the 2012 World Hearing Voices Congress in Cardiff, Wales, premiered exclusively on the site over three weeks ago, and is now available on the Open Paradigm YouTube channel. But the wrinkle of this story comes next. So I digress.
In February, the Open Paradigm Project received an indirect invitation by the White House to provide testimonials for a planned “National Dialogue on Mental Health”. Our understanding was that the White House was open to ‘stories of hope and recovery by non-medical means.’ So we dropped everything we were doing, choosing to produce as many of these testimonials as we could muster, and offer them to this campaign as free content, in the hope that this proposed “National Dialogue” would include at least a representative sample of the perspectives we’ve come to believe in. We figured, if they were going to open a door, we should try to drive a truck through it.
So that’s what we did. We delivered to the White House a sample of people – clearly capable, eminently fulfilled – saying that psychiatry had not helped them, and in fact had become the obstacle they overcame on their way to a fully realized life. And we haven’t heard back. The “National Dialogue” seems to have fallen off the radar, at least for now, but I expect that if and when you do hear about it the message will be that “treatment works”, and, “let’s not stigmatize people with psychiatric diagnosis”, or, “if you see the signs of mental illness in your troubled friend or classmate, make sure they seek help” to get a diagnosis, take medication. The same old story.
I hope I’m wrong. And I’m not suggesting that people don’t experience periods of extreme difficulty, and that they should not seek help. But help can, and always has come, in many forms – many of them simple, human, gentle, kind and benign – while the evident risk of psychiatric intervention or so-called “treatment” has become the elephant in the room.
Where does that leave us? Well, we’re sitting on an ever-growing mountain of testimonials, filmed with high production value, primarily featuring individuals who have shed, or rejected, psychiatric diagnosis. Family members who regret their well-intended choices. Psychiatrists searching to rediscover the humanity of their work. And the hits just keep coming. We started by dialing into the “recovery” community, and now the rest of the community is dialing us. “Can I tell my story?” “Can you come to Cleveland/North Carolina/Japan? The Vatican?”
As we sat waiting for the White House to make its move, discussing how best to put this content to work, the controversy around the release of DSM-5 heated up. National Institute of Mental Health director Thomas Insel made a move away from the DSM (“lack of validity… patients deserve better”), which was later ‘qualified’ in a joint statement with American Psychiatric Association incoming president Jeffrey Lieberman. Then DSM-5 task force chair David Kupfer’s admission of an absence of biological markers of mental illness (“we’re still waiting”). Even so, the NIMH’s Research Domain Criteria (RDoC) and President Obama’s BRAIN initiative have announced they will continue to look for solutions in biology – an approach that, despite decades of acknowledged failure, Insel proposes to be only “ten years away.”
So what better way to leverage these personal testimonies than on the heels of the so-called “Bible” of psychiatry’s floundering credibility, and uncertain future? On May 19th, in connection to the Occupy Psychiatry protest at the American Psychiatric Association’s annual conference in San Francisco, the Open Paradigm Project launched a social media campaign driven by “stories of hope from people who rejected psychiatric diagnosis”. It is now live on YouTube, Facebook, and Twitter. The videos will be featured on MadinAmerica.com and offered as free content to individuals, groups, and organizations willing to push these stories through their personal, professional, and social networks. We currently have more than 50 of these testimonials produced, and a dizzyingly limitless opportunity to keep producing them. Alas, the butterfly effect of psychiatry.
Ten years ago, Oryx and Will and other members of Freedom Center gathered underground, fearful of being seen or heard, besieged by a paradigm they had came to know was flawed, and dangerous. Today, that paradigm has been rocked to its very core, and is shifting on its foundations. These testimonials speak loudly about the message of hope and recovery. Hope of a life fully lived, and recovery of the right to face and overcome (or not) life’s challenges with the strengths and gifts we were all born with, rather than the specious promise of a chemically enhanced life-at-ease. These stories teach us about the resilience of the spirit, and the depths of human experience. About our capacity to learn, and to grow.
I did not identify as a survivor of psychiatry. But I do now. We all are, or are coming to be, survivors of an era where one medical subspecialty rose to claim authority over human experience and its travails. As someone who wants to tell stories, good stories, I feel it’s important to remain as objective as possible. But sometimes you reach a critical mass, and the writing is on the wall. As media producers, we have the privilege and responsibility of paying forward the power of these stories. If they can reach a family, or a young person going through crisis, and inform their choices, letting them know that they are not alone – then we can be a part of reclaiming a healthier future for us all. One in which there is always hope, and no such thing as broken.
For information about the on-going campaign, or to contact the producers of the Open Paradigm Project, please visit http://openparadigmproject.com
