(1) abolishing the corruption by giant drug companies of mental health institutions, research, and practice; and

(2) exhuming buried truths about the relationship between a dehumanized society and emotional suffering.

Abolishing the Corruption by Big Pharma of Mental Health Institutions, Research, and Practice

In what has become a “psychiatric-pharmaceutical industrial complex,” giant drug companies have corrupted mental health institutions, research, and practice. Most major mental health organizations and institution from which the general public and doctors receive information are financially interconnected with Big Pharma. This practice needs to be abolished by law.

The official psychiatric diagnostic bible that is published by the American Psychiatric Association (APA) is called the Diagnostic and Statistical Manual of Mental Disorders (DSM). DSM-5 was recently approved by the APA, and according to the journal PLOS Medicine, “69% of the DSM-5 task force members report having ties to the pharmaceutical industry.” The corruption of the APA by Big Pharma is nothing new. On July 12, 2008, the New York Times reported the following about APA “In 2006, the latest year for which numbers are available, the drug industry accounted for about 30 percent of the association’s $62.5 million in financing.” Congressional investigators in 2008 also discovered that then president-elect of the American Psychiatric Association (Alan Schatzberg of Stanford University) had $4.8 million stock holdings in a drug development company.

The APA’s recently approved DSM-5 is an embarrassment even for some psychiatrists who had taken seriously previous DSM editions. Psychiatrist Allen Frances, former chair of the DSM-4 taskforce and currently professor emeritus at Duke, wrote in “Last Plea To DSM-5: Save Grief From the Drug Companies, “Making grief a mental disorder will be a bonanza for drug companies, but a disaster for grievers… Psychiatry should not be mislabeling the normal.”

Most mental health professional organizations that are not on the take from Big Pharma are opposing DSM-5. The Coalition for DSM-5 Reform is comprised of over 50 organizations including the Society for Humanistic Psychology (one of several divisions of the American Psychological Association that are in the coalition), the British Psychological Society, the Danish Psychological Association, the Association of Black Psychologists, the Association for Women in Psychology, Psychologists for Social Responsibility, and the International Society for Ethical Psychology and Psychiatry.

Within the psychiatric-pharmaceutical industrial complex, there is a government-industry revolving door of employment, a staple of industrial complexes. As I detailed in 2008 in “Psycho-Pharmaceutical Industrial Complex,” there has been a revolving-door of employment between giant pharmaceutical corporations and the U.S. Food and Drug Administration (FDA), as well as with the National Institute of Mental Health (NIMH). This makes it easier for Big Pharma to create and corrupt psychiatry “thought leaders.”

Perhaps psychiatry’s most influential thought leader is Harvard psychiatrist Joseph Biederman, who “single-handedly put pediatric bipolar disorder on the map,” according to pediatrician and author Lawrence Diller. Biederman’s financial relationships with drug companies was discovered by the public in 2008, when the New York Times reported the following about him: “A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials.” As part of legal proceedings, Biederman was forced to provide documents about his interactions with Johnson & Johnson, the giant pharmaceutical company; the New York Times reported Biederman pitched Johnson & Johnson that his proposed research studies on its antipsychotic drug Risperdal would turn out favorably for Johnson & Johnson — and then Biederman delivered the goods.

Due in great part to Biederman’s influence, the number of American children and adolescents treated for bipolar disorder increased 40-fold from 1994 to 2003. Bloomberg News reported in 2007, “The expanded use of bipolar as a pediatric diagnosis has made children the fastest-growing part of the $11.5 billion U.S. market for antipsychotic drugs,” and today this market has grown to $18 billion.

Biedeman is not alone among psychiatrists lining their pockets with drug company money. The New York Times (“Top Psychiatrist Didn’t Report Drug Makers’ Pay”) reported this about Charles Nemeroff: “One of the nation’s most influential psychiatrists earned more than $2.8 million in consulting arrangements with drug makers from 2000 to 2007, failed to report at least $1.2 million of that income to his university and violated federal research rules, according to documents provided to Congressional investigators.”

A 2008 Congressional investigation revealed a widespread financial interconnection between Big Pharma and psychiatric institutions and thought leaders. Unfortunately, the U.S. Congress has a history of occasionally exposing the corruption of a major industrial complex but then doing nothing about it; and this has been the case with Congress and the psychiatric-pharmaceutical industrial complex.

What needs to be done? Let’s start by throwing out everything that has been created by Big Pharma corrupted mental health institutions and thought leaders. And let’s begin a “Mental Health Enlightenment” based on genuine science, which would mean an admission of exactly what psychiatrists and psychologists do and do not know.

Exhuming Buried Truths about the Relationship between a Dehumanized Society and Emotional Suffering

Big Pharma corruption of mental health institutions has also meant an ever-increasing focus on our biochemistry. We are diverted from the reality that many emotional problems are not caused by biochemical or genetic defects but are often natural human reactions to powerlessness, hopelessness, and loss of community and autonomy that have been created by public policies. Mental health is hugely political, and it is very much connected to the sanity and humanity of a society and culture.

In the United States today, Native Americans have the highest suicide rate among all ethnic groups, and suicide is the second leading cause of death among Native American adolescents. As I document in Surviving America’s Depression Epidemic, prior to colonialism and their subjugation, suicide was virtually nonexistent among young Native Americans. Social and cultural upheaval has resulted not only in depression and suicide for Native Americans but also in alcohol abuse and other destructive behaviors. Psychologist Roland Chrisjohn in The Circle Game (1997) notes: “In truth, does not the history of Jewish suicide during the holocaust, like the histories of suicide in the Arawaks, the Home Children, and the Marshallese Islanders, and countless other oppressed groups, teach us that suicide is in part a normal human reaction to conditions of prolonged, ruthless domination.”

As I described on May 6, 2013 in “What’s Behind ‘Substantial Increases’ in Suicide Rate for Middle-Aged Americans? Bad Economy Is Likely Culprit,” the Centers for Disease Control (CDC) reported on May 3, 2013 that the suicide rate among Americans aged 35–64 years increased 28.4 percent between 1999-2010, and the Lancet estimates that the three-year recessionary period from 2008 thru 2010 was a source in the United States for “4,750 excess suicide deaths.”

An exclusive focus on giant coroporations’ profits comes at the expense of important components necessary for mental health. One such component is community — face-to-face contact with emotional and economic interdependence. Another component is autonomy — the experience of some control over one’s life.

Postpartum depression occurs in 10 to 20 percent of women in the the United States but is considered rare in Fiji and some African populations, according to a 2004 BMJ article “Learning from Low Income Countries: Mental Health.” Based on a review of the literature, the authors concluded, “Structured social supports after childbirth are described in groups of women with low rates of postpartum depression.” Because of politics and public policies, many American woman lack social support before and after childbirth.

Genuine community in America is increasingly obliterated as social isolation increases. A major study reported in the American Sociological Review in 2006, “Social Isolation in America: Changes in Core Discussion Networks Over Two Decades,” examined Americans’ core network of confidants (those people in our lives we consider close enough to trust with personal information and whom we rely on as a sounding board). Authors reported that in 1985, 10 percent of Americans said that they had no confidants in their lives; but by 2004, 25 percent of Americans stated they had no confidants in their lives. This study confirmed the continuation of trends that came to public attention in sociologist Robert Putnam’s 2000 book Bowling Alone, which reported a decline in U.S. social capital (his term for social connectedness) in virtually every area people have historically found community.

Social isolation is related to depression and many other emotional problems. Increasing social isolation in America is not caused by genetics and biochemistry but by public policies that focus only on increasing the profits of giant corporations.

Large empires can enslave people, and large corporations can create standardized, assembly-line, robotic living. Until recently, it was common sense that all bigness was a threat to autonomy and freedom. Before the terms mental illness and depression entered our lexicon, it was basic common sense that if a few big guys had all the power, then the rest of us would have none, and if we had no autonomy or control over our lives, then we would more likely have emotional difficulties.

Because of corporate domination, Americans have increasingly lost community and autonomy, and have acquired instead the tyranny of institutionalization: domination by gigantic, impersonal, bureaucratic, standardized entities — visible in large corporations, the workplace, health care, schools, and much of our lives. This institutionalization has made many Americans feel small, isolated, helpless, scared, inattentive, bored, angry, alienated, and depressed.

In a Mental Health Enlightenment based on genuine science, mental health researchers and practitioners would be uncorrupted by Big Pharma. They would acknowledge what, scientifically, they do and do not know, and they would make clear to Americans how public policies affect our mental health.

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

The post The Green Shadow Cabinet and a Mental Health Declaration of Independence appeared first on Mad In America.

For several decades, since the days when I was a patient, I have seen and heard how an obsession with questions damages psychiatry. Many of us have been asked the same questions day after day, year after year: ‘Do your thoughts seem faster than normal?’, ‘Do you ever have thoughts in your mind which are not your own?’, ‘Do you feel anxious?’, and so on.

What does this feel like? As ever, my patients describe it best. One locates it as “like a machine gun into my brain”, another “an attack, an intrusion, a knife into my body”. A socially anxious man appeals “Did I say what I was supposed too? Did I perform OK?”. A woman with a long history of childhood abuse says the questions felt like “a penis going into my body, again and again”.

These type of descriptions are the norm not the exception. For the structure of being asked questions is a specific one: it places the desire of a powerful other (the nurse, the psychiatrist, the social worker) as primary. This echoes an interactional pattern so familiar to so many who have been bullied, shouted at, beaten, tortured, sexually abused. The feelings from these past times can return in the body – anxiety, paralysis, disconnection, anger – none of which are articulated to the professional, trumped by the desperate life or death task of getting out of the room in a vaguely ‘together’ way. So the doctor gets thanked for his time and doesn’t learn any better, and it is the student nurse on the ward, or the parent at home who sees the person in bits. Hearing only what a patient says under questioning when frozen by paralysis, or subject to the hyper-arousal of anxiety, the professional misses the opportunity to hear the threads of something new, the possibility of weaving with the patient a narrative of hope and recovery.

To be with someone in real distress can be incredibly difficult, and we can perhaps empathise with the professionals unconscious desire to cling desperately to the diagnostic manual, to the crib sheet of mental state assessment questions, as someone drowning clings to a rock. Hearing a person’s real history, rather than the history of their symptoms, makes explicit the limits to what psychiatry can do – the drugs don’t often work, and they rarely get rid of what triggered the problem in the first place. As both parties have some awareness of this, they can only perform  ‘the doctor who asks questions’ and ‘the patient who answers questions’. This is deeply depersonalising and means neither party will quite be there, both alienated by a set of rules of how they should be, as Tom and Jerry are obliged to perform Cat and Mouse. Yet, it’s perfectly possible to rip up the implicit rule book, and have a real encounter. It doesn’t mean the psychiatrist can’t check in on any risk questions right at the end, it doesn’t mean no medication to dampen down the physical, but it does mean the patient gets to dictate what the space might look like for the overwhelming majority of the time.

The need to fight for space so something of one’s distress can be heard becomes ever more important as even psychotherapy spaces becoming colonised by form filling, much of which is a response to the professionals internal judge who screams ‘show you are doing something!’ as opposed to a task related to patient care. For a barrage of questions about symptoms obliterates the possibility of the joining patient and professional to explore: ‘symptom of what’.  This is especially tragic when going mad can unconsciously be a way to try to communicate something that hasn’t been put into words. Mania can be a desperate attempt to flee hopelessness, voices the still heard words of an abuser, rage an understandable response to being downtrodden, depression unspoken grief for a baby, lost. The ‘what’ here is not connected to anything that can be found in one of the heavy diagnostic manuals, or got rid of by a small change in medication dosage. Every meeting that fails to explore this ‘what’ solidifies the psyches defences – it repeats what is often a common theme in a patients life ‘you are alone with this’.

How, then, can we construct a space that isn’t dominated by colonising questions? Both parties may think anxiously of the comic blind date sketches that originate from the horror of being asked outright ‘What do you want to talk about?’ Instead, professionals need to learn how to carve out an open, space in a gentle manner. This must involve thinking about how power, emotion, and social conventions may be present in interaction. Consider the question ‘How are you?’. A health professional will often ask this before proceeding to do a mental state exam, taking a simple response as meaning its time to start on their agenda. However, in any scenario, ‘How are you?’ nearly always needs to be asked twice. For at first, we tend to give a smudged response (‘ah you know, so so’) to allow us to ask the questioner how he or she is, the rules of normal discourse. We do this so often it’s automatic, so if a professional asks it we default into the same pattern.

Yet, if we ask someone ‘how are you?’ a second time, and really mean it, something more singular always emerges. The text of the person’s response nearly always provides some clues we can pick up on. So, if someone says “I’m alright, you know, things aren’t always easy”, we can repeat “things aren’t always easy” with a questioning tone and we’ll get an elaboration on how present the voices are, how impossible it is to open the post, or whatever it may be. Or we might pick up the ‘you know’, insisting perhaps with a dollop of humour, that its actually the patient who knows. And then we hear how tough its really been. We ask one simple question and then position ourselves as subservient to the discourse of the patient, attending to the silences, and pauses, and body language. It is this which gets to direct the conversation. Questions only become useful when they are about something idiosyncratic that has slipped into the conversation – an interest in a particular band, an old dream to be a footballer. Curiosity on this can often allow new expanses of our experience to reach discourse, can remind us of things its worth getting better for.

Rather than the dominance of the voice of the most powerful person in the room, we need a psychiatric practice that privileges and gives real space to the service users voice. It is madness to expect healing to occur if a space is colonised by standard often heard psychiatric questions, with the service user only asked what they wish to talk about in the snatched last few minutes, expecting them to express their needs whilst a professional shuffles their notes and makes to leave the room. Though psychiatry brings up metaphors of the brain to justify its practices the whole time, the evidence base actually supports such an approach. The diagnostic system is being revealed left, right and centre as an unscientific system still waiting 100 years on for evidence, the promised improved wave of new atypical antipsychotics now revealed as no more effective than the ones that went before, and the talking therapy beloved of the market place, CBT, is shown to be no more effective than befriending for psychosis . In contrast, the best outcomes in the world, using the most rigorous randomised controlled trials, are from a Scandinavian programme called ‘Open Dialogue’. With this approach, when someone becomes acutely distressed, everyone involved meets within twenty four hours – the patient, their family, any neighbours or friends, and professionals. They talk about what may be happening. The professionals do not ask questions, they are more there to witness what emerges, and make sure everyone’s voice is heard. The professionals talk about the power their titles may seem to bring, and how it is is dwarfed in the face of the lived experience of those present who know what’s been happening. All the professionals do is listen for the truths, the islets of hope, the forgotten traumas and dreams, which inevitably leak out in the act of speaking.

I write “all the professionals do is listen for the truths” but the ability to do this, to stay with distress, is something that has to be cultivated through gently guiding the professionals hand away from the book, so they can actually be with the person in front of them. If the professional can stop using questioning as a way not to be there, they will be able to join with the patient to hear something new and emerging in the conversation that may be a surprise for all. It is when we have the space and safety to surprise ourselves with hidden knowledge of where we are, and where we have been, that the seeds of recovery are sown.

The post Enough with the Questions! appeared first on Mad In America.

I am part of a group of folks working on a new community or “peer’” bridging project in Western Massachusetts.  The bridging intended in this work is in support of people who are hospitalized and would like support transition back into the community.  The initial stages of this project, however, have had us in quite different “bridge building” situations — with hospital management — to discuss our upcoming roles.  These meetings have often been stressful and emotional experiences for reasons I will explore below.

Recently our group was asked to present a “recovery” training to employees at a local psychiatric hospital.  We were invited to talk about general ideas and our personal experiences.

After sharing our thoughts, and intimate details from our own lives we learned that our words were sought out less in earnest but more as a test of our credibility.  The small group of upper-management clinicians admitted they had asked us there on the terms of a recovery training as a way to “screen” us.  Our reputation for being potentially venomous and “anti-psychiatric” had, apparently, preceded us and it was our task to — unwittingly — prove we were credible enough to address the larger staff.  The ill feeling from this meeting stayed with me for days after.

In short, I felt exploited.  We were working from a deficit.  The five clinicians present actually seemed a bit moved by our words, although their admission that we had essentially been asked there on false pretenses only diminished one clinician’s claim that, “we actually have a lot more in common than not.”

I feel compelled to write about this experience for both Mad in America regulars and the hospital staff whom we met with this past month because I genuinely believe their underlying intent was not bad. In fact, judging by the words they chose in the meeting I could easily imagine the reasons many of these people ended up in these roles was through genuine concern for “helping” other human beings.  Meetings such as these carry stresses for us as peer advocates regardless of the intent of those with whom we meet.

If you’ve ever had to talk about difficult experiences in your life and speak about them in ways that defy the stereotypes and connotations these experiences evoke for most people — you might understand.  I imagine testifying in a courtroom and trying to state things that bring up strong and deep emotions with a delivery that tries to remain as unemotional and rational as possible is similar.

Speaking to directors of behavioral health or clinical or nursing supervisors in psychiatric hospitals has felt like that for me.  We were compelled to speak about some of the most devastating, distressing and emotional times in our lives in as credible, articulate and well-stated language as possible.  It’s like time-traveling — with all the exhausting implications for a person moving between different environments and bodily states at breakneck speed.  Oh; and there are things at stake in just how well you hold yourself in these moments too.

This brings us back to the hospital conference room and the so-called “recovery training” we were asked to provide.

Much of our presentation included such feats of time-traveling — and more specifically the ability for us to put words to some of the most devastating experiences in our lives.  It required us to explicitly and implicitly say, “And, yet; here I am speaking and living life fully, defying those expectations many people hold for those other people diagnosed with a ‘serious mental illness,’ or who suffered years of feeling suicidal, or who experienced dozens of hospitalizations.”

In many ways we as peer advocates were moving out on a limb to show such vulnerability to people whose roles remind us of the very visceral experiences of these times and the utter hopelessness we felt living in them.  A large part of our work as advocates, including sharing our ideas with those who work in the mental health system, involves this risk of vulnerability and, for me, also the challenge to relate to those people labeled “clinicians” (or psychiatrists, therapists, psych nurses, etc.) as human beings, rather than just what they might symbolize to us from the past.

When one of my colleagues asked in the middle of the training why we weren’t meeting with more of the staff, as had been our expectation, rather than just the five folks in supervisory roles, the response one clinician provided revealed that this was intentional.  In summary, she said that our reputation of being “anti-medication” preceded us and that these five folks wanted to meet with us first under the guise of a training to see if we were, in fact, as hostile and unable to listen to their viewpoints as they imagined we might be.  She admitted this and in the same breath suggested that we, in some way, defied these stereotypes in how we spoke about our lives and ideas on “recovery”.  Unfortunately, these words could not erase their original deception.

We are already used to being discredited for our psychiatric diagnoses, adding insult to how much those labels have failed to faithfully represent us in both the past and present.  Now, we are faced with overcoming a lack of credibility because honest talk of the abuses we’ve suffered, the anger we’ve felt and the changes we hope for (mixed with rumor and assumptions) sometimes seems to lead people with roles in the mental health system to believe we are obstinately “anti-them.”  It feels as if these folks are sharing some sort of case file and ‘diagnosis’ that has been applied to our whole organization, and I hope this doesn’t make me sound “symptomatically” paranoid.

Although different in some ways, reflecting on this meeting reminds me of an experience my friend encountered when visiting an acquaintance confined to a psychiatric ward.  She and her friend were trying to talk privately in a cafeteria (the designated and not very private visiting area on that particular floor) about some very traumatic and emotional experiences when a nurse came out of the nursing station, which looked more like an observation deck looming over the cafeteria than a separate room.  She addressed both of them by saying that the person locked on the ward was acting very paranoid and inquiring if she didn’t she think she could use some more medication to address that behavior.  Her response was, basically, “You keep staring out of the nurses station after whispering things to the other nurse while my friend and I are trying to talk through some distressing stuff — wouldn’t that make you paranoid, too?

The point here is not the nurse’s apparent rudeness but rather that people in roles of power in the mental health system often don’t realize how much complicity they have in actually creating the symptoms they claim are biologically-based in individuals with psychiatric labels.

I’d like to challenge the clinicians in the “recovery training” scenario I’ve outlined to think about their roles in the system and how much our interaction may have benefited without such prescriptive mistrust and increased honesty as a baseline for dialogue.  If we are going to have any chance at seeing each other’s perspectives first, we — as peer advocates — must be treated with the respect and dignity that would be afforded to anyone else without these labels (both psychiatric and anti-psychiatric).  Then we might agree to approach each other with genuine curiosity and humanness, values through which the opportunity for growth and understanding can exist.

To those with whom we met: I hope you will be open to hearing this and moving forward in a way that creates more space for us and the many people like us to share the wisdom gained as time travelers who can reach back into our histories and pull on experiences to which you do not have first-hand access.  And, with such respect acknowledged, my ears are open to learning from you, too…

The post When “Recovery” Feels Like a Trap appeared first on Mad In America.

Because I was ill, “I needed to take medication.” The fact that I didn’t want to take medication was “because I was ill.” If I wanted to get better, I “must accept my diagnosis and take medication” and then they would give me welfare benefits and a free bus pass. I wouldn’t ever recover. I would always have this illness. I wouldn’t be able to work. I didn’t know what was best for me. I lacked insight. As mental health professionals, they all knew what was best for me, because they were the experts.

As far as I am concerned, I am not mentally ill. What my abusers did to me was sick. I have had a perfectly natural, human response to devastating experiences. Living with the knowledge of what was done to me, and the way in which psychiatry has added insult to injury by blaming me, is enough to drive anyone mad. My first psychiatric admission in 1993 was my last. I knew then, and I still know now, that to be in such a desperate state in such an unsafe environment was potentially lethal. Ironically, the place that was meant to provide sanctuary for me became the place that nearly drove me over the edge once and for all.

Sadly, my experience, like many people in the psychiatric survivor movement, is still all too common. Every week across the world, intelligent people are expected to accept discredited diagnoses for fear of being labeled as `lacking in insight’ and having treatment forced on them. Every week thousands of people are coerced into taking medication that they don’t want and which frequently does more harm than good. Every week, people are incarcerated against their will, “for their own good”. Fighting for the rights of people deemed mad, many who have already suffered more than enough, is the last great civil rights movement.

The recent furore surrounding publication of the new DSM has provided a much-needed opportunity to discuss and debate crucial issues about how we make sense of, and respond to, experiences of madness and distress.  Many psychiatrists, psychologists and other mental health professionals have expressed their dismay about the dominance and inadequacy of a biomedical model of mental illness.

Whilst we share these concerns, welcome these debates and support colleagues that are willing to take a stand, The Hearing Voices Network believes that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. People who use services, are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives. That is why we have launched this debate on DSM5 and psychiatric diagnoses.

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PRESS RELEASE: Monday 20 May, 2013

HEARING VOICES NETWORK LAUNCHES DEBATE ON DSM 5 AND PSYCHIATRIC DIAGNOSES

IT’S THE BAD THINGS THAT HAPPEN TO YOU THAT CAN DRIVE YOU CRAZY!

The Hearing Voices Network in England has issued a position statement on DSM 5 and the wide issue of psychiatric diagnoses following last week’s debate on the need for a new paradigm in mental health services, reported largely as a ‘turf war’ between psychiatry and psychology. Concerned that this debate can all too easily sound ‘academic’ and miss the voices of the very people these systems impact upon – those diagnosed with mental health problems – HVN are taking the debate back to the people.

“We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system.”

Jacqui Dillon, Hearing Voices Network, Chair.

In their statement, the Hearing Voices Network (HVN) state that psychiatric diagnoses are both scientifically unsound and can have damaging consequences. HVN suggest that asking ‘what’s happened to you?’ is more useful than ‘what’s wrong with you?’.

Concerned that essential funds are being wasted on expensive and futile genetic research, they call for the redirection of funds to address the societal problems known to lead to mental health problems and provide the holistic support necessary for recovery.

This is part of a growing, international movement by survivors of the psychiatric system who are questioning the adequacy of a biomedical model to make sense of and respond to madness and distress (see: InterVoice Online, MindFreedom, PsycDiagnosis, Mad in America, Occupy Psychiatry, The Open Paradigm Project

HVN invites people with lived experience of diagnosis and their supporters to engage in a discussion about the issues and help plan a way forwards.

“People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”

Jacqui Dillon, Hearing Voices Network, Chair

Notes for editors:

• The Hearing Voices Network (England) is a national, user-led charity that supports people who hear voices, see visions or have other unusual experiences. The Hearing Voices Network is part of the rapidly expanding global Hearing Voices Movement with 26 Hearing Voices Networks operating, across 5 continents. The Hearing Voices Network’s position statement can be read, and commented on, via their website www.hearing-voices.org

• Hearing Voices Network Chair, Jacqui Dillon (07951 635 033) and Trustees Rachel Waddingham (07969 161 586) and Peter Bullimore (07950 837 694) are available for interviews.

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Position Statement on DSM 5 & Psychiatric Diagnosis

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It caught my eye because it started with a nod to Frieda Fromm-Reichmann, the psychoanalyst who was immortalized in Joanne Greenberg’s fictionalize memoir of her recovery from psychosis, I Never Promised You a Rose Garden.  Ms. Shulevitz goes on to describe the field of loneliness studies from a psychological to a neuroscience perspective.

I have been struggling with the notion of the medical model as it applies to human suffering as well as the ability of basic science research to inform the work we do.  There has been a lively discussion on this website about this (here, here, and here).

For me there are at least four separate questions to be addressed. The first is whether neuroscience is capable of understanding human emotion and higher level cognitive experiences.  The second is the extent to which that understanding – even if it is achievable – is critical to our being able to help people in distress.  The third is whether  it is correct to assume, as many people seem to do, that if we come to some basic understanding of brain function as it pertains to core human emotion and suffering that this will automatically translate into treatments that are commonly thought of as “biological,” such as drug treatment. The fourth relates to the limitations and relevance of studying the brain in isolation when we are constantly in interaction with our environment.

The Shulevitz article provides a good platform from which one can address these questions.  She begins with a discussion of Fromm-Reichmann’s assertion that loneliness – and by this she meant the subjective experience of want of intimacy – was “at the heart of nearly all mental illness”.  She then reviews all of the effects loneliness has not only on the psyche but the body. This is followed by a review of modern research into this field which traces the effects of loneliness in humans from a social perspective to the effects of social isolation and rejection on brain functioning.

I found the article and the studies described to be of interest but inherent in the narrative is the notion that we needed the evidence of brain changes to legitimize Fromm-Riechmanns’s initial observations. The recommended “solutions” are primarily social; the author describes studies that showed the benefits of providing enrichment to young children and their families and she reports on an ongoing study in which researchers are teaching soldiers about social cognition with the hope of reducing post-traumatic stress.  The implication, however, is that the basic science data were necessary to legitimize this area of inquiry.

For those of you who reject the notion that neuroscience research might inform our understanding of human distress, I suggest this thought experiment. I was talking recently to a colleague who studies headache. He explained how researchers in this field worked for years without being able to find biomarkers. They then decided to model a diagnostic system after the DSM. This allowed them to do research that provided preliminary data which they hope will improve their funding.  They propose that understanding the neural substrates of head-ache will yield clues on how to provide more benefit to those who suffer from what for many is a debilitating affliction.   At the same time, he understands how the experience of headache is not based entirely within the person; that the experience can be modified by external experiences.  He is not entirely wedded to finding drugs that will reduce headache; he understands that altered environments might also help. But he nevertheless, believes that this basic research will be informative.

If this seems legitimate, I would ask how in any way this differs from a similar approach to something like anxiety?  Anxiety is an experience that can range from mild and transient to persistent and debilitating. It is experienced in the subjective realm and it has correlates throughout the body.  It can sometimes be reduced dramatically with drugs but it can also be exquisitely impacted by environmental changes.  If basic neuroscience research is legitimate to further our understanding of headache, why is it less important to further our understanding of anxiety?

I find it interesting to learn of the neural correlates of core human experience. In the true spirit of science, we do not know where the research will lead.  I think it is incorrect to assume that neuroscience research will only result in treatments approaches that are “biological”; i.e., contained in a capsule. However, I am not convinced this work is required to legitimize investigation into the value of social connections on our well-being and I do not think we need to wait until we have mapped out the brain before we invest time and money into learning more about this.

That to me is the crux of the issue. I do not dismiss, a priori, that we might someday completely untwist the fundamental workings of the brain.  However, I do not think this is where all of our research dollars should go.  For me, there is ample evidence that social connections matter.  We can invest money into understanding why some of us struggle more and how those of who struggle might learn to make more connections. We can try to understand how our social system maximizes health and well being.  We can invest in understanding treatment approaches that appear to have had good outcomes even if they are not premised on the fundamental biological paradigms of the day.

At the same time, I think it benefits all of us to listen openly to as many perspectives as possible as we join together in re-imagining how best to engage with people who are struggling with extreme states.  I do not want to be privileged in my authority to speak  merely because I am a physician; my experience has taught me the profound limitations of my knowledge.  But we will not know until we know what neuroscience can and can not teach us.  I am hesitant to walk away. I think I write this in the spirit of Robert Whitaker’s work; honest and open inquiry is what should be privileged not an authority or the particular framework from where that inquiry emanates.

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On the 19th, Jim Gottstein of PsychRights and Matthew Morrissey of Mind Freedom International will lead a several-hours long Occupy APA rally directly across from the Moscone Center where the APA will be meeting. The several speakers who will address rally participants – Leonard Roy Frank; Ted Chabasinski; Chaya Grossberg; Michael Cornwall – will be crossing mics with former President Clinton who, sometime later that afternoon, will deliver the conference’s keynote. Rollin’ out the big dawg for the big bucks. Clinton is sure to attract lots of mainstream media coverage, which will give the APA the chance to put a favorable spin on some of the recent setbacks it’s suffered.

The biggest blow came from an unanticipated source, from the National Institute of Mental Health and its director, Dr. Thomas Insel. On April 29, less than a month before the new DSM’s release, Insel announced that “… it is critical to realize that we cannot succeed if we use DSM categories as the ‘gold standard’ … That is why NIMH will be re-orienting its research away from DSM categories …” Ironically, as Kirk and Kutchins remind us in their scathing critique of the DSM III, the disease classification that Robert Spitzer and colleagues pioneered in DSM III was designed to facilitate research into the biological causes of mental disorders. Its authors soft-soaped the lack of construct validity of their diagnoses and spot-lighted what they contended was a high degree of inter-rater reliability. According to Spitzer, if psychiatrists could agree among themselves about diagnoses and the criteria on which they rested, they would now be free to investigate the underlying, bio-medical etiology. And so the advent of “scientific psychiatry.”

Thirty years later we’re still waiting. Psychiatry has continued to search and continued to promise, in edition after edition of the DSM, that the next edition would be the charm. The decision in 1999 to develop the DSM-5, despite no apparent need for a new manual, was rooted in the APA’s illusion that the discovery of the root causes of mental illness was at hand. Given the work already done – some presumed genetic links – ten years were deemed sufficient to complete what had been started, and publication was projected for 2009. Then pushed back to 2012; and here we are, 2013, and still no root causes. Under the intense scrutiny and barrage of criticism from professionals and the general public, the APA was obliged to admit last December that the sought-for holy grail of “biomarkers” had yet to be found. Hence, Insel’s announcement that NIMH was jettisoning the DSM and any research done with it. From this point on, NIMH will only fund investigations that utilize its own “research framework,” the “Research Domain Criteria (RDoC)”; which, wonder of wonders, is at least ten years away from being operational. To quote Insel, “… we cannot design a system based on biomarkers or cognitive performance because we lack the data … RDoC is a [research] framework for collecting the data needed for a new nosology … Not a clinical tool … a decade-long project that is just beginning…”

If you can follow all this, it means that the NIMH has to collect the data to develop the research tools to do the research; and it will pay good money – some of the $100 million Obama talked about for “brain research” – to get those tools to do that research. Ah, Rube Goldberg would have loved this, circles within circles. And just so you don’t get your hopes up too high, Insel reminds us that “… mental disorders are biological disorders …” More of the same for the next ten, twenty, thirty years.

As if that weren’t enough for the APA to digest, the Division of Clinical Psychology of the British Psychological Society, one of the APA’s principal gadflies, issued a position paper on May 13 that constitutes a direct challenge to the APA and the NIMH. Entitled “Time for a Paradigm Shift,” it calls for “a conceptual system not based on a ‘disease’ model.” Largely ignored in the U.S., save for Lucy Johnstone’s May 12 post on MIA, the Division’s position paper received wide play in the British press – The Observer printed two provocative articles on May 11 and 12, respectively, “Psychiatrists Under Fire in Mental Health Battle,” and “Medicine’s New Battleground: Does Mental Illness Really Exist?” Fortunately for the APA, American professional organizations, made no public comment: “captive,” as Allen Frances would allege; or adrift, as per my telling, on that long and peculiarly American stream, Denial. In any event, the counter-spin has begun. On May 14, Insel and Jeffrey Lieberman, the APA’s president-elect, issued a joint statement, “DSM-5 and RDoC: Shared Interests.” They pledged that the two organizations will “…continue … to work together…; ” conceded that “ … what may be … feasible today for practitioners is no longer sufficient for researchers …;” and agreed that “ … Patients, families and insurers can be confident that effective treatments are available and that the DSM is the key resource …”

To which I can only echo Groucho — “Horsefeathers.”

Fortunately for those of us who can’t be with them, Jim and Matthew and the APA Occupiers will be on the scene to expose the lies and hypocrisy. I’m sure that ‘phone calls, tweets and e-mails of support to those you know will be there will provide them with a sense of our support and solidarity with them. I had been invited to speak at the rally, but, unable to attend, have substituted a statement on behalf of the Committee to Boycott the DSM-5 which will be read to those assembled by Matthew Morrisey. I’ve attached below a copy of the statement, “The APA & The NRA: Two Peas in a Pod.” It not only expresses my solidarity with the APA Occupiers but my frank contempt for two of the foremost supremacist organizations in the United States. Read it and join the Occupiers. And, don’t forget – “Don’t mourn, organize!”

(Please note that the references for Section I above are to be found at the end of Section II below.)

* * * * *

II — The APA & The NRA: Two Peas in a Pod

Jack Carney, DSW, Coordinator
Committee to Boycott the DSM-5
OCCUPY APA Action
Annual APA Convention, May 19, 2013

Greetings, comrades and occupiers. I regret we can’t be there with you, but, poor substitute, I’ve sent along this statement of support and solidarity that one of the Occupy organizers will share with you.

I’ll begin by saying that the APA deserves all the enmity you can direct its way. You’re in San Francisco to protest the American Psychiatric Association at the time and place of its annual convention – its 166th, by the APA’s count –and to occupy as best you can the time and space it has claimed as its own. Not surprisingly, the APA’s wordsmiths have devised a throat-gagging theme for the convention — Pursuing Wellness Across the Lifespan – and the conference organizers have outdone themselves by inviting as the keynote former President Bill Clinton, otherwise known as the first-husband-in-waiting.

You’ve come at an opportune time, the occasion of the publication by the APA of its new DSM, the DSM-5, the fifth in a series of diagnostic manuals issued by the APA since 1979 that the APA has claimed are rooted in scientific research. In the intervening years, the DSM has become an iconic tome, used by psychiatrists and mental health profesionals throughout the world; relied upon by Big Insurance to adjudicate claims and by Big Pharma to validate the effectiveness of its medications. It is the face of the APA, its universal identifier, its singular accomplishment. It has also attracted unwelcome attention to itself and to the APA — success has its costs.

With each successive DSM since 1979 – DSM-III & III R; DSM-IV & IV TR; and now, DSM-5 – criticism as well as skepticism has increased. With each diagnosis that’s been added, the credibility of the DSM and of the APA has diminished. More and more of us now know that none of the 300 diagnoses that have accumulated over the years and that will populate the DSM-5 has any scientific basis, that the vaunted biomedical model is a sham, a fiction. We’ve also come to see the APA as a shill for Big Pharma and the DSM’s diagnoses as a cover for the prescription of psychoactive medications that are addictive and dangerous and that have succeeded in killing and shortening the lives of thousands of the persons prescribed them.

How very much like the NRA, another organization that has sold itself to corporate interests, in this case to the large gun manufacturers. The NRA sees more guns as the antidote to gun violence. What’s its slogan – a bad guy with a gun can only be stopped by a good guy with a gun? The APA for its part hasn’t seen a psychoactive med it doesn’t like. Wayne La Pierre’s strategy to protect kids in school is to station cops with guns in every school in the country and to arm teachers. The APA has a companion strategy — ferret out potential student killers by increasing school mental health services, identify more ADD kids and prescribe them the necessary sedating medications.

Welcome to 1984 and Big Brother, with half the population somatized. Welcome to the U.S. as an armed police state.

The NRA won’t oppose prohibition of the sales of assault rifles because they’re the biggest money makers for Big Gun. It’s taken to hide its money-grubbing agenda behind two preposterous beliefs that serve it as perfect smokescreens: first, that the 2nd amendment gives citizens a right to own guns and that the Federal government wants to take that right away — nothing like a little paranoia to muddle people’s minds; and second, that only crazy people commit mass murders – if the public wants gun control legislation, do a bait and switch … pass a law increasing mental health funding to keep the crazy folks under control. To no one’s surprise – not mine, not yours, not even that of The New York Times — the mental health lobby has taken the bait and it looks like the APA and the NRA will wind up sharing the same bed.

So where does that leave us and those Americans that seem to have figured this out? It leaves us up against two nine hundred pound gorillas, with not a fraction of their resources. What can we possibly do?

Well as the old Wobbly and my guiding light, Joe Hill, would have said … “Don’t mourn [or feel sorry for yourself], ORGANIZE!” If you want to change or put an end to a system of oppression, disrupt the relationships of those entities that comprise it. The four principals of the national mental health system are Big Government, Big Pharma, Big Insurance and the APA. You’ll notice that I didn’t say BIG APA. That’s because the APA is the most vulnerable of the bunch – rooted in phony science and myths about so-called mental illness; dependent on the three other BIGS for its resources; desperate to sell the new DSM and re-coup its $25 million investment. Which is why it’s selling the new DSM for $200 a pop. Which is why it’s hired Bill Clinton as its chief huckster.

So you’ve picked the right target – a desperate and diminished APA, whose credibility is at its lowest ebb in forty years, thanks to the metaphysics it’s attempting to peddle as science. Your mission – our mission – is to continue to attack its credibility; to question how and why the BIG THREE – GOVERNMENT, INSURANCE, PHARMA – are so willing to invest so much confidence and so much money in such a flawed institution.

But that’s another story, one that we’ll see played out as the four principals and their lesser acolytes kick around next year’s political football, the ICD-10. As for the NRA … ditto. Neither the NRA nor the APA will prevent another Newtown, another Aurora, and folks with diagnoses will again be scapegoated. Putting an end to needless deaths and ruined lives will require life-long commitment and ongoing struggle. I see you all in my mind’s eye …

In the struggle, Jack Carney

* * * * *

References – Section I:

* * * * *

Division of Clinical Psychology, British Psychological Society, DCP Position Statement on Classification: “Time for a Paradigm Shift” May 13, 2013,

Doward, Jamie, “Psychiatrists Under Fire in Mental Health Battle” The Observer, May 12, 2013,

Doward, Jamie, “Medicine’s New Battleground: Does Mental Illness Really Exist?”, TheObserver, May 12, 2013,

Frances, Allen, “Does the DSM-5 Have a Captive Audience” Huffington Post, May 16, 2013,

Insel, Thomas, “Transforming Diagnosis” April 29, 2013,

Insel, Thomas, Lieberman, Jeffrey, “Joint APA & NIMH Statement – DSM-5 and RDoC: Shared Interests” May 14, 2013,

Johnstone, Lucy, “UK Clinical Psychologists Call for the Abandonment of Psychiatric Diagnosis and the ‘Disease’ Model” Mad In America, May 12, 2013,

Kirk, Stuart and Kutchins, Herb,  The Selling of DSM: The Rhetoric of Science in Psychiatry New York, Aldine, 1992

Spitzer, Robert, DSM III Casebook, American Psychiatric Publications, 1981

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So what this means, then, is that this inflatable giant has one particularly sensitive vulnerability—what we could call the “needle of truth.” If the mainstream population really knew and understood and were able to integrate the many truths and research studies that so many of us who are active here on the MIA forum are familiar with, I can’t imagine it would take very long at all before the “giant” succumbs to this sharp needle of truth.  Pop!

So how do we pick up this needle of truth, and how do we jab the giant with it? Well, to begin with, this forum itself (Mad in America) has naturally evolved as a hub of truly inspirational people who have been working hard at sharpening and polishing this needle. I’m enormously grateful to Robert Whitaker, Kermit Cole, and others involved in establishing this forum. It’s been meeting many of my needs in a big way, including shared reality, open-minded exploration, mutual support, and hope. It’s also strengthened my own sense of hope and inspiration, especially during those difficult times when strong waves of hopelessness and futility move through me.

To give an example of such a wave (just one example of many), just last week, a new client who came to see me in my practice as a clinical psychologist informed me that he had recently gone to a doctor to discuss his difficulty with sleeping. What kind of support did he receive? Prescriptions for Lorazepam (a benzodiazapene), a nonbenzodiazapene hypnotic (sleeping pills), and Seroquel (an antipsychotic). Upon hearing this, I was struck by yet another wave of hopelessness. Wow, has it really gotten this bad? But then I recalled the many people who are active here (on MIA) and in other similar groups I’m connected with — people who really get the absurdity and tremendous harm of all of this —and some sense of hope returned.

One particular avenue of inspiration that has developed in me is a desire to devote some of my time and energy to community outreach, and it strikes me that we — the members of this forum — are in a unique position to create some real waves in the field by supporting each other in developing new community outreach projects and strengthening already existing ones. Of course, I recognize that much of this type of work is already being done here, and yet I also recognize that there is so much more that we need to do if we really want to take down this giant. So I’d like to share some of what I’m doing and invite others so inclined to chip in and/or share their own ideas and projects that they’d like some support with (please feel free to use the COMMENT section below for this).

So far, my own personal outreach has consisted of attempts to reach out to the mainstream population at large and to other professionals and academics in the mental health care field (which was the motivation behind the publication of my book, Rethinking Madness, and my continued writing and speaking in other forums and venues). For some time now, my time and energy have been stretched a little thin, as I’m sure are many of the other members here, so my own activities in this regard have taken something of a back burner. But lately, I’ve begun exploring ways of trying to get more involved again, and in particular, ways to hone in on the groups who I believe are the most instrumental in keeping the biopsychiatric paradigm so entrenched within the mainstream culture —groups such as mental health care workers, members of the pharmaceutical industry, and family support groups such as NAMI.

In my explorations of possible outreach projects, it’s occurred to me that internet discussion forums have grown exponentially in the past few years and many of them offer really good opportunities to target some of these groups more directly. For example, I’ve discovered that NAMI has quite an active group on LinkedIn (with over 10,000 active members), and last week I decided to use my recent blog posted here on MIA as an opportunity to present an alternative paradigm to this group and invite discussion. As many members of MIA must know, NAMI members tend to be among the most impassioned “bible thumping” advocates of biopsychiatry out there, and yet there are signs that some serious doubts may be creeping into their “faith,” especially when we consider the fact that Robert Whitaker has been invited to speak at their annual conference next month.

For those of you who don’t know, the way that these discussions on LinkedIn work is that for each comment a particular discussion receives, a mention of the article is made in the “Latest Updates” column at the top of the page, and a given commenter will also be listed in the “top influencer” column (also  at the top of the main page) upon making a relatively high number of comments (I became listed here for the NAMI group after making only about 4 comments over the week). Also, each new discussion is posted at the top of the page and also emailed out to each member. In other words, it’s really not that difficult to create some significant waves and draw some attention, even within a group as large as the NAMI group. So I’d like to encourage anyone who is so inspired and who has a little time on their hands to take advantage of these ever increasing opportunities and consider jumping in on my existing discussion with the NAMI group, start new discussions in this and other similar groups, and/or share similar groups, discussions or other similar projects with the rest of us (again, feel free to use the COMMENTS section below for this).

The recent series of highly respected groups repudiating the DSM, the acknowledgment of a continued lack of evidence for the biopsychiatric model by the king drug pushers themselves (the APA), and now clumsy attempts at backpedaling all suggest that we may have some of the largest advocates and pushers of the biopsychiatric model “on the ropes.” Call me overly optimistic, but I’m pretty sure we’re seeing evidence that the “giant” is losing its balance. Right now may be one of those rare opportunities to go for the “knockout” blow. Sure, I know that it’s a David vs. Goliath battle, and I’d have a difficult time arguing with anyone who would accuse me of being naïve and even irrational in my belief that it’s possible to convert the biopsychiatric “believers.” But what have we got to lose? After all, David did take down the giant in the end.

The post Taking down the Giant: A Call for Increased Community Outreach appeared first on Mad In America.

In NIMH director Thomas Insel’s late-April statement, the DSM is characterized as having poor “validity.” This means, plainly, that there is no consistent evidence that the DSM classifications of experiences deemed “mental disorders” correlate to any specific or measurable process of disorder. The diagnostic categories of the DSM are based on subjective symptoms, for which there are often no identifiable causes.

The dominating reign of the DSM has been dealt what may well be a terminal blow. There may not be a DSM-VI.  Our entire “mental health” system may need to begin considering vast revisions of coding and service. Because the DSM has been publicly declared (by a presumed authority, the NIMH) to lack validity, anyone who uses the book in practice or policy will have to think hard about the integrity of the ethics that govern their professional practice. In some ways, the NIMH announcement was a great boon to the efforts to build support for alternatives.  In other ways it is an insult, given that advocates and activists have been criticizing the DSM as unreliable, inaccurate, distorting and ultimately useless for decades.

The DSM is on its way to being history. However, with the NIMH announcement came a new set of research domains that will affect the future of sciences pertaining to the human condition, with a specific focus on identifying neurobiological markers and processes that may be linked to manifest human difficulty that is currently seen as “mental illness.”

Yet, recent reports from the American Psychiatric Association clearly state that there is not a biological marker that can be identified using neuroimaging, indicating a vast abuse and squandering of funds that could have actually supported the research and development of additional evidence-based healing practices. Research that has purportedly identified variation in genetic or neural function or structure is minimally informative, as any phenomenon of the brain is:

A) dependent upon a great number of variables

B) likely to change, given the fact that we are in a constant state of growth and response

So, where does that leave us?

There is a fear that the research directions charted by the NIMH may lead to a hypermedicalized view of the human condition, and that many more billions of dollars will be spent developing invasive technologies designed to affect our neurobiological function, possibly in ways that may be toxic.  Given the exploitative collusion that regularly happens among researchers and industry, this is a legitimate concern.

“Scientific” research has, historically, been the driving impetus for vast and insidious human rights abuses and the formal literature has contributed mightily to distortions in our conceptualizations of normative function and expression. This is not, of course, to dismiss “science” or present an “anti-intellectual” view of the existing body of literature. However, a systematic review of said literature will reveal vast reams of flawed methodology, theoretical bias, and a dearth of the simple logic that informs us that our lives are complex, messy, and dynamic, with multiple variables acting upon one another in ways that make it difficult to generalize any conclusions across large portions of the human population.

Two people (or 7 billion people) can be genetically related and be, within their subjective experiences, very different. They can go through the same tragic events and experience them uniquely.  Even people who share tendencies of experience are not the same and what might be helpful for one person may prove to be unhelpful – or even harmful – to another.

However, in spite of the barriers to generalization, there are correlational trends among people who experience struggle between themselves and their life circumstances, with potential causal links between trauma, stress, and psychosocial dynamics as these factors relate to difficulty in experience. We are all affected differently by constructs of economy, opportunities for education, and the other factors which shape the landscapes of our lives, be they plush or war torn.

There are numerous psychosocial/emotional/existential/spiritual theories about what may cause difficulty in human experience. Entire fields of science and inquiry are based on hypotheses of the mind and musings on the heart. Obviously, we are more than our neural connections. Yet, we do have brains. We do have neurons and synapses, enzymes and chemicals, areas of tissue that mysteriously hold networks of memory, others that map our anticipations.

Do we need to know the specific neurological correlates of internal conflict?

How does the fear of being alone pass between our synapses?

Does hope light up our brains, or just our hearts?

Is it even possible to know? Is it important?

Perhaps it would be more useful for us to focus on what seems to help, rather than trying to identify some elusive shared trait among those who struggle for some reason or another with their human experience. By establishing evidence of the efficacy of alternatives, the “problem” may become less important than the possible (or obvious) solutions. It doesn’t take a Ph.D to know that when we are empowered, accepted and loved for who we are we tend to feel better and enjoy our lives more.

For the sake of fairness and acknowledgement of reality, there are some instances that neurological duress or wounding can be implicated in difficulty within our human experiences. The effects of chemicals and certain elements (such as illicit and pharmaceutical “drugs” and lead, for example) can wreak havoc on the functions of our brains, as can (actual and measurable) diseases like cancers of the brain. Even in the absence of drug effects, the neurological effects of an actual disease, or environmental toxins, some people do experience some significantly difficult recurring experiences. Sensory integration issues, distinct features of processing or thought tendency, and regulation of emotion and energy are genuine and very real struggles that many people often attribute to neurological differences.

First and foremost, difference is not disease. This cannot be said enough. Difference is not disease, by definition. Some differences are caused by diseases, but difference itself is not a disease. A disease requires an evident process, with indicators and predictable outcomes. Based on those exceedingly simple criteria, the bulk of challenging human experiences cannot be attributed to anything remotely resembling a disease.

Some people do have what they have found to be characteristics of experience that can be, in part, attributed to elements of our human function that are considered to be at least somewhat neurological, such as sensory integration. These differences – some of which can be experienced as disabling depending on the expectations that establish “normal ability,” contributing to severe sensitivities and learning differences, among other struggles – are often identified through neuropsychometric testing (e.g. IQ tests) of some sort. These measures are often problematic themselves. Yet, they do measure something, and those inventories of attribute do have the capacity to inform us of some aspect of our human experience, even if it is only whether or not we “test well.”

Acknowledging neurodiversity is in no way endorsing a biomedical disease model. There is an entire movement of people who identify with concepts relating to neurodiversity, which acknowledges that some people do fall well outside of the range of statistically normative neuropsychological features and that these variances from neurotypical function are a good thing, rather than a disease. The human species is diverse by nature, and rightfully so. We encompass artists, musicians, architects, astronomers, storytellers, engineers, farmers, cartographers and healers…and we all, as humans, struggle.

Yes, for some the struggle is tremendous.

Yet, just as we all struggle, we all also, as humans, have the capacity to live our lives well to the best of our abilities, which ought not be impeded or discouraged by circumstance or belief. We grow and change. We find out, through trial and error,  who we are, what we like and what we are scared of. We learn what works for us and un-learn the belief that we can’t learn.

It ultimately may not be important for us to know the specific rate and content of exchange across neural networks. Even if we figure out how something works in one person, or even in a supposed group of people, the variables that shape our lives and experience are complex. It is difficult to conclusively generalize any broad truth about why we are human in the ways that we are and what the future may hold for any of us.

If the NIMH spent as much funding on accessible, trauma-informed, integrated, choice-driven community wellness centers and lobbying for better quality of life opportunities as they do trying to find evidence of elusive brain diseases, we would not have the “mental health” crisis that we currently have.

We would, perhaps, have more of what we deserve, not as people identified as having a “mental health disorder” or as people that could “qualify for disability” but as human beings with universal human rights.

Do we really need research to tell us that kindness and compassion are healing, that options are good and that the more perspectives we have access to the better able we are to figure out a meaning and strategy that may best work for us?

Due to the resources afforded to the pharmaceutical industry, state institutions and the military, research funding has been unequally distributed. Therefore, the ideas and theories that have been formalized as “science” are largely representative of the interests and paradigms that research institutions and grantors may ultimately profit from.  In what directions will the NIMH fervor for a new nosology drive this science devoted to answering questions that don’t need answering, or which cannot be answered by a medical test? What good comes about from looking for a disease and what will they make of what they may find? Are so they so desperate to find something that they would be willing to create disease where there is none, simply so that they may find it?

So far, they have found, for all their sophisticated techniques, surprisingly little. There are no lesions, no consistent protuberances, no void grey areas of neurological scarring. Potential variations that have been identified could have been caused by anything, and may simply be the fact of human diversity in function and expression.

So, is there anything good or useful that could come out of new NIMH research directions?

Well, some innovative researchers may be able to secure some renewable research grants to conscientiously and strategically contribute to the body of literature on alternative non-invasive evidence-based practice, perhaps relating to the neurological benefits of naturally occurring micronutrients in delicious food or the measurable effects of mindfulness, stress reduction and life enjoyment programs. Perhaps someone could conduct research on the beneficial neurochemical effects of hanging out in fields with friends, laughing.

Researchers may gain insight into the effects of stress.

They may learn more about the specific ways that neuroleptics damage our brains.

All in all, we may not need research to tell us what we most need to know about human struggle and human healing, which is simply that both phenomena are intrinsically human and, by virtue of that, we are all different in what hurts and in what may help. It is, however, fair to conclude that for most people fear can be toxic and that love/acceptance/nurturance can be healing.

I do believe in the potential for bad ideas and dysfunctional systems to destroy themselves and I am hopeful for the development of an ethical science of the human condition. At the basis of this science would be a commitment to framing the human experience in a manner which is realistic and informed, with a resolution to not call things diseases which are not diseases. I am hopeful that young scientists paid attention in their philosophy of science classes, their ethics courses.

To me, it seems that it would be far more interesting and exciting to destroy a useless and harmful paradigm than it would be to try to prove evident mistruths. It would be a lot more fun to research the neurological characteristics of a life well lived than it would to be to spend life sitting in a laboratory looking at numbers about some poor little kid’s dopamine levels as they may be affected by neuroleptics.

*Laura Delano’s excellent recent post “Mental Illness,” the DSM-5, and Dreams for a Post-Psychiatry World explores the implications of recent shifts in the direction of formal understandings of human struggle as our realities relate to misinformation, oppression, and multisystemic trauma. In the comments is a really great discussion of the body, mind, heart, environment dynamic as it relates to potential hypermedicalization of our perspectives of human experience.

Here is a poem that I wrote about scientific paradigm shifts as such things may relate to brain research and a picture that I drew during a period of involuntary outpatient commitment, while I was thinking about how strange it sometimes is to be human.

The Scientist’s Lobotomy

Did you look inside her brain

at that place

where you imagined

all those demons, that disease?

Was her skull split open

like a shell

for its soft fruit

to be examined

by the stainless tines

of your science?

What did you find, in that shimmering inside?

Was it not so dark as you thought it might be?

Did you see, there in the folds, the pits that you had pictured?

Did you find

the small empires

you expected

in a chemical rot and lesion?

Did you swim

in the swamps

tucked into the coasts between

this region and that region?

Were there valleys and layers, tangles like cities on a roadmap?

Or was it softer, smoother…perfect?

Did the gentle pink edge remind you of a shell

that you once picked up from the shallows of the ocean?

Did the salt on your lips taste like waves?

There were patterns in the sand and you traced them

as mountains.

You saw the pools, your eyes reflected against the sky reflected and…

…you knew the truth.

You found it in that shell that held the sunset.

That soft slick bruise

of grey and blue

that felt, to you,

soft like your scalpels

could never be.

For a moment, the whole world was there

and you felt

the sound inside

like music.

It’s so easy to forget

that you wanted to live

inside that place

where the ocean roared

against your ear

for you alone to hear.

When you looked at her brain did you see

the landscape of her memory?

Was it a castle

a library

a junk store

a field?

Was the universe in there?

Did it look like sand?

Or did it look like stardust?

Does stardust look like sand?

…or did you only see a small grey region, asleep

and of a certain weight

that you carved out

and placed on a scale?

Was it barely alive at all?

Did you find, in her crenellated warmth, the place

where voice is born?

You never heard it.

She never spoke.

You never listened?

It doesn’t matter now.

You’ve forgotten

what it was

that you were looking for

in that space behind her eyes.

Do you see that, even sleeping, her mouth looks like a bow?

You have no way of knowing that as a child

she sang the same song

over and over again

because it made her happy.

Tell me, when you pulled

the two halves apart

did they make

any noise at all?
Tell me, what did you see inside?
Did you find God?

Or did God find you?

The post Difference is Not Disease:
Scientific Integrity, Human Diversity, and the
Potentially Bleak Future of Psychiatry appeared first on Mad In America.

It has been shown that persons who have experienced extreme trauma tend to be more likely to have a sense of purpose in life! ⁽¹⁾

Imagine being able to live harmoniously amongst others without fear.  I cannot.  Cannot imagine it even a little bit. What can be created for people in my camp? People who are sensitive and had so much trauma in childhood that life among others is highly stressful, scary and worrisome? I’m allowing myself sanctuary-time alone, quiet time, time to write… yet… will things ever be different? Will I ever find my niche in this world, where I feel safe and able, valued and worthwhile, loved, adored and comfortable? I have no idea. And what about all of the others like me in this regard? I know there are plenty of us and our numbers are growing. Getting older seems to make things harder; I feel less resilient (in some ways).

I know I am not alone in this feeling. I see it in many, this loneliness. I see it and know it in all kinds of escape mechanisms, I see it in our eyes, our stumblings, our yearnings and reachings out. I see it in that we are writing as there is so much to say that is hard for us to articulate vocally, aloud. Every one of us is vulnerable to this feeling as well. A partner can die at any moment, or a relationship can go sour, friends can move away; we ourselves can be called to move. It seems our best social safety net is a larger number of connections, yet any of us can feel lost in the sea of large groups, incoherent “communities,” friends who are quite different from ourselves.

From these differences and challenges comes growth, yet in order to truly grow, we must crack at the core, we must reform, we must let new light into our dark places, our soil, the seeds deep inside that were planted long ago. This process shakes us at our core if we are willing to go through it. It cracks us and can feel immensely scary, yet we have no choice whatsoever – it’s life or death, we need to let new air in.

There’s a part of me that is utterly indignant, that KNOWS I should never be told (even by myself) to open up and trust anyone after what I have gone through. There’s a part of me that hates people who had happy childhoods, or for whatever other reasons are able to trust others and live amongst them in a way that feels safe. There’s a part of me that knows those people look at me with judgment, at least some of the time, some of them do, and that part of me wants to SCREAM. And cry. Because it is that judgment that limits me more than anything — that oppression which I have now internalized that tells me I must conform. And since I know I can’t, I feel doomed to die a failure some days. I feel certain I will never succeed by their standards, yet their standards weren’t made for me.

There are many who feel this way, no doubt, and when I talk to them I know they are far from failures. Just like when I write, “I feel doomed to die a failure,” there’s a wise woman in me who bursts out belly laughing. My eyes tear and I’m also heaving and wailing at once since dying a failure isn’t an option for me. It makes me cry to know in my bones that I have already done a lot of what I came to this earth to do, and the whole “die a failure” concept needs to die. Yet I know I am not alone, I know it is alive in many of us.

I wish there were something I could do about all this. If I could move this mountain, I’d really die a success. I want to move it for each and every one of us who feels doomed to misery due to programming in our psyches that happened early on and feels insurmountable (sometimes). I want to take away every limit there is or seems to be in the way of each and every person being healthy, strong, free, and fully embodied and alive. I want to measure the distance between here and there so I’ll have a map, a time frame, a sense of something that will, of course be called senseless.

Extreme trauma turns our mind inside-out. It makes us senseless. This may get us labeled insane, but I stand behind the fact that senselessness has within it the best gifts we have to offer. The same trauma that turns our minds inside-out and makes us feel incapable of action, turns our minds around just enough to open us up to something larger. This something larger is vision, it’s prophesy, it’s being a knower and seer, it’s seeing beyond the veil of “reality” as it presents itself and seeing something others have not yet seen. This is true inspiration and if we find it in the tunnels, we have found our purpose in life, our destiny. We all have this within us, yet for some horrible reason, it can take trauma to bring it forth. The meaning in the madness, that could have never been found in the humdrum consensual reality. The consensual reality we sometimes feel we’d settle for because the alternative can be agonizing.

Let’s face it: consensual reality is straight up boring. If almost everyone experienced life the same way, we might all want to bolt. We’d be bored out of our minds (with their perfectly predictable chemical reactions and neurosynaptic responses keeping us ever stable all the time). It is only when consensus is abandoned that any individual can find something new and find true, lasting motivation.

Hence the mental health system is a paradox, and a dead end, asking people to conform AND be motivated and purposeful in that conformist state. I just want to say to everyone, including myself, REBEL!!!!! Be yourself, however unhappy you may feel! For it is only in your very own journey through your very own tunnel that you will find your very own purpose for being here. Prozac may help you find someone else’s life purpose (or rather, put money in someone else’s pocket), but that will never be a substitute for your own. True purpose leads to true motivation and the only place to find that is in the tunnels of your very own consciousness.

We are each unique and have something different to bring to the table, which is inherently non-consensual in its reality, and at its best senseless, being a little more important than “sanity.”

Note:

The post Purpose is Inherently Divorced From Consensual Reality appeared first on Mad In America.

In the discussion that followed several people stepped forward to defend CBT as a valuable therapeutic approach that in the right hands can be used to facilitate positive change. Some tended to exaggerate its importance and promote its use as almost some type of liberated way of thinking about the world; an approach able to solve all human emotional problems without referencing any type of moral evaluation of the material conditions of life giving rise to certain types of thoughts and behaviors in this world. So let’s take a cold hard look at what CBT really is, and what it is not.

To make this analysis, let’s imagine you are a therapist who is given the task of providing therapy for Ariel Castro (the recent accused kidnapper and rapist) to help him deal with suicidal thoughts over being universally hated and most likely condemned to a life sentence or the death penalty. Now think about the absurdity of doing CBT in this situation; that is, analyzing his negative thought patterns to help him deal with his one-sided thinking so he can better adjust himself to his (not so nice) life conditions.

Even better, imagine you’re given the task of providing therapy for Dr. Joseph Biederman (the key promoter of children’s Bipolar diagnoses) who perhaps is dealing with a severe depression related to negative public opinion regarding the enormous damage his work has done to tens of thousands of children (unfortunately his depression is a made-up scenario). Again you have the assigned responsibility to use CBT to help him see beyond the “negatives” in his thought patterns to find the “positives” in his career in order to help relieve his depression so he can get on with his work with great enthusiasm.

And even more controversial, let’s say you have the task of providing therapy using CBT for President George Bush several months after he launched the Iraq war; imagine for a moment that he has become quite depressed related to the growing mass demonstrations and the grief displayed by the parents of dead American soldiers coming home in coffins on a daily basis. Your job is to help him overcome his depression so he can get back to being The Commander In Chief.

Do you now get a clearer picture of the serious limitations and pragmatic and amoral nature of CBT? If you think like me, you would absolutely refuse the task of helping all three of these criminals attempt to solve their particular emotional problems. In my way of thinking if you had to choose, Ariel Foster would actually be the least difficult of the three to work with; after all he is in jail and can no longer harm anyone. In addition, his crimes against humanity (in my eyes), as horrible as they may be, actually fall short of his cohorts in this analogy.

As far as Biederman and Bush are concerned, I would actually hope they would become even MORE depressed NOT LESS. I would want this to become the outcome not because of hatred (although hatred is not wrong to feel towards these individuals) or revenge (I do understand why people might want these people to suffer, but I would struggle to resist those impulses) but instead for the morally justified reason that the MORE DEPRESSED they become hopefully the LESS EFFECTIVE they would be at performing their jobs, and thereby perhaps lessen the damage they can do to the masses of potential human victims. Whether or not they are nice to their own children or happen to be loving toward their dogs, this is of no relevance to my overall opinion of them or in any kind of objective analysis of their overall social role in the world at large.

Clearly I am responding from a position that Biederman’s social role as a major spokesperson for Biological Psychiatry is indeed causing great harm to thousands of children (and others) and he should be prosecuted and punished for the deaths and psychological damaged perpetrated against innocent children.

And in the case of George Bush, in the reactionary cause of imperialist empire building, he launched one of largest drive-by shootings in modern history, essentially almost killing a country by destroying its infrastructure, (including food distribution, medical services and electrical power etc.) creating the material conditions for the deaths of several hundred thousand Iraqi people (500 thousand may be an underestimate of human lives lost), and in addition, the lives of several thousand American soldiers.

It could be said that all three of these people have literally lost their humanity, but I don’t believe it is my job to spend one second attempting to restore it. My time would be much better spent exposing their crimes and organizing people to create the material conditions in the world where they (and others like them) can no longer have the ability to carry out further crimes against humanity; and in the long run help create a world where there is no longer the material or psychological basis for people to ever lose their humanity.

However, if you had a CBT therapist who was a believer in Biological Psychiatry’s Disease/Psych drug model of treatment (a completely different interpretation of the same material world that gave rise to my way of thinking) he/she might have no problem working with Biederman to help him overcome his “negative” thinking and thereby, not only justify his psychiatric work diagnosing and drugging children, but overcome his depression to rededicate himself to his “important” work “helping” his patients.

And if a backward thinking CBT therapist believed that it’s America’s moral destiny to police the world spreading “free market” capitalism and the Christian way of life throughout the entire planet by toppling any political leader standing in its way, and ultimately justifying the deaths of hundreds of thousands of innocent civilians for this cause, then he or she might jump at the chance to challenge the “negative” thought patterns of George Bush and help him overcome his depression and resurrect his “moral” courage to prosecute the war effort.

So let’s get real about CBT. At the beginning and end of the day CBT is nothing more than a pragmatic and sometimes useful tool that has serious limitations due to its’ fundamentally “idealist” philosophical origins in understanding the world. CBT comes out of the school of thought that says we are what we think we are, or if we take it a step further, “I think therefore I am.” This way of thinking implies that there is no material reality independent of our thoughts; so there can be multiple realities based on any one person’s interpretation of the world. This is in direct opposition to a “materialist” philosophical perspective that says “I am therefore I think.” The latter view postulates that thoughts, ideas, and theories come from one’s interaction with the material world. If that world is, in fact, oppressive to the humans interacting with it, this will be directly reflected in the thinking and behavior of those human beings. Of course when ideas (emerging from interaction with the material world) are subsequently put into action they can influence and change the material world in an ongoing dialectic or spiral development of change.

CBT, being part of the “idealist” school of thought, tends to sever the relationship between the specific nature of the material conditions in the environment that gives rise to a person’s thoughts, and leaves it up to the interpretation of the listener (often a therapist) to determine whether or not the environmental source of those thoughts was actually traumatic or oppressive or more positive and humane.

So in reality the pragmatic value of CBT as a therapeutic method (in the short run) can be achieved without any type of moral compass or historical barometer to determine if the end result actually advances the cause of humanity, or if it only meets the immediate selfish needs of its user in the moment. In other words, we need to ask the important question: for whom is the CBT method being used, and for what purpose?

Yes, CBT can be defined as a pragmatic tool. However, should we somehow imply that it is a liberating program and ideology? Definitely not. In the right hands, in the right circumstances, and in a micro sense, CBT can help people overcome specific problems; in the wrong hands it can actually do great harm.

We could apply the same morality that condemned psychologists who helped train and evaluate the CIA’s water boarding interrogation methods to those that would help people on the wrong side of history feel better about themselves and function better in the world by using CBT. In a macro sense, the only way this can ultimately be evaluated is by making an historical examination regarding what political and social movements (and the ideologies and ways of thinking arising out of and promoting them) are truly advancing the cause (conditions of life) for all of humanity and therefore should be supported; and those that are moving things in the opposite direction and therefore should be opposed. This is not an easy task, but one that CAN and MUST be done.

Twenty two years ago I was trained as a therapist with a specialty in addictions. I was exposed to multiple theoretical and practical approaches to helping people overcome problems. This training included Rogerian, Psychoanalytic, Object Relations, Reality Therapy, Twelve Step, Rational Emotive Behavior Therapy, Family Systems and Cognitive Behavioral Therapy, to name a few.

In my work I probably have used bits and pieces of all of these methods and theories, but it would be absolutely foolish to think that one therapy approach provides even close to all the answers to the human condition. There are clearly other liberation ideologies that have led to major advances in human social organization and morality that have more potential revolutionary content than those necessarily coming out of the field of psychology.

In fact it was my preceding 20 years of experience as a radical political activist (coming out of the late 1960’s) that actually prepared me in the best ways to be a “coach” or a so-called counselor to people experiencing problems in life. These experiences trying to change the world certainly made me want to pay very close attention to a person’s narrative and truly understand the conditions of life that gave rise to their thinking and behavior.

The critical thinking skills promoted among radical activists allowed me to very quickly migrate to the critics of the medical model and determine that Biological Psychiatry was an oppressive paradigm of treatment. In 1991 I even wrote my Masters’ thesis on the dangers of psychiatric drugs after encountering the work of Peter Breggin. However, I must say that it has been my recent exposure to the survivor movement through MIA that has taken my critique of Biological Psychiatry to a whole new level and renewed my activism and desire to radically change the world.

Working as a therapist in community mental health for 20 years I have sat with people who have experienced so much trauma and negative experiences in life that I felt as though I had absolutely nothing to offer them, other than to act as a witness to their personal horror and express my sorrow that they had to go through those terrible experiences. In those moments I have even thought to myself “if that was my life I would absolutely find it unbearable and most certainly consider ending it all.” Their resilience to survive and go on another day would literally astound my own sensibilities.

In those situations if I had somehow attempted to apply CBT to help get that person to focus on evaluating their “negative” thought patterns and look for and reframe the “positives” in their thinking, this would have been totally absurd and perhaps even harmful to that person at that moment.

In another example, I have worked several years with a woman who has experienced trauma, depression, multiple losses, and a series of dysfunctional relationships. She told me a year ago that the most profound moment in all our therapy together, after more than 6 years of work, was when she saw me shedding tears as she described the time when she had to put down her 13 year old beloved dog.

A final example might be those people I’ve seen in counseling who say that in the throes of some deep emotional crisis they actually hear my own words reverberating in their head guiding their actions. I often don’t even remember exactly what I said at that particular moment in therapy, and have to recheck the content of those words to be reminded of the power of my position in helping people in extremely vulnerable moments in their life.

It is these types of experiences in counseling that should truly humble us as we have been so privileged to share a window into the lives of people experiencing deep emotional suffering, and who are bravely attempting to solve the problems of life we ALL face on this planet, each of us learning from the other as we go. It should also force us to go through some type of continuous self-interrogation of our own beliefs and values and how they may be influencing the beliefs and actions of others. This all reminds us of our tremendous responsibility doing this kind of work.

I gladly look forward to a time in history when this type of counseling or “coaching” type of relationship between human beings will literally wither away and no longer be needed. We all have much work to do to radically transform the material world, and in the process transform ourselves and our ways of thinking, as part of the achieving true liberation.

The post Cognitive Behavioral Therapy:
The Good, The Bad, The Limitations appeared first on Mad In America.

Pellagra (meaning rough skin) was apparently first described in 1735 by a Spanish physician, Don Gasper Casal, and was called “mal de la rosa”, due to the characteristic red rash on the hands and feet. At the time, the cause was unknown but it was associated with poverty. Cases in the US were first reported in the early 1900s, where there was a pellagra epidemic in the southern US. Although linked to the poor person’s diet (often consisting mainly of corn products), the going wisdom at that time was that it was contagious (Pellagrans, as they were called, tended to live in close proximity) and was perhaps hereditary (sound familiar?).

The relevance of pellagra to psychiatry is that it also can present with psychosis, obsessions, mania, depression and confusion. It involves the main organs of the brain, the gut and the skin – many referred to the 4 Ds: dementia, diarrhoea, dermatitis and death.

In 1914, Joseph Goldberger, a physician and clinical epidemiologist, was invited to investigate the epidemic. Careful reviews of the literature and cases indicated to him that pellagra was a dietary disease, not an infectious one. Only poor people seemed to get it and they often had a diet that consisted of Indian corn. Cases were being reported in hospitals whereby the patients, mainly eating a monotonous corn-based diet, would get the disease whereas the nurses, despite daily contact with the patients, would not. The nurses apparently received a more nutritious diet. Outbreaks appeared in mental institutions, orphanages, and cotton mill villages where the diet was considered a monotonous 3M diet – molasses, meat and cornmeal. Similarities with European pellagra led many to conclude that the disease was caused by spoiled corn.

Following his theory that the disease was a dietary one, Goldberger began running “trials” in different orphanages by manipulating their diets: those given fresh meat and legumes experienced no recurrence of pellagra. He also conducted experiments in which he showed he could induce pellagra in healthy men (usually prisoners) by feeding them a corn-based diet. Through observation and controlled experiments, by the 1920s Goldberger had established that pellagra was a disease of a faulty diet caused mainly by extreme conditions of poverty.  These experiments convinced him that infection was not the form of transmission and in the early 1920s he began to search for the specific nutritional deficiency.

The part that we really like about this story is that Goldberger was so confident in his theory of pellagra’s etiology that he was willing to risk sacrificing his wife’s health to prove it. Despite his repeated controlled experiments using diet manipulation, many authorities did not believe his theory and people continued to hold to the prevailing wisdom that it was infectious. And so he found 16 volunteers (his wife being one of them) and exposed them all to the blood, urine, faeces, and epidermal scales of pellagrous lesions and not a single one of his volunteers developed pellagra (or else we might not be telling you this story). Goldberger spent the rest of his career and life trying to isolate the ingredient that was causing the condition. Although he died before figuring it out, it wasn’t long before another scientist, Conrad Elvehjem, determined that niacin was the essential dietary factor.

Fortification of food with niacin did not occur until 1941. It was estimated that there were over 3 million cases and over 100,000 deaths in America in the 40 years until its true cause was determined.

The impact of Goldberger’s discoveries has to be understood in terms of the incredibly high prevalence of this problem: it has been estimated that fully 1 out of 5 people admitted to mental hospitals in the 1930s were there solely because of pellagra psychosis, an easily preventable/treatable nutrient deficiency. And also, returning to our previous blog on the wisdom of our ancestors, until pellagra was essentially eradicated by fortification of foods with niacin, the Diagnostic and Statistical Manual (DSM) acknowledged that nutritional deficiencies could cause mental symptoms: “psychosis with other metabolic or nutritional disorders (including pellagra)”. It is interesting that the current edition of the DSM no longer refers to metabolic disturbances as etiological factors.

But we leave the reader with this thought:  while niacin therapy has been accepted now for the eradication of pellagra and pellagra-psychosis, is it not possible that a combination of nutrients may have had far superior effects more broadly? And if Walter Mertz was correct when he declared in 1994 that the era of one-nutrient, one-disease was over, what other mental symptoms might be eradicated with combinations of nutrients as treatment?

For those who would like to read further about this important historical discovery:

Brown TM. Pellagra: an old enemy of timeless importance. Psychosomatics. 2010;51:93-7.

Rajakumar K. Pellagra in the United States: A Historical Perspective. South Med J. 2000;93:272-7.

The post Jeopardizing Your Wife to Prove a Point:
Pellagra as an Example of Deficit appeared first on Mad In America.

Today’s launch is marked by the appearance of our first eight posts. These posts come from a variety of prominent people in the field, each offering a unique perspective on the current state of diagnosis and where we might take things as we move forward. Importantly, the goal of DxSummit is not to endorse a particular view, but to provide a space for discussion and deliberation. According to the Summit Mission Statement:

Rather than starting from a specific theory about the “right” way to define and treat psychological suffering, GSDA is a virtual arena for the expression of diverse perspectives, a space to deliberate those questions that seem most challenging and, at times, insurmountable. Our ultimate goal is to generate a transdisciplinary, international, egalitarian conversation about the possibility, feasibility, and potential implications of new means for conceptualizing mental distress.

The mission statement goes on to more fully explicate the questions the Summit wants participants to address:

• What is the basic nature and function of clinical diagnosis?

• Is diagnosis necessary for describing mental distress?

• To what extent should psychiatric diagnosis mirror diagnosis in general medicine, and why?

• What is the current status of diagnosis across the helping professions?

• Why have mental health professionals become disillusioned with the current diagnostic systems for research and practice?

• What function does diagnosis have for patients/clients?

• What are the iatrogenic risks of clinical diagnosis?

• How do diagnoses function in larger society and the public sphere?

• Is diagnosis a universal phenomenon? Can diagnostic practice be generalized across cultures?

• How can the major helping professions work together to address current issues in diagnosis?

• What do the various helping professions see as the most important dilemmas its practitioners face regarding diagnosis and what ideas do these professions have regarding directions for diagnosis in the future?

• What are possible alternatives to the DSM/ICD systems?

  • Are these alternatives feasible/practical?

  • What are the political/ethical implications?

  • Should we prioritize validity over utility, or vice versa?

  • Should interdisciplinary scholars (in the neighboring social sciences and humanities) be involved in the development of diagnostic alternatives?

How can you be involved in the summit? Check the site often, read our posts, and get involved in the discussion by leaving comments. We look forward to a generative and exciting ongoing electronic summit. Hope to see you there!

Official Press Release: DxSummit Officially Launches

The post DxSummit Officially Launches appeared first on Mad In America.

This young man, dressed neatly in Monday morning work attire, said his last goodbye and committed suicide surrounded by police officers, firemen, first responders, emergency personnel, school activity buses and hundreds of morning commuters snarled in the traffic jamb created by this very public emotional crisis.

Despite fervent attempts on the part of police officers, and to the horror of those in close proximity, he held his breath and jumped… into seemingly thin air.

I first heard about this young man’s unfolding crisis at a planning meeting for our Family Dens, our organization’s family mental health support groups. Our development director was late for our meeting and arrived in great distress. She had been stuck in traffic and saw this young man’s anguished face as he turned toward her and the police officer just a few feet away trying to negotiate with him.

“He looked just like you or I,” she shared, tears streaming down her face. “He was so handsome, and he looked, well, normal.”

We assured her he would be okay with so many people on the scene to help (not fully thinking through how completely terrifying all those lights, sirens, bull horns, and stopped cars must have been).

We finished our meeting and went home, each of us going straight to our computers to check on this young man and to reassure ourselves everything was okay.

It wasn’t.

This “unnamed man” had, in fact, jumped — a horrific act neatly described in exactly 150 words in only one local news source.

Contrast this coverage with what happened just a few hours later as reports of the Boston Marathon bombing quickly flooded local and national airwaves, news sources, social media and every conceivable conversation.

I learned about the Boston bombings from a feature writer I was talking to about our local suicide just a few hours before.

“This is not a good day,” she said and mentioned she was frantically trying to get in touch with her friend in Boston. I was puzzled until I checked the news and was confronted with images of the chaos in Boston.

Man jumps, news at ….?

It would not be until almost a week later that the second (and last) news story would appear regarding our local suicide, an act of desperation witnessed by hundreds of Ashevillians.

This time, “the unidentified man” got 165 words. And he hasn’t been heard from since.

Curious, this lack of news coverage, given the public nature of this suicide and the reality that more people die each year from suicide than from car accidents, averaging just over a 100 suicides a day, according to the Centers for Disease Control and Prevention.

This silence on the subject is curiouser still in our age of trauma-informed care where we are, theoretically, enlightened enough to recognize the importance of community support and collective healing around public tragedies. And the importance of supporting those who are left behind in trauma’s wake. And the importance of taking collective action to ensure future crises are prevented.

Yesterday, I noticed my local bank proudly displaying a window sticker proclaiming We Are Number 1 with Boston. (And yes, we are).

Meanwhile, our county has the fourth highest suicide rate in the state with five times as many suicides as homicides in 2010. When it comes to these tragedies, we aren’t number 1, we’re number 4.

But we’re not talking about it.

I called my children’s elementary school to see if Mother Bear could come in and do a presentation on mental health with the kids. A couple of classes were on an activity bus  caught in the traffic jam caused by the suicide event.

“Frankly, we’re afraid to talk about it with the kids,” whispered a well-meaning teacher who answered the phone.

As far as I know, they still haven’t.

Last month, Will Hall published an excellent blog here on Mad in America in which he suggested it was time for a new understanding of suicidal feelings.

“We need to speak openly about our suicidal feelings without fear of institutional reaction,” Will asserts.

Speaking openly about those we have lost, and how we are impacted in the aftermath, would be a good place to start. Even learning their names would be some progress.

Many of those lost to suicide remain lost and nameless because of the stigma surrounding taking one’s own life. Family grief, guilt and shame are only made worse in the deadening silence that is created when we can’t find our collective voice and then turn our backs on the suffering of the dead and those they leave behind.

It is time for a new understanding of suicidal feelings and actions.

Perhaps a more open dialogue, without fear of sirens and police and involuntary hospitalizations, would have made a difference for one young man here in Asheville last month. Perhaps more public local conversation would have saved some of the 45 lives we lost here in Buncombe County in 2010. Perhaps a more public and safe national conversation would have saved some of the 22 veterans who died from suicide every day in 2010.

And, lest we worry about what to say, an exploration of the many factors that contribute to suicidal feelings and acts would give us endless fodder for discussion. From poverty and trauma to individual and institutional abuse to existential crises and our “insane” pace of life to lethal side effects of psychiatric over- or mis-medication to lack of compassionate care.

There is so much we could talk about.

Perhaps all that talk might motivate us to actually do something to address our suicide epidemic. It might inspire us to reach out to someone who is hurting or to reach out when we ourselves are hurting. It might even stop us, as a society, from doing things that perpetuate the hurting.

We do have some examples of what can be accomplished when someone dares to talk about these matters.

MIA blogger and mother Maria Bradshaw’s wonderful organization, CASPER, has done much good work in New Zealand and beyond to support an open and healthy dialogue about the rapid rise in suicides and what we can do to prevent more of them. We are grateful to be able to refer families to CASPER when they have lost their loved ones to suicide or have concerns about suicide risks, particularly with regard to children and medications.

But we need more organizations like CASPER and many, many more conversations.

Unlike the one that started far too late and ended far too early on the morning of April 15 at approximately 9:30 a.m.

The post Man Jumps, News at…? appeared first on Mad In America.

Where does that sense of self get lost?  When does it happen?

When I was about 5, I started to turn to food.  I remember standing at a window in my childhood home, hand pressed against the cold glass pane, peering out at the driveway and watching my mother drive away and leave me alone.  The world felt like a pretty unsafe place.  I was not safe.  I needed to take care of myself.  And so I made myself some chocolate milk.  I felt a little better.  I thought I’d get in trouble if my mother knew, so I cleaned up any sign of my little indulgence before she returned.  No one was the wiser.

But all was not well.  The cycle repeated, and at the same time my sense of being wrong in the world grew.  I felt ugly, too big.  I took up too much space.  Why had my father left me and moved out?  Why didn’t I connect and make friends with the same ease that others did?  Why did I seem to think about everything so much more deeply than other kids my age?  Why did I so often feel like I was travelling around in a little bubble that kept me separate from and sometimes floating above the rest of the world?  When I was about 8 or 9, I remember playing at a neighbor’s house on his swing set and having the swing break under me.  I fell  on the ground and felt humiliated.  I took it as proof that I was too big; too much.  I mumbled some excuse and ran home before he could tell me that he now understood that I was disgusting.

When I was in Junior High I started starving myself.  School lunch was torture.  Monday through Friday, I made a charade of pretending to make important phone calls on the payphone in the hall, filling in the gaps by hiding in a bathroom stall.  I did it to stay away from the kids and the food.  The idea of having to ask for permission to take up space at some cafeteria table while displaying the food I was daring to take in was overwhelming.

And when starving would get to be too much, I would return to bingeing at home and hide the material remnants of my secrets in drawers around my room.  When I was a Freshman in high school, I remember coming home from the mall with a friend one day and rushing toward the stairs that led to my room only to have my friend and I greeted by a mountain of those remnants at the top of the stairs.  I was frozen.  My mother had been in my room; searched through my drawers.  She’d created a museum of shame for my friend to see to ‘teach me a lesson’ about my bad behavior.  I don’t even remember what I said or how I made it through that level of humiliation.  It’s a blank.

By the time I got to college, I was pretty confident in my sense that I should be apologizing to people for having to look at me.  I spent a lot of time putting on make-up every day largely because I could ease a bit of that pain in the illusion that there was something of a mask between me and the world.  At some point, I became so convinced that everyone was talking about me and saying how disgusting I was that I stopped going to classes or leaving my apartment and eventually got kicked out of school.

I could tell many parts of my story, including how I made it beyond that point to where I am today, but I won’t.  Not for now.  I’m telling this part at the moment for a reason.  This self-loathing for my own body – my most intimate ‘home’ –  that I so insistently projected onto others is not something I’ve ever completely overcome.  There are many ways in which it was seeded within me, and many experiences that helped its hold on me grow.  But I’m not so special.  My experience in this realm may have been bigger than some, but it’s not that different from many.

Our culture teaches us to hate ourselves; Women, in particular.  Should it be such a surprise that so many of us cave under its pressures in ways that leave us teetering on the brink of diagnosis or falling over the edge into its abyss?  What happened to me that led me to want so desperately not to be connected to my corporeal being is very personal and involves much more than I am sharing here.  However, had I not been directly and indirectly cheered on in my own self-hatred by television and movies and magazines and all the women in my life talking incessantly about how much they also hate themselves, I wonder if the outcome might not have been at least a little bit different.

By the time I was 5, I had also seen plenty of weight loss commercials on television advertising women in bikinis running on the beach.  (I still thought they were too fat.  Their flesh jiggled when they ran.  I didn’t want my flesh to jiggle.)  By the time I was 8, I had already heard friends and family and friends’ families complaining about their ‘too big’ stomachs or butts or arms and what they were eating to be ‘good’ or ‘bad.’  By the time I was in Junior High I was reading articles every week about how to ‘lose that ugly fat.’  By the time I was in college, I felt like I couldn’t even be near strangers without overhearing their own words of self-deprecation every day I entered the world.  And if they were saying that about themselves so freely in public, what on earth were they thinking and saying about me?

I want to plug my daughter’s ears up with cotton and cover her eyes.  I don’t want to have to bear witness to her loss of that care free sense of belonging in this world; of taking up just the right amount of space.  I don’t want to watch her begin to question if she really deserves to be loved.

We as human beings – and especially those of us who are female – need to take this up as a political issue.  We need to understand that when we disparage our own bodies we are disparaging the bodies of those around us and re-enforcing the idea that they should do the same.   We need to know that trite sentiments like, “It’s what’s inside that counts,” (no matter how earnestly stated) aren’t enough because what they’re tacitly communicating is, “You’re right that what’s on your outside is something we’re doing you the favor of looking past.”   We need to realize that when we loudly exclaim how happy we are that we lost x number of pounds after a week-long bout with the flu, that we’re essentially broadcasting the message, ‘skinny at all costs, including your health!’  In my mid-20’s, I went through a volunteer training at AIDS Care in Northampton, Massachusetts and at some point I felt safe enough with the group to share that some dark part of my mind was actually jealous.  I was jealous of people who had contracted the Human Immunodeficiency Virus because they often got to experience wasting – a no-effort, super express pass to skinny.  Holy crap.  What was wrong with me?  What is wrong with all of us?

I refuse to talk about my current-day inner dialogue about my body with anyone.  ‘They’ say that men think about sex every 7 seconds, and I’m probably still competitive with that figure when it comes to disparaging thoughts about my body.  But I won’t speak them out loud.  I will not be a part of passing along that particular societal ill.  And I will not comment on other people’s bodies, even in supposedly positive ways.  And when someone ‘compliments’ me by saying they think I look like I’ve lost weight, I will not respond or – even better – state clearly that I don’t keep track of that sort of thing or that it really doesn’t matter to me (even if not mattering is a wish more than a truth at this point).  And if I’m really feeling saucy, I might try out one of my favorite but mostly unused responses:

“Yes, tomorrow I’ll be cutting off my left leg to drop some more.  Quickest 30 pound loss EV-er!”

Or

“Yes, I’m afraid the cancer has really set in now.  They say I probably only have six months left, but I’ll surely drop at least another 10 before I go.”

That’d stop them in their tracks.

No, I’m not suggesting that weight cannot or should not ever be an issue.  Surely, pharmaceuticals pour on the pounds for people in ways that absolutely do matter.  And, ‘too much’ weight (whatever that actually means for a given person) can bring on a variety of physical issues.  But I am suggesting that teaching body hatred has the ability to make us sick, and that it does the exact opposite of creating space for us to eat and move in ways that actually feel good and support us to be healthy and to look like and be ourselves.

I realize this is a bit of a deviation from the various diatribes about language, psychiatric oppression and misguided diagnosis.  But in the end, it is all related.  It is related because anything that fosters a sense of alienation for us from ourselves and each other also fosters the same kind of pain that so often ends up becoming labeled as ‘symptom’ somewhere down the road.  It is related because the same kind of cultural force used to define what makes our bodies ‘acceptable’ comes from a very similar place as the cultural force that also judges and evaluates our behavior and minds.  And let’s be honest.  Body hatred breaks down our most basic resiliency and leaves us all the more vulnerable and susceptible to all the other pervasive negative messages – including pathologization and diagnosis and the belief that we need to be treated for how we are ‘wrong’ on the inside because of how we are impacted by all the awful things happening on the outside around us.

I hope that those of you reading this will consider how you think inwardly about yourself, but even more importantly, how you talk outwardly about yourself and others.  I urge you to give up the conversations about your latest diet or weight loss (especially in front of children!), to stop making public remarks about your own body hatred, and to stop commenting (particularly unsolicited) on other people’s bodies even when you think you’re saying something positive.

It may not change everything for you or for me, but perhaps it can be some part of cultural change on a broader scale; of teaching each other by example how to be more connected and loving to ourselves and each other.  Perhaps it can play some small role in supporting children from our next generations to avoid the paths that self-loathing can lead us down.  Perhaps teaching a little self-acceptance now can help avoid at least a few Prozac prescriptions later.

Our words really do have power.  How we talk about ourselves and each other means something.

I don’t want my daughter to experience this kind of pain.

For me, it still hurts.

The post Body Politics appeared first on Mad In America.

My name is Michael Rock.  Until now I have been participating on MadinAmerica.com as a commenter named “Marcellas”.  It is very nice to finally introduce myself to this community under my real name.  Although I only occasionally commented, I have been a regular visitor and reader of MadInAmerica.  I am especially grateful to Corinna West, Dr. Mark Foster, and Laura Delano. It was good to know I wasn’t alone.

I feel like I need to apologize for hiding behind Marcellas. Anonymity is not something I am proud of, nor was it a trivial matter to me.  When I marched with Mindfreedom in Philadelphia last May, I was reluctant to introduce myself to some of you who were harmed by an industry I continue to work for.  I am a group psychotherapist in a large hospital network in Eastern Pennsylvania. I have been working with people in groups for twenty five years.  I love my job, and believe I am helpful. I felt that “Marcellas” allowed me to continue to work quietly for change within the system.

When I read Anatomy of an Epidemic, it seemed obvious (from my admittedly limited vantage point) that the national trends in treatment outcomes closely reflect our local outcomes.  By this time I was already on record as a critic of medications and the chemical imbalance theory, and a skeptic of diagnosis.

I wrote To Mr. Whitaker in 2010 after reading Anatomy of an Epidemic to tell him that I was introducing his book to our team library and intended to discuss it. He was kind enough to write back and wish me luck.

I spent the next three years being more stubborn then loud, and I like to think I made some progress.  I developed a model of behavior chain analysis using CBT, DBT, and Positive Psychology.  I call it “Habits”. It can be presented in a very brief series of sessions (our average length of stay of 7 days).   A central theme of the technique is to assume that anyone can learn to control their thoughts, feelings, and actions. Everyone can learn to explore what they are capable of, rather then limited to.

The model is very popular with our patients.  I use a lot of humor and try to make it entertaining as well as helpful. I consistently receive the highest number of compliments from patients at discharge than any other team member, and I am very proud of this. More importantly, I’ve yet to find evidence that the model doesn’t work.

However, my message indirectly challenges the assumption that “accepting illness” along with “medication compliance” is the best path to recovery. This has made me unpopular with those invested in preserving the status quo.  Obviously there are financial incentives involved.

In January I received my “final written warning” from the hospital, and have been working under threat of immediate termination since then. I’ve been to several meetings in which it was stressed to me how serious they are about firing me, and I believe them.

I am not sure what effect leaving Marcellas will have on my career.  I don’t think there is anything I can do to prevent being fired at this point. Not only am I am small fish in a big pond (I only hold a BS degree in Psychology and work for the largest employer in the area), but I also live in a “right to work state” which translates from Orwellian into “the right to fire anyone at any moment for any reason, or no reason at all”.

Since January I have driven to work every day wondering if the ride home would include boxes of photos from my office.  Sympathetic coworkers tell me that when they fire me I’ll be escorted by security in a public walk of shame. It’s assumed they will want to make an example out of me. So I have this to look forward to.

I want the reader to understand that the people who are firing me are not bad people.  They are trapped in the same system as everyone else. I believe they respect me and like me personally, and it’s very clear to me that firing me is painful for them.  I believe also that the practices at my hospital are not unusual in the current paradigm of care.  From all I can see, my hospital is state of the art in contemporary industrial psychiatry.

I am not bitter about being fired.  I am aware that speaking publicly in this way could blacklist me, and I may never work in mainstream mental health again. I have always been very proud of my work and my reputation, and it is difficult for me to throw these away.  Naturally I am nervous about losing my income (although not as nervous as my girlfriend, who is convinced she will soon be supporting me).

I intend to use the extra time I’ll soon have to write about the narratives of disability, the people I met in the system, and to suggest an alternative to it.

I know there are more out there like myself, working under the same pressures, trying to help people. I expect you are also haunted by the people who come to us for help; trust us, do everything we suggest, and get worse.  Please know that you are not alone.

I know now that I am not alone.  I am Michael Rock.

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Psychiatrists Don’t Use the DSM

One of the fiercest criticisms of DSM-5 is that it will expand the borders of mental disorder and thus psychiatrists will wrongly diagnose and treat people as mentally ill. Allen Frances, former chair of the DSM-IV task force, most ardently voices this criticism. He comes across as a silly old man nursing a narcissistic injury (he was excluded from DSM-5), throwing his toys out of his pram. He makes the assumption that psychiatrists use the DSM to make diagnoses. It is an open secret most psychiatrists in fact do not! If most psychiatrists used the DSM constructs we would not see an epidemic of bipolar diagnoses in children as young as two. In fact, most of the patients who come to me with the label of bipolar disorder, do not meet the criteria for the DSM-IV bipolar disorder construct. Schizoaffective disorder, which is supposedly a rare diagnosis, is possibly the most common diagnosis I see in the charts of inpatients which is deeply suspicious. More systematic studies show diagnoses patients garner have little to do with the DSM. For example, one study in the Veteran’s Administration system suggest 25% of schizophrenia diagnoses did not meet DSM criteria, and psychiatrists often made up diagnoses so Veterans could get benefits. In the private systems, fraudulent diagnoses are given as diagnosis determines remuneration.

Most psychiatric diagnoses are not made by psychiatrists but in primary care. Most primary care physicians do not know the diagnostic criteria for most of the common mental disorders as described in the DSM, but that does not stop these labels being used. Even for some common mental disorders most psychiatrists do not know the diagnostic criteria off by heart, and even if they do, take no heed. Take posttraumatic stress disorder as an example. This is a common mental health diagnosis. The diagnostic criteria for the construct are many and complex. I would hedge that over 90% of psychiatrists do not know the diagnostic criteria verbatim. Even if they did, one criterion is than an individual responded to a traumatic event with “fear, helplessness, or horror.” I do not know of any psychiatrists who ask their patients whether they responded in one of these three legitimated ways of responded to severe adversity, and if they did, their patients would probably be puzzled. Having no immediate reaction, or feeling anger or shame instead of “fear, helplessness or horror” to rape will not preclude a psychiatrist making a PTSD diagnosis, but if you stayed faithful to the DSM-IV, PTSD cannot be diagnosed. For depression, the bereavement exclusion is going and there has been concern people will now be diagnosed with depression following bereavement. It is already happening and has been happening for years.

That is not to say that diagnostic assessments are never useful, but this goes beyond the DSM. Diagnosis is important when it comes to identifying whether the morbid mental state is secondary to a medical condition. For example, I have treated patients who present with ‘depressive psychosis’ but this is due to myxedema coma, or those who are behaving bizarrely but have a metabolic encephalopathy. It is also important to identify whether the individual has fried their brains with drugs such as methamphetamine, ‘bathsalts’, or ‘spice’ which can lead to florid perceptual distortions and erratic behavior.

DSM diagnoses no longer guide treatment

Perhaps diagnosis informed treatment once upon a time, but this does not seem to be the case today. This is at least partly true. Individuals have experiences of mental life that cause distress and lead them to behave in ways others feel are bizarre or un-understandable. As a result they may see a psychiatrist. The psychiatrist can engage in the semiotic act of making a diagnosis. In order to do that, he engages in a precursor semiotic act, which involves recoding individual experience and observable mental phenomena or behaviors into ‘symptoms’ and ‘signs’ respectively. If he stops there, he can, and often does ‘treat’ the patient. If those ‘symptoms’ and ‘signs’ are regarded as psychosis, he will end up on a neuroleptic. If the patient is seen as ‘depressed’, he may end up on a serotonin reuptake inhibitor. If he appears ‘anxious’, perhaps a benzodiazepine will be prescribed. If ‘mood swings’ are observed, lithium or an anticonvulsant will be the order of the day. Many patients have experiences that are recoded into a bewildering combination of depression, elation, irritability, psychosis, anxiety, and may end up on an ‘antidepressant’, anticonvulsant, neuroleptic, and benzodiazepine, and if there is no response, this experience will be interpreted as ‘treatment-resistance’ and another medication will be added! I would like to say that this is a caricature of American Psychiatry, but this appears to be the rule rather than the exception. This is not how I practice, and am fortunate to have thoughtful trainers, but outside the academic ivory tower and in the community rampant polypharmacy is the rule. This happens in spite of diagnostic constructs in the DSM, not because of them. Sometimes response to cocktails is even used to support a diagnosis in a backward logic. In this way the DSM is largely irrelevant to the practice of psychiatry. Systems of psychiatric classification are relevant in the consultation room more from their influences on cultural consciousness and experience of the self, than from use in guiding diagnosis and treatment.

Redefining Personhood

Throughout history there have always been individuals who have been regarded as mad, or as Philippe Pinel called it, suffering from ‘mental alienation.’ For Pinel, to be mad meant one’s “character, as an individual of the species is always perverted; sometimes annihilated”. Without reason, man is no different “from the beasts that perish”. It is not madness that causes one to relinquish personhood, but to be identified as such. Psychiatrists, as the moral arbiters of mental life are thus also the high priests of personhood. Psychiatric diagnoses today extend far beyond ‘mental alienation’ and include a wide array of behaviors and experiences regarded as deviant. The removal of homosexuality from the psychiatric cannon is the best example of how personhood was restored to individuals previously regarded as pathological and deranged. For DSM-5, ‘gender identity disorder’ is being replaced with ‘gender dysphoria’. This is similar to homosexuality being replaced with ego-dystonic homosexuality before being expunged altogether. So whilst transgender individuals will no longer be regarded as mentally ill, it is a mental illness if you feel shit about it. A step to reclaiming personhood perhaps, but the transperson’s response to an intolerant society is still seen as pathological.

Far away from the locked psychiatric unit and the consultation room, the DSM exists in classrooms, libraries, the internet, the popular imagination. Each diagnosis at once hijacks personhood and redefines it. With the disappearance of Asperger’s syndrome, a cohort of socially awkward computer geeks have been disenfranchised and forced to rejoin ‘neurotypicals’ or be redefined autistic. The DSM provides the script of how we should respond to trauma; the narrative of resilience replaced with vulnerability. It is a veritable ‘how-to’ for those wanting to be anorexic or bulimic and join ‘pro-ana’ communities. It conveniently rewrites the ways we can be seen as ill, seek professional help, gain compensation, or even moral exculpation for our behavior. From Portland to Port Moresby, the DSM unites us with a global template for being mentally ill. In doing so, the DSM not only seeks to describe the landscape of psychopathology, it actively shapes it. Whilst removing the bereavement exclusion for diagnosing major depression may not change the psychiatrist’s attitude, it does refashion the cultural expectations of what constitutes acceptable misery. What is pernicious about the DSM is not how it shapes psychiatric practice directly – it doesn’t. Instead, it at once erodes personhood from those seen as ‘mad’, and for everyone else creates a cultural expectation that we are all sick and in need of treatment.

The post Does DSM-5 Matter? Yes; but not for Psychiatrists appeared first on Mad In America.

As the medical director of a community mental health center, my colleagues look to me for guidance on how to approach this new edition. How many should we buy? How much time should be devoted to staff training?  Although this is a book published by psychiatrists, it has become widely used as the basis for diagnosis by many clinicians.

I have written previously about what psychiatric diagnosis does and does not tell us.  I am well aware of the many limitations of labeling something about which we have such limited understanding.  As widely publicized, Thomas Insel, the Director of the National Institute of Mental Health published an essay on the eve of the publication of DSM-5 which essentially laid out the profound limitation of this guide.

People on this particular website may deride any service offered in a community mental health center like the one which employs me, but everyday people come to us seeking help. We are embedded in the social service network and the insurance system. This is all reliant on some sort of process to allow us the get paid for our services. That process is based on diagnosis.  The scope of the need goes far beyond seeing a psychiatrist.  If someone is homeless and needs a voucher for a hotel, if someone needs a coach to help find a job, if someone wants help to stop abusing alcohol, if that person and his therapist agree to check urine samples to follow his progress, all of this requires someone – often me – to provide a diagnosis.

When I think about replacing this model, I have wondered whether it might be helpful to allow each citizen to draw from a fund at any point in her life without regard to a faulty diagnostic system.  If a young person hits a rough patch where she seems unable to focus and has trouble staying at work, she could draw on this for a period of time until she rights herself without out having someone apply a label based on a system that so many people agree is flawed and lacking in validity.  Another person might rely on this when a loved one was ill and needed care.  This might raise the bar for requiring us to label a person as disabled or anything other than someone who for whatever reason needs a time out.

That is a thought. Probably not a realistic one. So what do I do in my own world now?  My answer to my colleagues is to wait.  I do not believe the DSM-5 is anything other than a code book.  I think we will be able to find out for free how the codes have been adjusted and changed. We can look at the ICD system which is available on line. We have limited resources and it does not appear to me that they are well used in buying this book or retraining our staff.

Most importantly, we need to train our staff and talk to the people we serve about what these labels do not tell us. They do not answer what is wrong or what happened in a person’s life. These labels do not tell us who can recover. Even for those who believe that the drugs we prescribe may be helpful, the labels do not tell us much about what specific drug will be effective. So-called antidepressants, for instance, are used so broadly that the label makes little sense.  Even for those who believe that we will understand extreme states by deconstructing the fundamental workings of the brain, these labels do not inform us about  brain function or dysfunction.

On a positive note, perhaps the publication of the DSM-5 has prompted a much-needed discussion of the profound limitations of psychiatric diagnosis.

The post Why I Won’t Buy the DSM-5 appeared first on Mad In America.

“The DCP is of the view that it is timely and appropriate to affirm publicly that the current classification system as outlined in DSM and ICD, in respect of the functional psychiatric diagnoses, has significant conceptual and empirical limitations. Consequently, there is a need for a paradigm shift in relation to the experiences that these diagnoses refer to, towards a conceptual system not based on a ‘disease’ model.”

In brief, the argument is that the so-called ‘functional’ diagnoses – schizophrenia, bipolar disorder, personality disorder, ADHD and so on – are not scientifically valid categories and are often damaging in practice. The statement argues that we already have alternatives, such as psychological formulation, and that there is a need to work in partnership with service users and professional groups, including psychiatrists, in order to develop these further.

The story made the front page of one of the UK’s best-known broadsheets, the Observer, sister paper to the Guardian, and there was a double-page spread inside (“Medicine’s big new battleground: does mental illness really exist?“, and “Psychiatrists under fire in mental health battle“). Within hours, over 500 comments (and counting) had been posted online, and the articles were being re-tweeted round the world. The articles quoted me, Professor Mary Boyle (author of ‘Schizophrenia: a Scientific Delusion?’) Eleanor Longden, researcher, campaigner and survivor, and Oliver James, psychologist and journalist, in support of the call for a non-medical approach to mental distress.

Needless to say, there has been as much backlash as appreciation. Perhaps most predictably, Allen Frances, outspoken opponent of DSM-5, described the document (without having read it) as ‘extremist posturing by British Psychological Society, just as silly as DSM-5 and NIMH – why not a balanced biopsychosocial model’ (@AllenFrancesMD 12.5.13.) Many took advantage of a somewhat unhelpful online headline to dismiss the debate as inter-professional ‘turf wars’, while others accused the DCP of ignoring the role of biology.

The actual statement makes it absolutely clear that these are misrepresentations. The DCP specifically states that ‘This position should not be read as a denial of the role of biology in mediating and enabling all forms of human experience, behaviour and distress.’ The statement also explicitly says that the argument is about ways of thinking, not about particular professions. The ‘turf wars’ accusation is particularly wide of the mark given that the DCP statement is simply a more measured reiteration of recent comments by some of the world’s most eminent psychiatrists: Allen Frances himself described DSM-5 as ‘deeply flawed and scientifically unsound’, while Dr Thomas Insel, NIMH director, said ‘Patients…deserve better’. Former NIMH director Dr Steven Hyman, was even blunter: he called DSM-5 ‘totally wrong, an absolute scientific nightmare’ and in response, the Chair of the DSM-5 committee, Dr David Kupfer, admitted “We’ve been telling patients for several decades that we are waiting for biomarkers. We’re still waiting.”

The main difference – and of course it is a crucial one – between the position of these eminent psychiatrists and the DCP is that the former are determined to pursue the biomedical model at all costs. Indeed, NIMH has (as discussed on this site) announced the intention of launching a 10-year programme to pin down, once and for all, the elusive biomarkers that have evaded researchers so far. The project starts from the remarkably unscientific position of assuming what needs to be proved: in their words that ‘mental disorders are biological disorders.’ Flawed as this enterprise is, it will allow traditionalists to continue to claim that ‘We’re getting there – honestly!’ In the meantime, the overwhelming amount of evidence for psychosocial causal factors is once again relegated to a back seat.

I was a member of the DCP working party which took 2 years to arrive, painstakingly and carefully, to this consensus statement. I believe there is nothing more important that a professional body can do than speak the truth about the evidence – and that is what this statement does. Nevertheless, given the nature of the issues, it is a brave move. I hope that other organisations will take heart – as they did from the original BPS response to the DSM-5 consultations in June 2011 – and join the DCP in calling for a more humane and evidence-based approach to mental distress.

Links to BPS consultation responses on DSM-5

Society Statement on DSM-5 (12/12/2011)

The British Psychological Society Still has Concerns Over DSM-5 (6/20/2012)

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As a refresher for those not up on their Szasz, his basic argument is that “mental illness” is a nonsensical term (Szasz, 1974). Minds differ from brains. Unlike brains, minds aren’t physical and therefore cannot become biologically sick. To think otherwise is to reify a metaphor. The things that DSM-5 says are mental disorders are not diseases the same way heart disease, cancer, and diabetes are because none of them can be explained in terms of specific physiological malfunctions. Yes, some disorders in DSM-5 are likely putative diseases; that is, we suspect that they have physiological bases, even if we haven’t actually discovered them yet.

However, most of the disorders in DSM-5 probably aren’t even putative diseases. They are simply vexing life problems that warrant attention and remediation—things such as coping with divorce, experiencing social isolation, struggling with family conflict, dealing with the stress of economic pressures, and plain old general unhappiness in the face of challenging circumstances. These problems deserve attention to be sure, but those experiencing them aren’t ill in any literal sense. They are simply struggling with the trials and tribulations of everyday life. Life, after all, is often quite hard.

Despite its straightforwardness, Szasz’s contention that mental disorders are not genuine illnesses initially strikes many people as wrongheaded. This is not surprising given how often we have been told that mental illnesses are serious medical conditions afflicting a significant portion of the population—1 in 4 of us, according to the National Institute for Mental Health (NIMH, 2013). Dismissing mental disorders as hokum is often viewed as an affront to all those suffering from them because seeing people as sick allows us to stop blaming them for their problems and start treating them more humanely. This begs the question of why we wouldn’t empathize with or provide assistance to people upset over difficult life circumstances, even if we didn’t think they were ill. However, that’s a question for another day.

Recent events suggest that Szasz’s arguments remain timely. On April 29, the National Institute for Mental Health broke with the DSM, asserting that it will be “re-orienting its research away from DSM categories.” At first glance, the rationale offered sounds like something straight out of Szasz:

The weakness [of DSM] is its lack of validity Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever.

In other words, the NIMH acknowledges that mental disorders, as currently defined in DSM, are little more than descriptive conveniences. None of them are diagnosed based on biology. Szasz would have agreed. However, from a Szaszian perspective this leaves things wide open. It means that DSM categories are either (a) putative illnesses whose status as brain diseases (not metaphorical “mental disorders”) might one day be revealed, or (b) problems in living that are currently being misrepresented in medical terms.

The NIMH’s perspective is a bit narrower than Szasz’s. To them, all mental disorders fall into the putative brain diseases category. While they agree with Szasz that mental disorders cannot at present be diagnosed biologically, they remain fully committed to the idea that “mental disorders are biological disorders involving brain circuits that implicate specific domains of cognition, emotion, or behavior.” In their view, it is the DSM that is holding science back from proving that mental disorders are brain diseases. If we just chuck the DSM and redouble our efforts, the elusive biomarkers we seek will be found.

The irony is that both the DSM and the NIMH unintentionally reinforce Szasz’s basic argument when they acknowledge that mental disorders cannot be diagnosed biologically. Where they miss the boat is that they continue to hold out hope that all the problems we currently classify as mental disorders will ultimately be revealed as brain diseases. Some of them perhaps might, but it is likely others never will be. As Szasz knew, many of the problems that psychiatrists, psychologists, counselors, and social workers find themselves dealing with are not physical illnesses. They are problems in living.

Medicine, for all its virtues, will never be able to “treat” (in a literal, medical sense of the term) people who are struggling over whether to quit their jobs, end a relationship, or give up grieving a loved one because to treat such things would mean there would have to be a biological malfunction, rather than a set of life circumstances, triggering these difficulties. Being upset about something does not always—or even usually—mean that one is sick. The negative feelings that life problems evoke are not always diseases. They are usually part and parcel of being human. Most psychotherapists tend to agree with this viewpoint and see the vast majority of their clients as struggling with the emotional consequences of challenging life situations. Only once the DSM and the NIMH acknowledge Szasz’s argument in full is there likely be any progress in differentiating putative brain diseases from problems in everyday living.

References

Insel, T. (2013, April 29). Transforming diagnosis.

National Institute of Mental Health. (2013). The numbers count: Mental disorders in America.

Szasz, T. S. (1974). The myth of mental illness: Foundations of a theory of personal conduct (rev. ed.). New York, NY: Harper & Row.

The post The Myth of Mental Illness Revisited, NIMH Style appeared first on Mad In America.

The answer always was, “Because I have Bipolar disorder.”  “Treatment-resistant Bipolar disorder”, to be exact, and that was the reason why I continued to get worse, more hopeless and suicidal, more dysfunctional and dependent on my family and my “treatment”, less and less connected to the world.  I knew this to be true, because it’s what Psychiatry told me, and as a good patient, I believed what I was told, even as the drug dosages and pill bottles and DSM diagnoses increased.  For all the chaos and muddled pain and confusion in my world, I knew with perfect clarity that I was “Bipolar.”  It was the only thing I truly knew.  That diagnosis was my anchor in the stormy sea of my life, though it took me nearly thirteen years to realize that internalizing a “Bipolar” identity did nothing to clear up my skies.  These days, the further I get from my psychiatric indoctrination, the more I realize how limiting and damaging, how much of a self-fulfilling prophecy, being “Bipolar” truly was.

During my most formative teen-aged and twenty-something years, I looked to the DSM, and to the psychiatrists who “cared” for me, as my beacons in the darkness.  They promised me answers, they promised me resolution to my pain, they promised to help me understand myself.  They promised to take care of me, to give me medicine that would help me not want to die or hide away from the world anymore, to help me learn how to manage my “illness” and function in the world in a way I could “handle”, given the severity of my condition.  These were powerful promises, promises I desperately wanted to believe, and did believe, for a long time, even as I got progressively worse.

I’ve been reflecting a lot on that time in my life with all the recent news surrounding the National Institute of Mental Health (NIMH), the American Psychiatric Association (APA), the DSM-5, the medical model of “mental illness”, and the very legitimacy of Psychiatry itself.  The NIMH has announced it will no longer support the DSM-5 because it “lacks validity.”  They and the APA have also acknowledged that despite years of neuroscientific research searching for the biological causes of “mental illness”, they have nothing to report.  Zippo.  Nada.  [Side bar: While the content of these announcements is a big deal— essentially, the governmental and professional representatives of the entire psychiatric Industry have conceded that there is no current evidence supporting the claim that “mental illness” is a valid, medical entity at all— I believe the reasons for the announcements are very ominous and worrisome, as the NIMH is leading the United States down an even more reductionist, dehumanizing path of neuro-based Psychiatry.  This is a topic for another time, however.]

Had this news about the DSM and the entire medical model come out just over three years ago, when I was deep under the spell of Psychiatry, I have no doubt that I would have been faced with a profound identity crisis (one that I have, in fact, worked through these last two and a half years in a much slower way).  What would all of this have meant for me at a time when my day-to-day life consisted of driving to my Intensive Outpatient Treatment program for “Borderline personality disorder”, sitting in intensive psychotherapy for “Bipolar disorder” and “Substance Abuse disorder” two to three times a week, and taking five psychiatric drugs every morning and every night?  What would those thirteen years of “treatment” have been for?  Those countless hundreds of bottles of pills?  The hospitalizations?  How would I have explained all those years of intense emotional ups and downs, scary and painful acts of self-destruction, thoughts of suicide, inability to stay in relationships, and complete disconnect with the human race, if they weren’t in fact “symptoms” of “Bipolar disorder”?  What would my life have meant?  What could it have meant, if I was never “mentally ill” to begin with?

I wonder how many people this past week have asked themselves these same questions, faced with the incredibly painful and confusing realization that what they’ve been told by Psychiatry is, in fact, not true.  I’ve had some time to work through all of this and make sense of my Self and my life in a new way; it has been the scariest and most difficult time of my life, but also the most incredibly transformative and beautiful.  I wish I could hug each and every human being out there who’s believed the “mental illness” story told so persuasively by Psychiatry, and trusted in it, just like I did.  By the time I was twenty-seven, Psychiatry— my psychiatric labels, my psychiatric “meds”, and my therapy— defined my entire world, and shaped the lens through which I saw and made meaning of everything I was experiencing.  I was lucky enough to have a family who never gave up on me, no matter how dark things got, but I believed that because they weren’t doctors, they didn’t know how to truly help me… only Psychiatry did.  I look back to that old ‘me’ and feel deep love for her, for she was kept so in the dark by an Institution that promised to never cause her harm.  If only she saw that it was the “care” she sought from Psychiatry, as well as the internalized “Bipolar” identity, that caused most of her suffering, and the majority of her “symptoms” throughout that time.

Today, in my human family, there are millions of people who wake up every morning to their bottles of pills and their calendars of doctors appointments and their mood charts and their DBT distress tolerance skills and their monthly phone calls to the pharmacy with the elevator music on repeat while they wait on hold.  At least, I can imagine that might be what people’s days look like, for those were my days, and that was me, for many, many years.  That is still me, today, only now it’s a part of my past, a part of the foundation of who I’ve become.  I can never forget my relationship to Psychiatry, nor do I want to, because if I do, I’ll forget what it was like to believe deeply enough in an institution that promised to help me that I was willing to sacrifice my humanity for it.  I see myself in the faces of those who believe in Psychiatry today, whether as patients or as “mental health” providers, and I feel so much love and empathy for them, for the fear and insecurity they might be feeling, for the panic at what life would look like without “mental illness.”

Every day, I awaken to a society under the influence of Psychiatry.  I see evidence of this intoxication in newspapers, on television, on the radio, in conversations overheard on subways and coffee shops, in voicemails and emails from friends, on Facebook status updates, on flyers seeking research subjects, on ad campaigns plastered above the highway, in Homeland and Silver Linings Playbook and Demi Lovato and Catherine Zeta-Jones.

Every day, words are written, read, or purchased in the name of Psychiatry, in books, journals, textbooks, essays, articles, and Industry-funded studies.  Every day, Psychiatric knowledge is created and disseminated on the mass scale, solely to expand the breadth and depth of its social control disguised as medicine.

Every day, hundreds of thousands of people are educated by the knowledge institutions of Psychiatry, surrendering their minds to it, whether as high school students, college undergraduates, graduate students, medical students, residents in training, fellows, teachers, instructors, or professors.

Every day, hundreds of thousands of people go to work for Psychiatry, whether as mental health workers, counselors, social workers, psychologists, or psychiatrists.  Primary care doctors, too.

Every day, families say, “I am the proud family member of a person with mental illness,” and every day, families and self-declared “mentally ill” people fight against the so-called “stigma of mental illness.” [For more on this, see Sera Davidow's great post.]  International non-profit organizations thrive on these campaigns, raising millions of dollars for Psychiatry and the Pharmaceutical Industry.

Every day, thousands and thousands of institutional spaces pump energy into and create profit for Psychiatry, from clinics to day treatment programs to group homes to outpatient programs to inpatient units to detox facilities to buildings in general hospitals to private and public psychiatric hospitals to prisons, and to schools.

Every day, millions and millions of people surrender their bodies, their minds, and their human spirit to Psychiatry as patients, consumers, and clients, whether “voluntarily” or “involuntarily”, whether through overt or covert force, whether they realize it or not.

Today, Psychiatry, bolstered by the psychiatrically dependent industry of “mental health”, is society’s master storyteller about the human experience.  It has effectively constructed medicalized language out of thin air, taught this language to the Western (and, more and more, the non-Western) world, and reinforced its pseudoscientific tenets so subtly, yet with such insidious force, that those who hear these stories receive them with no hesitation, no question, no push back.  Psychiatry thrives on passive acceptance, because people desperately want the story that suffering is a medical “condition”, treatable with a pill and a doctor, to be true.  I know I once did, so very much.

Psychiatry has, with brilliant success, taught our human family to forget its humanness.

Few question Psychiatry’s story that certain emotions, thoughts, and behaviors are “symptoms” of “mental illness.”  That our genetic makeup determines whether or not we have these “mental illnesses.”  That there are life-saving “medicines” out there that will act “against depression”, “against psychosis”, and “against anxiety”, and that will pharmaceutically ease people back to emotional and psychological “wellness”.  That people who hear voices, or go days without sleep and become God, or think about life and death on a daily basis, or have anxiety so intense they want to rip their skin off, are faced with life-long “conditions” that must be accepted and managed with Psychiatric “help”.  That despite decades of failed neuroscientific research, it somehow remains an unquestionable fact that these experiences are in fact brain “diseases” caused by biomarkers that will, some day in the future, be found.

That the human experience, the human mind, and the human soul, can somehow be reduced to neurotransmitters and “brain circuitry.”

Since the dawn of humanity, there has been suffering in the world, and modern Psychiatry has effectively disconnected us from its environmental causes.  On the grand scale, Psychiatry has worked hard to ensure we forget that suffering, so-called “psychosis” and “mania”, and other “abnormal” experiences are healthy responses to racism, sexism, homophobia, poverty, religious persecution, war, exploitation, violence, and trauma.  That it is completely healthy to feel disoriented, profoundly sad, anxious, and afraid when faced with the loss of a job, the death of a loved one, the pressure to pay bills and put food on the table, the societal pressure to look a certain way physically, or to be financially successful.  That emotional and psychic pain are a healthy response to being a child or adolescent in the world, as well as to puberty, bullying, pressure, school stress, witnessing divorce, physical, verbal, or sexual abuse, social isolation, or just being “different” from the entirely socially constructed concept of “normal” (whatever the heck that means, anyways).  What does any of this have to do with “chemical imbalances”, biomarkers, and “brain circuitry”?  Why do we think that the true explanation of these experiences must lie in the hands of medicine?  What expertise does Psychiatry have on each of our unique human lives?  Why have we come to believe that human suffering is somehow only seen as valid when it’s been translated into medical, psychiatrized language?

Upon learning about the NIMH and APA announcements, someone asked me yesterday, “Well, if this is true, what should those people out there suffering do?  Where should they go?”  A very valid question, one to which I believe there’s no easy answer.  What I can say for myself is that I started to find these answers when I discarded the idea that I was broken, “ill”, “diseased”, or faced with a life-long “condition.”  The answers came to me when I remembered that I was a human being, and that life on life’s terms is meant to be hard, painful, confusing, and scary, and that there’s nothing “abnormal” about experiencing emotional and psychic pain, however agonizing it may be.  They answers came to me with the recognition that suffering is not something to be dismissed, denied, numbed, drugged, or “treated”.  That suffering carries a deeper message I should take the time to explore and understand with people who treat me with dignity and respect.  That pain can be a catalyst for growth.  That there is inherent importance to the experiences we as a society have deemed “unacceptable” and thus “abnormal”, like sadness, anxiety, panic, fear, or so-called “mania” and “psychosis”, and that these experiences never just happen out of thin air, even when there may be no apparent causes for them.  Just being alive in today’s industry-driven, patriarchal, selfish, and violent society is enough of a reason, in my opinion, to experience any of what Psychiatry would cause “mental illness.”

Thomas Insel, the leader of NIMH, recently said, “Patients with mental disorders deserve better.”  What I will say to this is that human beings who’ve been psychiatrically labeled deserve better.  They deserve the right to be human, just as they are, without being called abnormal.  They deserve to be supported (and only if they desire to be supported) by people who will not claim expertise on their experience of the world, and by people who will not pathologize them or see them as brains with flawed biomarkers or lists of symptoms.  They deserve to be given the opportunity to find their own inner wisdom, instead of sacrificing their agency to doctors who know nothing of their life stories.  I know I deserved that when I was fourteen, instead of being told by a psychiatrist that the intense anger I felt towards myself, my family, my school, and my town was a sign of “mania” and that I was “Bipolar.”  The suffering that we as human beings experience is worthy of dignity, exploration, understanding, and human support; to call it “symptomatic” of a phantom “illness” is to do just the opposite.

I have dreams for a future in which our collective humanity will fully embrace being human for all its pain, beauty, individuality, and opportunity for transformation.  A future in which we don’t need categories, classifications, and medicalized language to describe the often indescribable experience of being alive on this planet.  A future of acceptance, unconditional support, and human rights for each and every one of us, no matter how we feel, think, or experience reality.  I know I’m not alone when I dream this dream.

The post “Mental Illness”, the DSM-5, and Dreams for a Post-Psychiatry World appeared first on Mad In America.

I first noticed an odd traffic pattern in our Google Analytics account, indicating that the front page was receiving more than ten views for each unique visitor. This means that some minority of accounts was reloading our front page over and over again. This is called a botnet attack, where a hacker uses a set of zombie computers, often compromised by malware, to perform repetitive tasks.

When this came to my attention I began setting up extra security software on the site. Alas, my first attempt ended somewhat disastrously in a totally crashed Mad In America that took almost an hour to recover.

Shortly thereafter, we began experiencing a major spike in traffic due to the viral sharing of Bruce Levine‘s Why Anti-Authoritarian’s are Diagnosed as Mentally Ill article. This was last Friday, May 3rd. Curiously, our referral traffic indicates that the hacker community was a major source of this legitimate wave of new readership!

As many of you noticed, the site became virtually unusable for logged in users. Our traffic spiked considerably on Wednesday. Over the past week we’ve served more unique readers than we usually do in a month — and we are still experiencing exceptionally high traffic on Bruce’s article, which now has a very broad base of fans including almost a thousand readers from Portugal!

With the site crippled, my first priority was to keep it operational and to appease our VPS web host, who was threatening to shut us down because the load was impacting other users on our physical server. This crisis prompted me to apply a number of important optimizations to our database and web server software. I also had to turn off several plugin features of the site in order or minimize the amount of code that was being run with each view.

I am very grateful to the Cloudflare service for its “I’m under attack” security setting, which allowed us to block almost all the illegitimate traffic instantly, and return the site to a functional state where the flood of new readers and returning users could all make use of Mad in America. While this setting was active, you noticed a five-second wait time before being able to access the site, during which Cloudflare expertly determined your humanness. Sometimes you may have had to answer a CAPTCHA challenge as well.

While effective, this inconvenience of the 5-second interstitial page is not a sustainable solution. I’ve never administered a site this size before, so I was feeling eager, and also out of my depth. I spent many long hours sifting through server logs and process lists, familiarizing myself with our various firewalls, trying to identify where this bad traffic was coming from and how to most effectively stop it, to little avail.

Last night I was finally able to setup security software compatible with our site, called Wordfence, and I was astonished. It’s one thing to understand an attack like this in theory, and another thing to watch it playing out before my eyes.

I knew by this point that turning off Cloudflare’s extra security would result in our server being flooded to the point of near-failure within minutes. But with Wordfence I am able to set rules that throttle the most problematic traffic while I used a beautiful real-time access log to manually identify and block the zombie bots once and for all.

This took a long time. It seemed like each time I blocked one, another one popped up in its place, like a game of whack-a-mole. At a certain point I was beginning to lose heart. Maybe this attacker had an army of thousands of zombies, and would just throw more at us for each one I blocked. Perhaps I would have to rely on strict automated rules that would still cause some strain on the server and inconvenience readers. Just then, after around two hundred blocked IPs, they stopped coming. I defeated the zombies.

Why are we Under Attack?

There is no easy way to determine the source of a botnet attack. One might suspect that this attack was personal in nature — a professional undertaking by somebody who feels threatened by our community.

On the other hand, these sorts of hacking attempts against WordPress sites are extraordinarily common. The larger we grow, the more likely we are to experience them. Hackers go after WordPress sites because, while quite secure, they have certain predictable vulnerabilities if not setup properly. These hackers hope to leave their mark, steal useful data, or simply gain experience in the field.

False Positives

In my zealous crusade last night, some legitimate readers were swept up the banning of IP addresses.

The reason for this is that the criteria I chose to ban was based on some odd behavior I thought to be exclusive to the zombies, but wasn’t. They would always try to load certain plugin files that have long since been deleted from the site. In fact, this is why Google kept showing them hitting our front page. Our site had a legacy script from our launch last year that was set to redirect all 404 – Page Not Found errors to our front page. This was meant to help people who had bookmarked or were following links directed to the old madinamerica.com blog, which has a different file structure than the current site.

So the bots’ attempt to load old files and poke around for vulnerabilities resulted in epic traffic redirected to our front page. Ironically, our front page is the most resource intensive page on our site to load, so in a way we were complicit in our own attack!

As it turns out, some of your browsers are also loading these old, non-existant files. I’m honestly not sure why yet. It may have something to do with your local cache. Last night when I noticed anybody loading the files I deleted months ago from the site, I just went ahead and banned them. I even banned the IP address Robert Whitaker was accessing the site from!

So, please, do not be too alarmed if your IP address was banned. Just shoot me a message at: mcohen@madinamerica.com and I will remove the block right away.

Thanks for your patience, and for your ongoing support. Happy reading!

The post Responding to Attacks on MIA — One Long Night of Zombie Whack-a-Mole appeared first on Mad In America.

19 years old, 1984

This photo was taken about 6 months before my fall into psychiatry. I was 19 years old. I was an athlete. I swam, cycled, and ran most days and was training for a triathlon. That was a dream that never came to fruition. The psych meds can not only put weight on regardless of how you otherwise care for yourself, they also tend to make people feel gravely lethargic and vaguely sick all the time. I could not exercise as I had before. Could not. It doesn’t matter how much mental health professionals try to tell us that if we just exercised we’d be okay in the face of neurotoxic drugs that cause weight gain, because the fact is the drugs impede that capacity. This is not widely appreciated or understood and people on psych meds are again traumatized and made to feel guilty for something that is truly outside of their control as long as they are taking these medications. Exercise should be made a priority in the care of those who would be labeled with any psych diagnosis… everything should be done to avoid destroying people’s vital energy with psych drugs. Exercise is absolutely imperative for good health — mental and physical. When we lose the capacity to exercise we lose the potential for good health. Period.

During

2002

This photo was taken pretty much at the height of my drug cocktail. I had gained about 95 lbs from the healthy weight I was in the first photo. I want to be clear that I do not assume that all heavy people are unhealthy or unfit, but for me this change was indicative of my failing health and wellbeing. I had always been very active and athletic and the loss of that was devastating emotionally and physically both. I found it hard to walk much, let alone do anything more strenuous than that. I still loved going on easy walks in nature, as I do now and always have. I never stopped doing that. I think that’s an indication that at my core I remained strong and untouched.

I was not well during these years. I felt flat and empty and like my life had no meaning. I slept a lot. I slept 12 hours a night in fact. I was heavily drugged and sometimes could not be roused. I also felt drugged and fuzzy headed. I did not express myself creatively as I do now and before I took drugs, too. I worked most of the time, but given I required 12 hours of sleep a night a full-time job was really far more than I could reasonably handle. Still, I did it for many years. I really don’t know how. I was a social worker in mental health social services. I learned a lot about the system. I actually worked for fairly enlightened programs that maintained philosophies of harm-reduction and minimal coercion, but even in such settings a lot of coercion happened. It’s simply endemic at this time, anywhere you go within social services. Sadly, it is how professionals are trained to interact with clients and that’s not even acknowledged or conscious for most people.

After

2013

After approximately two decades on psych meds I came off a six drug cocktail in about six years. This proved to be a gargantuan task. I’ve written about that here. This post is about the time spent healing since the withdrawal was completed over three years ago.

It should be noted that I have indeed lost most of the weight I put on, but the weight loss came as a result not of trying to lose weight, but instead learning to get healthy after the insult of iatrogenic illness. This is an important distinction since weight loss diets, per se, tend to be very unhealthy and most people don’t keep the weight off because of that fact. All the changes I made to my diet were for my overall wellbeing. The weight loss was secondary and happened as a result of learning to be healthy. My diet is deeply nourishing, consisting of whole real foods with dense nutrition. I eat a lot of healthy fats and do not count calories or concern myself with portion size. By paying attention to my body’s needs these things have fallen into place naturally.

The weight is really the most superficial aspect of the global and broad healing that has occurred in my life.  It’s also the only one visible to anyone other than myself and those closest to me and so I share it because it remains a rather astonishing contrast.

I see in retrospect that some core, vital part of me was always there during the drugged years, learning and remembering much that would help me in these years of coming off meds and now being med free. I no longer believe that I “lost” my life to drugs. I do think that it’s tragic that I could not be more conscious during those years and that my body became toxic, polluted and chronically, painfully ill; and this is why I help others learn to avoid what happened to me. Still, all my experience was not lost; in fact it was stored in my body to be processed when I got free of drugs. This is one of the many ways that psych drugs are agents of trauma. Part of the healing process, for me, and clearly many others who’ve been on psych meds and come off, is one of working through layers and layers of trauma — that which was incurred prior to psych drug use as well as that which is incurred as a result of psych drug use and exposure to the dehumanizing psychiatric system. I have done this mostly through meditation and yoga. Trauma becomes embodied. Embodied therapies are very important.

As many readers know, the process of drug withdrawal made me much sicker before I started to then regain well-being. Protracted withdrawal syndromes and associated problems are much more common than most people realize.

I completed my withdrawal in February of 2010. I was one of thousands of people who develop serious protracted withdrawal issues that lead to grave disability. Still, I have not had one moment of regret for having freed myself from these drugs because my mind is clear. I have a clarity of mind that is so beautiful I can cry if I spend time thinking about it. My clarity was stolen from me for almost half my life. I have it back and even while gravely impaired I have been grateful for that.

My healing journey has entailed learning about our deeply holistic natures as human beings. Everything matters.  Our relationships with others and the planet, the food we eat, and the air we breath… how often we move our bodies and the thoughts we nurture in our minds and souls.

That is what understanding ourselves as holistic beings entails. Understanding our relationship to EVERYTHING in our environment and our bodies, what we’re born with and how it’s all connected. It’s not some sort of new age hogwash. It’s just plain and simple reality.

So, by that slow and painstaking, but ultimately joyous process of coming to understand how everything matters, I’ve been healing and bringing back well-being to this body/mind/spirit. At this point I am in many ways  better than I’ve ever been in my life.  I do still remain significantly limited in some practical ways… but at this point I’m sure the limitations are time-limited.

The ways I’ve healed myself are numerous and undeniable. I’ve healed my endometriosis. I no longer have menstrual pain and I had very severe endometriosis since I was about 16 years old. I even had repeated surgeries that were never successful.

I’ve healed severe, chronic and acute irritable bowel syndrome (IBS). That too I had since I was about 16 years old. Many people who take psychiatric drugs have serious gut issues. Some of these gut issues predate psych drug use (mine did) but others are actually caused by the drugs (mine certainly got worse). In any case, healing my gut has helped all my well-being. As indicated above it’s all related. You start healing one thing and you’ll end up healing everything.

I was pre-diabetic as a result of heavy use of neuroleptics. I now have blood-sugar levels that one doctor told me would be the envy of even the healthiest people! Sadly type-two diabetes is an epidemic today. Those of us who take or have taken psych meds are high risk. It’s almost always reversible so it’s well worth learning to heal oneself.

Psoriasis, a horrible skin condition, is virtually gone. It once covered my whole body and now I have only a couple of spots left.

My hair is much thicker and shinier than any other time in my whole life. I had incredibly thin and sparse hair. It’s not luxurious even now, but the difference is amazing, striking, visible and palpable.

I’ve lost 75 lbs. My body continues to changes in multiple (positive) ways daily. Seriously. I can feel and see it change, transform, heal. It’s astonishing and lovely. It continues to communicate its needs and our partnership grows and prospers in love everyday. Our bodies are miracles, truly.

Lastly but perhaps most significantly for this particular article I’ve integrated and embraced my human nature, that first manifested in a way that got labeled “bipolar.” I “undiagnosed” myself a long time ago, but since then I’ve come to more fully understand my experience. For me it was the lovely capacity to access and delve deep into not only my own psyche, but the consciousness of humanity itself. It’s been a deeply rewarding journey to reclaim these parts of me that psychiatry almost always tragically misunderstands in the people it purports to help. It is this reclaiming that allows me to feel well even while I am still physically compromised.

I did all these things in part by having developed deep daily practices of yoga and meditation that essentially entail simply but profoundly listening to my experience. That includes learning to pay attention to my body’s needs. Psych drug withdrawal causes extreme and multiple sensitivities in some people. I discovered I had to change my diet to heal my gut and whole being.  Ultimately the practices of meditation and yoga and listening to the body in general, have allowed me to develop  a deepening understanding of the human condition in general and the nature of our reality on this planet. This has, in turn, allowed me to release anger and blame and simply come to a deep gratitude for being alive and having had every experience that has brought me to this place without regard to whether they’ve been painful or pleasant. I have learned to embrace that which I have been given. Life is messy and painful and it’s glorious, too.

I’m not fully functional still in that I cannot make plans or travel or even leave my house daily at will. It can on occasion be frustrating but not nearly as much as it once was. My spirit is well and my body continues to get better. I now walk almost daily (walking in the woods is generally so restorative that even if I can’t go out in the world otherwise, I can do my nature walk) and I also do yoga daily which continues to be my most important means of physical rehab. Being that I was bedridden for two years it’s been a miracle of rejuvenation for me.

My husband left on a trip a few days ago for ten days. It’s the first time he’s been able to leave me in over 5 years since I’ve needed close to 24 hour care. I can manage on my own for 10 days. This is wonderful.

I am now able to run errands two or three times a week rather than once or twice a month. I can talk on the phone more often and am reconnecting with loved ones I couldn’t talk to for years. I’ve also developed some of the most rewarding relationships of my life as a result of the work I’ve done while sick via the internet. I can also, now, on occasion, be social and spend time with trusted friends in person. My life is rich and full in spite of limitations. I don’t judge the ups and downs so much anymore. This is my life.  It’s a meaningful and lovely life I’m living. I am eternally grateful to be med free.

The post Everything Matters: a Memoir From Before, During and After Psychiatric Drugs appeared first on Mad In America.

This beautiful sunrise I caught on a dawn flight to Chicago.

It was really kind of a battle – lots of wild night fights with demons. I spent quite a while in unexplainable fear, being woken up in the middle of the night in panic. My spiritual advisor people said it was because the evil side knows I might have good impact if I figured out what I was doing. I spent a lot of days calling friends to get them to make the terror go away. I probably would have called you if I had your phone number. Eventually I figured out how to hear the guidance of the Creator and call on the universe’s strength when the evil came.

Someone asked me how you do this; hear what the Creator wants you to do. Now, I come at this from a Christian perspective, but I recognize that this perspective has been a source of trauma for many. I think all paths to the Divine work as long as the teaching traditions are intact. Some traditions have lost much of their protection, like many pagans know how to approach the spirit world but not how to protect themselves from it. It’s a fine line to walk. Just know that if I use Christian terms in the rest of this post, it’s not a lack of respect towards other traditions, just my personal viewpoint based on what was accessible to me. So how you hear what the Creator wants you to do is the million dollar question, and here’s my two cents-worth of an answer, and an explanation of why it took all winter to get there:

I connected with the Creator with prayer, listening, stillness, dreams, talking to believers, Scripture, fasting, going to Christian events like Tres Dias, entrepreneurship events, books, and finally realizing that 32 grant rejections last year for Connect Power might actually have been a sign.

My goal now is to focus on solutions for emotional distress, not talking about medical harm. We all know about the problems with medical harm, but not all people are clear about solutions. I’m not that clear, either, but I’m working on it. I’m not talking about revolution any longer, just trying to make my piece of the pie work. And I need your help. My business has gone from eight programs to three, as detailed on our business site. I’m focusing on Poetry for Personal Power and building a timebank and peer support programs inside that network. This way psych survivors can share honest mental health information with people who need it, but we can get paid for our time. After all, this income thing is the limit for many of us that holds us back from doing what we love.

Sunset in Kansas City caught from Case Park overlooking the West Bottoms.

In January I was sure of my direction. I had a business plan, some fellowships and grants pending, and was talking to venture capitalists. Then I realized I hadn’t asked God about it. Now I finally feel like I understand His plan for the business, and it’s way different. But a much better chance of success, decent family time balance, less ego driven, and uses more of my passions and talents. I read an article in a The Sacred Fire Community’s magazine. This is a group that preserves Indigenous spiritual practices that are still intact. This article interviewed Andrew Harvey who says that many of the super effective activists have or had an element of the sacred in their approach.

So I’m going to take a bit of artistic licence here with Scripture (2 Corinthians 10: 3-5 The Message Translation) and tell how it seems like it might be for me:

The mental health system is unprincipled. It’s dog-eat-dog out there! The mental health system doesn’t fight fair. But we don’t live or fight our battles that way—never have and never will. The tools of our trade aren’t for marketing or manipulation, but they are for demolishing that entire massively corrupt culture. We use our powerful activist-tools for smashing warped philosophies, tearing down barriers erected against the truth of emotional distress, fitting every loose thought and emotion and impulse into the structure of life shaped by hope. Our tools are ready at hand for clearing the ground of every obstruction and building lives of hopeful enjoyment into maturity.

The post Spiritual Emergency Round 2: Smashing Warped Philosophies appeared first on Mad In America.

- William Styron

“I am the wound and the knife!…
Victim and hangman alike.”

- Charles Baudelaire

A recent front-page article in the New York Times presented some some disturbing news–suicide rates among middle aged Americans’ have risen sharply in the past decade — up nearly 30% among Americans aged 35 to 64.  According to the Centers for Disease Control and Prevention, more people now die of suicide (38,364 people took their own lives in 2010) than in car accidents.

When a person dies by suicide, it is a double disaster. Not only does it prematurely end a life, it wreaks havoc on the lives of those left behind. Devastated survivors are traumatized by feelings of grief, guilt, anger, resentment, and confusion. “There was no time to say good-bye,” and “Perhaps I could have done more” are examples of comments made by shell-shocked friends and relatives. Moreover, the stigma surrounding suicide makes it difficult for family members to talk about what has happened.

Because of the wreckage that a suicide leaves in its wake, many people describe suicide as a “selfish” act.  But to anyone who has experienced suicidal pain brought on by an episode of major depression, there is a different explanation. Death is chosen because suffering is so acute, so agonizing, so intolerable, that there comes a time — depending on the individual’s tolerance for pain and the available support — that ceasing to suffer becomes the most important thing.

This torment is magnified by the loss of hope. People in life-or-death survival conditions, such as being lost in the wilderness or being held prisoner of war, will dream and plan for the future in order to make their present conditions tolerable. The critically ill heart patient expresses his faith in his upcoming surgery by making a date to play golf six weeks after the operation. But the depressed person sees no viable future. There is nothing to look forward to, no dreams to fulfill, only the never-ending hell of the eternal present.

Such pain and despair descended upon me during an episode of “treatment resistant” depression that I wrote about in my previous blog. After nine months of unremitting suffering, I lost hope that the pain would ever stop or that I could do anything to change it. At this point an old college friend of mine serendipitously reentered my life. Teresa was a registered nurse who worked at the Oregon Health Sciences University Medical School, where she taught stress reduction to patients with chronic pain. Her classes were based on the groundbreaking work of Jon Kabat-Zinn, a meditation teacher featured in Bill Moyers’ 1996 PBS documentary, “Healing and the Mind.” Kabat-Zinn teaches the Buddhist practice of “mindfulness meditation” to patients suffering from intractable physical pain. Through employing his techniques, they learn to alleviate not just their physical discomfort, but their accompanying emotional distress as well.

I met with Teresa in her office at OHSU, where I described the nature of my psychic torment. “Facing pain is a learned skill,” Teresa responded. “When you are in a lot of pain, whether it is a migraine headache or suicidal torment, the pain dominates all of your awareness and becomes all- encompassing. It’s hard to remember a time when the distress was absent, and it’s hard to believe that it will ever go away. It’s as if both past and present are blotted out, and you are left stranded in your present misery.”
“At least you understand,” I remarked.

“However,” Teresa continued, “if you can release your judgment of your pain and just observe it, you will notice a very important fact about the nature of pain; pain comes in waves!”

Upon hearing these words, I remembered the grief I felt after my divorce. There were times when I was so overwhelmed by sorrow and loss that I could barely function. After a period, however, the pain and the longing let up, perhaps for a day or two — until the heartache returned and began the cycle all over again — pain turning into relief, which turned into more pain, followed by more relief, etc.

“This is the body-mind’s built-in protective mechanism,” Teresa explained. “If the pain were truly nonstop, you wouldn’t survive. And so you are granted a few gaps in between the intense sensations to stop and catch your breath.”

But it feels like the pain is unrelenting,” I protested. “If you were clinically depressed, you would understand.”

“The key to reducing your perception of pain,” Teresa continued dispassionately, “is to uncouple the sensations in your body from the thoughts about them.”

“What does that mean?”

There are two levels of pain that you are feeling,” she explained. “The first level is physiological—the raw pain in your body. The second layer (and this is where you have some control) consists of how you interpret your experience. Perhaps you may be thinking, ‘This torment is killing me’ or ‘This will last forever’ or ‘There is nothing I can do about it’. Each of these despairing thoughts creates a neurochemical reaction in the brain that creates even more distress. If you can learn to detach yourself from these judgments, much of the pain that arises from them will diminish.”

“How do I do this?”

“Think of your anxiety or depression as a large wave that is approaching you. As the wave makes contact, see if you can ride the wave by focusing on your breath. Breathe through the sensations, breathing in and out while attending to the sound of your breathing. Don’t try to analyze what is happening, just breathe. It’s not even about getting through the day; it’s about getting through each breath.”

When I had worked as a salesperson in the corporate world, I learned the skill of breaking large goals into manageable parts. Now I discovered that one could divide pain into manageable parts. If I couldn’t handle getting through the day, I would try to make it through the next hour; if an hour seemed too long, I set my sights on the next minute or second.

Teresa showed me another powerful technique to use with my self-talk when my pain became intense. Whenever I cried, “My pain is unbearable,” Teresa would reply, “Tell yourself the pain is barely bearable.

“The pain is barely bearable,” I repeated aloud. There was a shift and I felt it.

In another session I screamed, “I can’t take it anymore!”

“You can barely take it,” Teresa responded.

“I can barely take it”, I replied.

Mental Illness as a Spiritual Practice

“Emotions are like waves;
Watch them come and go in the vast ocean of existence.”

- Neem Karoli Baba

Teresa was teaching me the practice of mindfulness, a spiritual practice of living in the present moment. In traditional meditation, when the mind wanders, one gently brings it back to a central focus (the breath, a candle, etc.). I was challenged to do the same, especially when, in response to intense emotional pain, I projected my present condition into the future using catastrophic self-talk that led to suicidal thinking — e.g., “If I have to put up with this suffering for the next 30 years, I might as well end my life now.”

“Just return to the here and now,” Teresa would say. “Over a period of time you can learn to relate differently to your pain. You can work with the pain and live around the corners of pain and develop your life around it. Eventually the turbulent emotional waters will become calm again. In the meantime, you can find inner stillness and peace right within the most difficult life situations.”

“You’ve got to be kidding,” I responded somewhat angrily. “How do you expect me to stay centered when the emotional equivalent of a migraine headache is pounding my skull?”

“Stop fighting the pain and see it as your life,” Teresa calmly replied. “It doesn’t mean you should like your discomfort. But there is something transformative that happens when we simply allow ourselves to experience our pain without trying to judge, change or resist it in any way. Let me show you.”

At that moment, Teresa reached over and pressed a tender point between my right thumb and index finger (I later learned that it was a particularly sensitive acupuncture point).

“Ouch! That hurts,” I protested.

“Breathe into the place in your body where you feel the pain,” Teresa responded compassionately. “See if you can ride the waves of sensation as you would ride the ocean’s waves. As you do this, notice how the experience of your pain begins to change.”

I breathed into the soreness and observed that the pain in my hand softened and decreased, until I could hardly feel it.

“Good work,” Teresa replied. “Now see if you can do the same with your emotional pain.”

Mindfulness meditation did not work all of the time, but it worked enough. The moments of peace it provided, when combined with intense exercise and connecting with people, interrupted the pain cycle sufficiently so as to make my suffering “barely bearable.”

More information about Douglas’s approach to alleviating suicidal pain can be found at Healing From Depression.com.

The post Using Mindfulness Meditation to Cope with Suicidal Thoughts and Feelings appeared first on Mad In America.

These drugs are being prescribed to youth, some as young as 3 and 4 years of age.  My Big League Chew is more dangerous than Uncle Jim’s Seroquel or my big brother’s Adderall?  I asked my nephew if he could sell my double pack of Big Red at college for the same kind of cash he’s getting for his “extra” Ritalin.  He laughed and said, “No way, that stuff will kill you!”

Glancing at my Java suspiciously, I read on.  “Michael Taylor, FDA’s deputy commissioner of foods, said Wrigley’s decision to stop production for now “demonstrates real leadership and commitment to the public health.”  Guh!  Where is the “real leadership” and “commitment to the public health” of Big Pharma?  Where’s the FDA’s concern for documented, life-threatening, life-altering “side effects” (really just drug effects) of psychiatry’s magic bullets?

Feeling queasy now and a little light headed I attempted to finish the article, “Major medical associations have warned that too much caffeine can be dangerous for children, who have less ability to process the stimulant than adults. The American Academy of Pediatrics says it has been linked to harmful effects on young people’s developing neurologic and cardiovascular systems.”  UGGGH!  Through the nose this time.  What’s the AAP say about the harmful effects of Concerta, Depakote, Trazadone and Risperdal on young people’s “developing neurologic and cardiovascular systems”?

If you really think caffeinated gum is more dangerous than the currently prescribed drugs to treat “mental illnesses” this piece isn’t for you.  If you agree with me that this theater of the absurd is too much, grab your Double Mint and comment below. 

USA Today Story

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The main causes of dementia are probably Alzheimer’s disease pathology (plaques and tangles), Lewy Body pathology (associated with Parkinson’s disease) and multiple strokes (atherosclerosis).

But much of the clinical pathology of dementia is very likely associated with delirium/acute confusion added on top of the dementia: because dementia greatly increases the susceptibility to delirium.

And delirium is, in principle, treatable, improvable.

Just think how often it is observed that demented patients get better from time to time (not completely better, but much improved), and have a few good days, or at least a good few hours.

This strongly suggests that these ‘good times’ are the clinical picture of dementia without the delirium – and that most of the time these patients are delirious.

In an old and demented brain, suffering from degenerative disease, it takes little to flip into delirium – this can be triggered by drug treatment and drug interactions, an infection, dehydration, lack of sleep or disturbed sleep, trauma, underlying tumour, autoimmune disease, or subtle degrees of any disease – hormonal, of a major organ system, and so on..

If – although this may be impossible in practice – all these potential causes of delirium could be checked and treated, restored to normal – I suspect that much of the apparent ‘dementia’ would be relieved.

Greater attention to encouraging regular and restorative sleep (in particular) and hydration, and much greater attention to the perils of drug treatment might help many specific individuals?

This matter of a super-added psychopathology in dementia is usually conceptualised in terms of ‘depression’ – yet this is misleading. In the first place, mainstream psychiatry has no coherent concept of what it means by ‘depression’ – so this is not an explanation at all, but rather a suggestion for ‘antidepressant’ treatment.

And if the real problem is delirium, then many ‘antidepressants’ are likely to worsen the situation, especially due to anticholinergic side effects. In the elderly and demented drug side effects are much commoner and more significant (and harder to rule out) than commonly realized.

On the other hand, there are suggestive reports of demented patients (of various types) benefiting from treatment with electroconvulsive/ electroshock therapy. In particular, ECT seems to help some patients with ‘Lewy body’/ Parkinsonian dementia – where the fluctuating, delirious and psychotic aspects are especially marked. While ECT is sometimes regarded as an antidepressant, it is probably more accurate to think of ECT as having a more general anti-delirium effect.

The take-home message is that much of the clinical pathology associated with dementia is probably not being caused directly by the irreversible dementia, but is instead secondary to the microscopic damage caused by the dementing process, and is a consequence of potentially-reversible delirium.

So the obvious symptoms and behavioural problems of at least some demented patients some of the time may be mostly an acute confusional state, which will sometimes clear away to reveal a much less-severely impaired person.

The measure of how demented a person is, is when that person is at their best, having a ‘good spell’; and all the rest is quite likely due to superimposed, temporary and perhaps reversible delirium.

The post Delirium on top of Dementia appeared first on Mad In America.

However this video also captures something else. It has captured the first signs, the first moments of professional interest, for as I wrote in a previous comment regarding Robin Murray a psychiatrist who also presented at Intervoice, we have become a powerful organization. (See Robin Murray’s presentation and the ensuing debate by MiA readers)

I believe this video, ‘Voices Matter’ not only captures these first moments but also hints at the dangers that inevitably are present when a movement threatens the established order of things. The HV movement that arose from a gathering of, in psychiatry’s eyes, schizophrenics talking about their symptoms are today threatening to destabilize the biogenetic illness paradigm that is required for psychiatry to retain power over distressed individuals. For we introduce meaning and understanding, acknowledging the often dreadful life events that those labeled ‘schizophrenic’ have experienced and by so doing, to use psychiatry’s words, ‘cure’ people, something psychiatry is notoriously unsuccessful at. Indeed, Robert Whitaker’s book Anatomy of an Epidemic shows that psychiatry has introduced a state of chronicity that is reaching epic proportions throughout much of the world, not to mention a shortened life expectancy of, on average, 25 years for those labeled ‘schizophrenic’.

We are introduced in the video to Alison Brabban, a CBT psychologist who also spoke at the conference, followed by, in her case, a debate between her and the conference participants; many of whom are voice hearers from around the world. I am sure she means well and believes that she is ‘doing us a good service’. However, Alison is not just any CBT psychologist, so before I write more, I want to backtrack historically speaking, so as to frame her and many other CBT psychologists.

The recovery movement, initiated in the 1970’s by survivors, shook psychiatry to its core. Originally rejected by the psychiatric establishment, psychiatry has later been forced to acknowledge and now incorporate recovery into its daily praxis. This has meant that chronicity, previously associated with schizophrenia, has been deconstructed, so though schizophrenia in the eyes of psychiatry is the diagnosis most associated with a biological etiology, the fact that people have and do recover challenges that biological foundation; so much so, that new stories must be created to incorporate this inconsistency.

Therefore, no longer able to avoid social context completely the new story that has proven to be highly successful at incorporating this inconsistency for psychiatry is the Vulnerability-Stress Hypothesis. This is an extremely good model, for here social context is readily acknowledged as playing a role, however psychiatry then immediately denies this causal role of social context by implying that the only reason a person reacts to their environment is because the person is vulnerable (= genetically predisposed to, e.g., schizophrenia) to start off with. Thus once again social and environmental contexts are neatly put in their place as inconsequential and the focus can, once again, return to psychiatry’s biogenetic explanations for human distress albeit in new wrappings, with a lucrative chemical solution. In other words, the psychiatric paradigm of care is unchanged; in fact, they have managed to make it sound better, as being told one is vulnerable is better than being told one is genetically defective.

However, psychiatry can no longer ignore life stories in quite the same way as before, therefore to give the impression that they are valued in psychiatry and that psychiatry is recovery orientated; therapy has now been introduced in the form of… Yes, you guessed it, CBT. Now why CBT? Because it never challenges psychiatry simply because it, too, rejects life stories by not engaging with it them. Instead CBT is a series of techniques to change thoughts and behavior in the here and now. Because it is also a manualized technique it lends itself very well to the research methods preferred by psychiatry and therefore situates itself extremely well within the psychiatric research paradigm.

This has opened doors for psychologists to enter the prestigious corridors of the psychiatric system and share in the powers that are invested there. Again I am not rejecting CBT it has many useful tools and I use CBT methods if and when they are applicable in my eclectic toolbox when trying to support people who are suffering. Indeed Richard Bentall has done some very interesting work from a CBT perspective. But its role in giving the illusion of a therapeutic psychiatry has been very damaging for the recovery movement and certainly in Denmark the ‘severely mentally ill’ i.e. those who suffer psychotic breakdowns do not have access to therapy. In 2009 which is the last time the Danish psychological society looked at who got psychological support (CBT) in psychiatric settings only 8% of those with psychosis were offered therapy. This is a telling figure when one considers that the hospitals tend to be filled mostly with people who fulfill the criteria of being severely disturbed, i.e. psychotic.

There are those who argue, myself included, that the recovery movement has been colonized. It was such a threat that when recovery wouldn’t go away the next best thing was to take it over, as going into a direct confrontation would have meant that the myth of mental illness to quote Szasz could potentially have become public in the sense that psychiatry might well have been seen as having no clothes on. So now psychiatry has changed garments and is now wearing its new ‘recovery outfit’ and the public though skeptical have bought into it.

I would today posit that the HV movement is now psychiatry’s biggest threat. After all ‘schizophrenia’ is psychiatry’s raison d’être if one is to go by the amount of research, human rights abuses and fear mongering that surrounds what can arguably be seen as the most extreme expression of human distress. To keep this form of expression as meaningless madness, justifies psychiatry’s position of power, its treatments and the illusion that psychiatry is a scientific endeavor. However, not only does the HV movement make madness meaningful, normalizes voices and other unusual beliefs, it offers a true alternative to helping people to not just exist as marginalized, medicalized people, but to truly recover and become fully functioning and contributing citizens in the community. In all my years working in psychiatry as a psychiatric nurse I never saw that happen there.

So to return to Alison and my statement that she was not just any CBT psychologist. She is highly placed in academia working as a staff member at the school of Medicine, Pharmacy and Health at Durham University, she works as a Consultant Clinical Psychologist in early intervention for psychosis and has published papers in such prestigious annals as the Schizophrenia Bulletin and the Psychiatric Bulletin. Yet she is at Intervoice, why? Psychiatry promotes CBT, Alison represents psychiatric CBT, and it is clear from this video her mission is not to meet us, the voice hearers, but to bring us back to the fold, so to speak. Her message is: if we listen to her words of reason we will see the error of our ways, because to get into accepted mainstream psychiatry we, and our methods, must be evidence based and very importantly conform to the ‘traditions’ set out by the psychiatric paradigm so as to be allowed in.

This video shows how completely she has misunderstood the whole concept of the HV movement. Our strength lies in doing exactly what we are doing which is refusing to conform, refusing to value psychiatric guidelines, refusing to engage with traditional psychiatry and instead choosing to work outside of psychiatry in a true post-psychiatric manner. For the HV movement is also a civil rights movement. Can you imagine women fighting for women’s rights saying yes to presenting models of emancipation to men so that they can be researched and tested to see if they work? Or, slaves going to their masters with methods on how to set themselves free which can then be judged and juried by the slave owners? No I think not! But if we were to conform, if we were to accept the guidelines and traditions of the psychiatric paradigm then yes we would become part of psychiatry… but we would disappear our voices silenced once again as colonized patients.

Therefore, my comments here are referring to the very real dangers of colonization, and my question is how do we prevent being colonized? We are now on the map, we threaten the whole concept of schizophrenia, in fact, we threaten to profoundly destabilize psychiatry. Therefore, it would be extremely naïve to believe psychiatry has seen the light and wishes to value our ways. In fact to be honest I am offended that two people so entrenched in traditional psychiatry think that we would fall for transparent platitudes and promises of being allowed to sit at the high table of psychiatry as evidenced by Robin Murray and Alison Brabban’s presence at Intervoice. (See Robin Murray’s presentation)

I have chosen to focus on only one aspect of what is told in this video yet this video has so much more. It has not only managed to capture the first hints of psychiatry’s interest, its sniffing around but, more importantly, it has captured the spirit of the HV movement, the diversity, the power and the beauty of the song of our voices! How wonderful that the first video of what is going to be ongoing presentations by MiA is about the Hearing Voices Movement!

The post Colonization or Postpsychiatry? appeared first on Mad In America.

Psychiatric diagnoses, he correctly points out, are symptom-based. Scientific advances in molecular genetics and other basic sciences (including neuroscience) over the last fifty years has enabled the rest of medicine to abandon syndromal systems of classification in favour of systems based in a deeper understanding of molecular pathology. The RDoC (what an evocative acronym, redolent of crushed velvet loons, Jason King, platform heels, Zapata moustaches, and Robert Spitzer) is a new project drawing together genetics, imaging and cognitive science to lay the foundation for a new system of classification based in a set of assumptions that include the beliefs that ‘…mental disorders are biological disorders involving brain circuits that implicate specific domains of cognition, emotion, or behavior. Each level of analysis needs to be understood across a dimension of function, and [m]apping the cognitive, circuit, and genetic aspects of mental disorders will yield new and better targets for treatment’ (Insel, 29th April, 2013).

Dr. Insel stresses the point that the RDoC is a research not a clinical tool. Doubtless he will have his eye on some of the $100 million pledged by President Obama for the BRAIN initiative on 2nd April this year ( http://www.whitehouse.gov/infographics/brain-initiative) in his quest for the neuro-validity of psychiatric disorders. Indeed, in a blog published on 10th April 2013 (http://www.nimh.nih.gov/about/director/2013/new-views-into-the-brain.shtml) Dr. Insel indicates that this is the case. And of course, the neuroscience brigade over here will be hot on their coat tails, following the announcement in January by the European Commission of the Human Brain Project (http://www.humanbrainproject.eu), as a ‘European Flagship’ (Maybe they meant a European Flagship of Fools).

Enough jocularity! This is meant to be a serious post, and it is, but the world seems to be going neuro-mad, or suffering from neuromania as the writer and polymath Raymond Tallis has put it. In this blog I want to raise some serious questions about the nature of the understanding of ourselves as human beings that neuroscience provides. Indeed, there are strong arguments from within philosophy that neuroscience has nothing to say about what it means to be a human being, to be conscious of the world and others, to have feelings, emotions, beliefs, to love, to hate, to be in despair, to hear voices, and to be mad.

There have been a number of recent critiques of neuroscience, and all are to be commended. Alva Noë is a neuroscientist and philosopher. In Out of Our Heads (Noë, 2009) he argues that consciousness is not ‘in our head‘ but originates in our engagement with the world we find ourselves in. Nikolas Rose and Joelle Abi-Rached’s Neuro, is a comprehensive social critique of the origins and role of neuroscience in contemporary culture (Rose and Abi-Rached, 2013). Both these books are illuminating and thoroughly worth reading. However, the most erudite and detailed critique of neuroscience is to be found in Raymond Tallis’s (2011) recent book, Aping Mankind. Tallis, whose until recently was a clinician and Professor of Geriatric Medicine in the University of Manchester, is deeply sceptical that neuroscience has anything to tell us about what it means to be a human being. Much of his ire is directed at neuroscientific research that claims to have identified the neural basis of romantic love (Bartels & Zeki, 2000), or our responses when we listen to a piece of music we haven’t previously heard (Salimpor et al, 2013), but his criticisms are applicable to recent neuroscience research into the neural basis of madness. A good example are functional Magnetic Resonance Imaging (fMRI) studies that claim to show that the experience of verbal auditory hallucinations is caused by activity occurring in specific areas of the brain (see, for example van Lutterveld et al’s 2013 meta-analysis). Tallis’s arguments about studies of functional Magnetic Resonance Imaging (fMRI) in perception are directly pertinent to their use in people diagnosed with schizophrenia or other psychiatric disorders, especially the assumption that brain activity causes experiences like hearing voices.

At first glance the latest generation of functional brain imaging technology, offers an attractive view of consciousness. This view is a literal one; fMRI scans enable us to see activity in different areas of the brain when subjects are involved in different tasks, or in people who have psychiatric diagnoses like schizophrenia. Neuroscientific explanations of consciousness appeal to simplicity because they are fundamentally flawed. This is because it fails to engage with one of (Western) philosophy’s most difficult and enduring problems: the relationship between body and mind, or brain and consciousness. The problem can be posed as a question: what is the nature of the relationship between the physical events that occur in our brains and the contents of our consciousness, our thoughts, emotions, beliefs, perceptions, memories and so on. Tallis argues that although neuroscience appears to address the problem of the body/mind relationship it only does so because it confuses three different types of relationships, correlation, causation and identity. This has three main consequences, which in turn have profound implications, not only for how we think about consciousness, but also about what it means to be a human being. It follows that this is true also for the way we understand of madness and distress, unless you argue that there is something intrinsically different about the brain/consciousness relationship in mad people. That way leads to the extermination camp. The first consequence concerns the role of the observer (or subject) in consciousness; the second concerns the role of the world (or contexts) in consciousness; the third concerns the problem of intentionality. Neuroscience, Tallis argues, tries to account for consciousness in ways that avoids or evades all three.

1. The role of the observer

If we see activity in particular areas of the brain when someone reports that they are hearing voices, we are wrong to assume that the activity seen on the brain scan is either the cause of the experience or identical with it. A correlation between two events is not the same as saying that the two are the same thing (identical) or that one causes the other:

Seeing correlations between event A (neural activity) and event B (say, reported experience) is not the same as seeing event B when you are seeing event A. Neuromaniacs, however, argue, or rather assume, that the close relationship between events A and B means that they are essentially the same thing. (Tallis, 2011: 85)

For example it follows from the identity argument that if I look at a yellow flower the experience I have of yellow should be the same as the activity in my brain. This is clearly not so. As Tallis points out, there is nothing ‘yellow’ about the nerve impulses and brain activity in the relevant parts of my visual cortex. Or, to take another example, if someone has an fMRI scan when they hear the voice of God saying that the moon will crash into the Pacific Ocean tomorrow morning, then if the brain activity is the same as the experience, then this activity should have a divine quality about it. More than that, it should also have lunar and oceanic qualities, as well as an emotional quality of catastrophe and impending disaster. This is clearly nonsense. All the qualities associated with the experience of hearing the voice of God saying that these things will happen, and the neural activity in the relevant parts of the cortex, are completely different.

Neuroscience tries to get round this difficulty by the ‘double aspect’ theory. This states that although there is only one set of (physical) events in the brain, these events have two aspects, a neural side and experiential side. A good example of this is to be found in the work of the philosopher John Searle (1983), who used the theory to explain how it is possible for water, which in our experience is wet, shiny and slippery, to be constituted by molecules of H₂0 which have none of these qualities. We can understand the relationship between brain activity and the contents of consciousness in the same way. Consciousness is made up of experiences (like the colour yellow, or hearing the voice of god) and although these are nothing like the nerve impulses that occur in association with the experience, they are nevertheless different aspects of the same thing.

Tallis unpicks this by asking what is meant here by ‘aspect’ For example, does it bear comparison with an object like a house that has different aspects, front, side and rear. If so, it is impossible to think of any sort of thing that has a mental or experiential front aspect, and a neural or material rear aspect. The double aspect theory breaks down because the different aspects of a house are nothing like the difference between a physical event such as the pattern of cortical activation in the brain of someone hearing a voice, and the qualities of that experience for the person who has it. Indeed, it is only meaningful to talk of the two aspects of a house from the point of view of an observer who is free to vary her or his position in relation to the house by walking around it, and seeing it from different angles:

To invoke doubled aspects is to cheat: it smuggles consciousness in to explain how it is that neural activity, which does not look like experience, that actually is such experience. (Ibid: 86, emphasis in the original)

The critical point that Tallis draws our attention to is that like the different aspects of a house, both aspects of water, the experience of its wetness and so forth, and H₂0 molecules, require an observer who can see that these are both aspect of the same thing. In order to be aware of the difference, however, the observer requires different ways of seeing, one through the senses directly (in the case of water), the other through an electron microscope or similar technology that makes it possible to be aware of the existence of molecules of H₂0. Furthermore, Searle argues that the experiential qualities of water experienced by an observer or subject, are caused by the physical properties of the molecules of H₂0. In other words in the double aspect theory of consciousness maintains that brain events stand in a causal relationship to the experiences of consciousness. But it doesn’t make sense to say that brain activity is the same as consciousness, and that it causes consciousness. Cause and effect stand in a different relationship to identity and sameness. It is nonsense to say that the front aspect of a house causes the rear aspect. The relationship between the two requires something else, an observer who is free to explore the house by walking around it. The key issue here is that neuroscientific accounts of consciousness overlook the need for a conscious observer, a subject, a seer, feeler, an experiencer. Water looks and feels the way it does because someone is conscious of it. The same holds for the experience of hearing voices; we may observe the experience in different ways. In one, the subject of the experience introspects, or is simply aware of the experience, and hears the voice of God. In the other the fMRI scan reveals activity in the brain, but here the comparison breaks down, because an fMRI of the brain activity of someone hearing the voice of God is not something that can be experienced in the sense that the voice of God is experienced by the person hearing it. Likewise, the voice of God has the qualities it possesses because an observer, a conscious subject, is aware of it.

1. The role of the world 

If consciousness is nothing more than brain activity, then we are entitled to ask what role does the world play in it? After all, two sets of observations suggest that the external world may not be that important for consciousness. The Canadian neurosurgeon Wilder Penfield became famous for his work in the surgical treatment of intractable epilepsy. He surgically removed the area of the cortex responsible for the focus of seizures, but to do so safely he had to make sure that he removed only the area of responsible for the fits, and not areas that were important for speech, movement or sensation. Apart from a local anaesthetic to the scalp and bone of the skull, his patients were fully conscious (brain tissue itself is insensitive to pain) so he was able to get them to report what happened when he electrically stimulated the exposed cortex. When he did this to the temporal lobes, patients reported vivid and complex experiences often relating to past experiences. It was as though they were watching a familiar scene from outside. These experiences, remember, were generated internally, through brain activity, without reference to what was happening in the world at the time. The second strand of evidence is the complex experiences such as perceptual changes and hallucinations that people have when they are under the influence of psychoactive drugs.

The Brain in a VAT

This gave rise to a famous thought experiment in philosophy, Hilary Putnam’s ‘Brain in a Vat’. (The influence of Putnam’s though experiment can be seen in the film The Matrix) The experiment proposes that if neural activity alone is sufficient for experience, and the origins of this activity are irrelevant (as is the case in Penfield’s experiment, or someone on LSD) is it possible that we are deceived as to our true nature? For example, how do I know that I am nothing more than a brain suspended in a vat of nutrient fluid and kept at the correct temperature? Neuroscience holds that in theory my brain could be connected to a powerful computer which stimulated it in such a way that gave rise to all the experiences that I have at the moment, sitting in my study, an ache in my right shoulder, listening to Steve Reich’s Music for Eighteen Musicians, aware of an itch I want to scratch on my left ankle, and rushing through writing this article because there’s a football match on television I want to watch in half an hour. In principle all these contents of my consciousness could be generated by a computer stimulating my brain. It would be impossible for me to know whether or not the world existed, or at least if it did, that it simply wasn’t relevant to the contents of my consciousness. If such a situation were possible, it would justify a wide range of sceptical positions about the world we experience.

The obvious flaw in the experiment, as Putnam (1982) points out, is that it would be impossible to conceive of the thought ‘I am a brain in a vat’ without a world that contained brains, vats, computers laboratories, and scientists necessary to run the experiment and so on. Tallis points out that the experiment is valuable because it reveals the absurdity of claiming on the one hand that neural activity is correlated with conscious experience, and then claiming that brain activity causes conscious experience and indeed is the same thing as it; ‘This way lies the madness of concluding that a stand-alone brain could sustain a sense of a world’ (ibid: 92) The problem with cognitive neuroscience is that it accounts for consciousness without reference to the world outside. It makes no difference if those representations originated in external stimuli in the here and now, or whether they are representations of memories, images and words from or past. All that matters are the mechanisms, processes and calculations carried out by the brain in processing the information that constitutes these experiences. It is important to remember, though that in Penfield’s experiments stimulation of the cortex evoked real memories his patients had had in a real world. These experiences had a vividness and an ‘aboutness’ for his subjects that indicates that these were real experiences that had happened to real people.

“…it is necessary to appreciate that our ordinary memories, and our ordinary current experiences, make sense because they are part of a world. Yes, we are located in this world in virtue of being embodied and we access it through our brains; but it makes sense to us, as a world, not solely on account of its physical properties but as a network of significances upheld by the community of minds of which we individually are only a part.” (ibid: 93, emphasis in the original)

This sense of ‘aboutness’ leads to the third problem, that of intentionality.

Intentionality

This really highlights the difference between the view of consciousness provided by neuroscience, and consciousness as we experience it as human beings. The two are incommensurable, and we run into serious difficulties if we accept that the neuroscience view is the ‘correct’ one. We can see why this is through the difficulty that neuroscience has in dealing with intentionality. This concept rose to prominence through the work of the German philosopher Franz Brentano, in the second half of the nineteenth century. He used the word to refer to the experience we have that the contents of consciousness  have the quality of ‘aboutness’. Our perceptions are about things, but this applies to other contents of consciousness, such as our beliefs, fears, hopes and memories. Tallis uses perception because it is relatively straightforward, and he takes as an example a red hat on the desk in front of him. Neuroscience has no problem generating a causal chain of events that starts with the incident light on the hat, interacting with the atoms in such a way that light of a particular wavelength is reflected on into the eye. There the light produces physical changes in the retina that triggers nerve impulses that pass to the visual cortex located in the occipital lobes at the back of the brain. However, Tallis points out that our conscious awareness of the object involves much, much more than that. I am aware of presence of an object in space a couple of feet in front of me (Let’s assume for the moment it is Tallis’s red hat). It has its own properties, and a reality of its own. This means that my awareness of the object is as Tallis puts it, located causally upstream from the physical processes and events in my brain that are associated with my awareness of the object. The causal links from object to visual cortex pass in one direction, out -> in, but my experience of the paperweight passes in the opposite direction, from my brain to the paperweight, in -> out:

The key point, however, is that intentionality – my awareness of the hat – points in the opposite direction to the arrow of causation. It points from effects (nerve impulses in the higher levels of the visual pathways) backwards to their causes (the interference between the object and the light). And then it points further backwards to the partners producing the effects: the red hat and the light it is bathed in. (ibid: 105, emphasis in the original)

This curious but fundamental feature of consciousness has been the subject of years of study, research and scholarly work in philosophy, psychology and the physiology of perception, and is a deeply complex issue. The irony is that it takes banal neuroscientific accounts to remind us through intentionality of the wonder and complexity of consciousness. Neuroscience is incapable of explaining how physically-based activity in nerve cells can reach causally upstream back to the interaction between object and light to present in my conscious awareness an object that is clearly out there. More than that, it is not simply an object out there, but an awareness of something out there:

It is a revelation: of an object to a subject in which object and subject are kept separate and distinct, with the subject (me) being here and the object (the hat that I am looking at) being over there. (ibid: 106)

Neuroscience finds this aspect of consciousness so difficult to account for that it tries to conceal intentionality by incorporating it into causal theories of perception. The problem here is that we end up with a theory of consciousness that is possessed by the brain, not a person. My experience of the world is that of a person looking out at it, and as I do so, objects in the world stand out as meaningful for me. Particular objects have meaning for me because they are tied in some way to what has happened to me in my past.  Perception reveals the paradox of being human, our separation from a world of physical objects, and at the same time our immersion in a world of meanings and significance in that world. The most important feature of this in relation to madness is our struggle to find meaning in it, or impose meaning on it. There is no place in a causal neuroscience for these aspects of being because it is incapable of explaining them. Indeed neuroscience and neurophilosophy reject any discussion of ‘persons’ or relegate it disparagingly to what it calls ‘folk psychology’. Intentionality, as Tallis points out, is fundamental to what it means to be a human being. It lies at the heart of our self-awareness, our sense of others as beings like ourselves, and our ability to form intentions and thus become agents in the world. Consciousness is fundamentally relational. My awareness of the world stands in relation to that world and the way in which is stands out as meaningful for me.

Implications – a thought experiment you can try for yourself

Tallis’ critique has much in common with other critiques of scientific accounts of human experience, especially those of continental philosophers like Merleau-Ponty (1962). Both draw attention to the importance of understanding human experience as an embodied and encultured experience.  This gives rise to a different way of thinking about consciousness and I want to illustrate this with a thought experiment.

I would like you to look at an image that means a great deal to you. It might be a photograph of someone special, a painting, or some other image that moves you. First, I want you to ask yourself a question: how is it possible for this image to be present in front of me?

In front of me is an image captured by Don McCullin, the photographer, called Shell-shocked marine, Hue, 1968 (McCullin, 2003).  As I try to answer this question I think of the light falling on the marine all those years ago. I think of the camera, the lens and its optical elements, the diaphragm that set the aperture to regulate the depth of field, the shutter screen and the intricate mechanisms for controlling its speed, and thus the amount of light that reaches the film. That light impinged on the invisible silver salts in the emulsion, where photons caused physico-chemical changes that resulted in the release of visible silver particles. Then I move to the darkroom where more light and lenses, this time in an enlarger, were followed by more chemical processes as the first image developed. More recently someone has scanned the image and converted the light reflected off its surface into binary information to store and manipulate it in a computer so it can be printed out in the book that sits on my desk. Finally in this chain of causality are the events that I have just described, the light entering my eye, falling on my retina which is converted to nerve impulses that are transmitted back to the visual cortex of my brain, which lights up as I look at the image.

Now I want you to look at the image again, and consider the question why is it important to you? Why does it matter?

I remember vividly the first time I saw the Shell-shocked marine. I was waiting for a tram in Piccadilly Station, Manchester two a few years ago. The image was on the other side of the platform, advertising an exhibition of McCullin’s work at the Imperial War Museum North. The following weekend I had to see it. I stood in front of it and was drawn to the soldier’s eyes. Even today they strike me as intense and glazed at the same time. How can that possibly be the case? It doesn’t make sense to have eyes that are glazed and intense, but that’s how they seem to me. He stares through me, but I don’t know what he is staring at. Then it struck me; that’s not true. The truth is I’d rather not think about what he’s staring at. I dread to think about the horrors this man has witnessed, flickering in the space a thousand yards behind my head. At the same time the fixity and terror of his gaze is at odds with his appearance. He seems to have no neck. As he cowers in fear his head seems to be set directly on his shoulders, and is also somehow too big for his body. This gives him a faintly mechanical appearance, like a child’s puppet frozen in time. Perhaps that is how he sees himself, were it possible for him to have seen himself in the state he was in. Then I wonder if this is how he felt, a petrified toy soldier, an automaton without any will, under someone else’s control. His fingers curl around the barrel of his rifle as though they were carved from the same piece of wood. He is inseparable from his gun; they are one and the same. All these reflections, conflicting, paradoxical, puzzled, flashed through me the first time I saw the image. Finally I think about the man who took the photograph, of Don McCullin and the courage it took to do his work. I also think about the camera he used to capture the image. It was a Nikon F, which was tied to his life in a terrifying way. In Vietnam a sniper’s bullet hit his camera, saving his life.

When I try to answer the question, how did this image come before me, I find myself making a deliberate effort to break it down into discrete stages or processes involving optics, chemistry, quantum physics and the manipulation of digital data. Each has its own set of rules and laws, ending up with the physical processes in my brain. As I try to answer the question, something changes in my relationship with the image. It is not possible for me to answer the question how did this image come before me, and be engaged with it in the way I am when I try to answer the second question, why. I have to disengage from the image so that it is no longer present to me in the way that it was when I first encountered it in Piccadilly Station, a powerful icon of war and suffering. On that first occasion the image had a powerful emotional impact on me. It stood out before me as something that I could not avoid grappling with, the soldier, the suffering he was involved with, his suffering, and the courage of the man who took the photograph. In this mode of being I am drawn into the image. It preoccupies me and fills my awareness to the exclusion of everything else, evoking a range of responses, some contradictory, but never ending. Each time I engage with it in this way I become aware of new responses, and in that sense the image is endless and never fixed, impossible to be determined. Indeed, we may see the question ‘how’ and the scientific explanations that arise from this, as simply one aspect of my continuing responses to the presence of the image before me.

The neuroscience account of consciousness denies the possibility of free will. Everything that makes us human is determined by physical processes in the brain that obey natural laws. The thought experiment also questions this view of ourselves. We can choose to look at another human being as an object determined by physical laws, or as a person like but apart from ourselves, with fears, terror, hope, and in need of human comfort and care. Setting philosophical arguments aside, the clearest evidence that a neuroscientific psychiatry is seriously off track has been the rise of the survivor, service user, c/s/x, or ervaringsdeskundigen. The work of organisations like the Hearing Voices Network and the Icarus Project is proof of the sterility and lack of humanity of science-dominated psychiatry. We have a great deal to learn from this, most of all about the importance of supportive and caring human relationships in helping people who experience madness and distress.

References

Bartels, A. & Zeki, S. (2000) The Neural Basis of Romantic Love. NeuroReport, 11, 3829 – 3834.

McCullin, D. (2003) Don McCullin, London, Jonathan Cape.

Noë, A. (2009) Out of our Heads: Why you are not your brain, and other lesons from the biology of consciousness. New York, Hill and Wang.

Merleau-Ponty, M. (1962) Phenomenology of Perception. (Trans. C. Smith), Routledge & Kegan Paul, London.

Putnam, H. (1982) Reason, Truth and History. Cambridge, Cambridge University Press.

Rose, N. & Abi-Rached, J. (2013) Neuro: The New Brain Sciences and the Management of the Mind. Princeton, Princeton University Press.

Salimpoor, V., van den Bosch, I., Kovacevic, N., McIntosh, A., Dagher, A., and Zatorre, R. (2013) Interactions Between the Nucleus Accumbens and Auditory Cortices Predict Music Reward Value. Science Vol. 340 6129 pp. 216-219 DOI:10.1126/science.1231059

Searle, J. (1983) Intentionality: An essay in the philosophy of mind. Cambridge, Cambridge University Press.

Tallis, R. (2011) Aping Mankind: Neuromania, Darwinitis and the Misrepresentation of Humanity. Durham, Acumen. (Chapter Three, pp 73 – 146)

van Lutterveld, R., Diederen, K, Koops, S. et al (2013) The influence of stimulus detection on activation patterns during auditory hallucinations. Schizophrenia Research. 145, 27-32. doi: 10.1016/j.schres.2013.01.004

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Cannot Explain Madness appeared first on Mad In America.

CDC analyzed National Vital Statistics System mortality data from 1999–2010, and found that the suicide rate among Americans aged 35–64 years increased 28.4 percent (from 13.7 per 100,000 population in 1999 to 17.6 per 100,000 in 2010).

Among American men aged 35–64, the suicide rate increased 27.3 percent from 1999 to 2010, and among American women aged 35-64, the suicide rate increased 31.5 percent. Among men, the greatest increases were in those aged 50–54 years old (49.4 percent increase) and those aged 55–59 (a 47.8 percent increase). Among women, suicide rates increased with age, and the largest percentage increase in suicide rate was observed among those aged 60–64 years, a 59.7 percent increase for this group of women.

The suicide rate of those grouped as “whites” increased 40.4 percent from 1999 to 2010, the second highest increase among ethnic/racial groups. The highest increase among ethnic/racial groups was for “American Indian/Alaska Natives,” who saw a 65.2 percent increase in suicides.

Why the Increase in Suicide among Middle-Aged Americans

The CDC notes, “Possible contributing factors for the rise in suicide rates among middle-aged adults include the recent economic downturn (historically, suicide rates tend to correlate with business cycles, with higher rates observed during times of economic hardship).” Other researchers point to the recent economic downturn with more certainty as the major culprit.

The medical journal the Lancet (“Increase in State Suicide Rates in the USA During Economic Recession,” November 2012) reports, “Coinciding with the onset of the recession, the suicide rate accelerated.” Specifically, the Lancet reports that in the years before the onset of the financial crisis (from 1999 to 2007), the U.S. suicide rate was rising on average at a rate of 0.12 per 100,000 per year; while after the recession, there were an additional 0.51 deaths per 100 000 per year, and the Lancet calculates that “this acceleration corresponds to an additional 1,580 suicides per year.”

The Lancet details the relationship between unemployment and suicide, concluding “rising unemployment could account for about a quarter of the excess suicides noted in the USA during this time,” and it adds that “future research should explore other risk factors such as foreclosures and job and income losses, and modifying factors such as gun control policies.

Another telling study is “Impact of Business Cycles on US Suicide Rates, 1928–2007,” published in the American Journal of Public Health (June 2011). As would be expected, the study authors report that “analyses showed that the overall suicide rate generally rose during recessions and fell during expansions.” Suicide rates of those aged 25 to 64 years rose during economic contractions and fell during expansions; however, suicide rates of the groups aged 15 to 24 years and aged 65 and older were significantly less affected by economic downturns and upturns. This finding echoes the May 3, 2013 CDC report that states suicide increases among those aged 10–34 years and those older than 65 were “comparatively small and not statistically significant.”

One explanation for differences among age groups with respect to suicide increases is that Americans aged 10–34 years and those older than 65 are more insulated from financial hard times. Those younger than 34 may not yet be on their own and are less likely to lose a home in foreclosure; and Americans aged 65 and older have social security and Medicare. Americans aged 34-64 are more likely to have no financial safety nets, making the threat of unemployment more likely to create debilitating anxiety, and the consequences of unemployment more likely to result in depression and suicide.

Preventing Suicide in Middle-Aged Americans

The CDC speculates that another possible reason for the substantial increases in U.S. suicide rate for middle-aged Americans might be a baby boomer generation cohort effect, as the baby boomer generation had unusually high suicide rates during their adolescent years, and so CDC recommends that special attention with regards to mental health prevention strategies be provided to this possibly more vulnerable group. The CDC report also offers up the 2012 Surgeon General’s National Strategy for Suicide Prevention approaches that “enhance social support, community connectedness, and access to mental health and preventive services, as well as efforts to reduce stigma and barriers associated with seeking help.”

What neither the CDC, the U.S. Surgeon General, the National Institute of Mental Health, nor other major U.S. mental health institutions emphasize is this: Suicide, depression and many other serious emotional difficulties can be most easily prevented by political courage and different public policies, not by medical treatments.

While the CDC acknowledges that “possible contributing factors” for increased suicide rates include the recent economic downturn, the research, history, and common sense make it obvious that the recent financial meltdown is the major culprit for the substantial increase in suicides among middle-aged Americans.

The Lancet estimates that the three-year recessionary period from 2008 thru 2010 was a source in the United States for “4,750 excess suicide deaths.” This increase was not caused by genetically induced biochemical brain imbalances, but by criminal Wall Street practices. If Wall Street scoundrels caused the economic meltdown, and the financial meltdown resulted in increased suicides, more important suicide prevention than increased mental health treatment would be incarcerating some of these criminals so as to serve as a deterrent for future irresponsible behavior, practices that have proven to be quite deadly.

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

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For everyone who goes on psychiatric drugs, the reason comes back to power imbalances in their personal life. Women who’s husbands “make all of the money” and have an unequal share of the power, kids who’s parents have power over them—frequently people who have less money and security, therefore less platform for authority than those around them. Mental illness is not in fact an illness but an unequal division of power and sense of security in a social group.

Almost everyone I speak to who has been labeled also just happens to be the one in their family with the least amount of money and resources. So are mental health diagnoses a form of class warfare and income discrimination? I’ve never met someone labeled mentally ill who was without abundant offerings and gifts, only those whose contributions hadn’t been recognized. Not recognizing a certain individuals’ place in the world is a sign of a blind spot we have as a society, unless we believe some people are “extras,” born into the world without a reason.

Would mental illness be able to survive without the food of capitalism? If everyone was guaranteed basic needs of food, clothing, shelter and their choice of health care, where would mental illness fit in? Is it possible we can squeeze mental illness out by creating a cooperative society that includes everyone, determined to draw out the offerings of every individual, unwilling to discard anyone?

In the past couple of months I’ve been looking for new housing at the same time as starting a new business and living with a room mate I don’t enjoy. I’ve thought many times of how having a home and a certain amount of money in my bank account and certain daily routines, including ample time alone, are necessary for my sense of stability (and sanity?). I don’t think a lot about sanity since I’m not sure what it is, but I do know that my ability to be calm, clear and centered feels fragile sometimes. Sometimes it feels so dependent on the right balance of so many different factors that my belief in a Higher Power is affirmed when it occurs at all! Fragile and sensitive as I feel much of the time, when I leave my hermitage and go out into the denser world, amongst people who don’t seem to need daily meditation, hours of quiet solitude and writing each day, organic whole foods, clean air, non-toxic medicine etc. etc. I can feel like a fish out of water. Still the sturdier, “less fragile” seeming people I see rarely strike me as sane—in fact I often feel insane around them. And when we call someone insane isn’t it because we feel insane around them? Whether this is a reflection of me or them may be debatable, but there is a different vibration, one that is out of touch with sensitivity and seems to be going from one addiction to the next. Is this the mental health we are striving for? Normalcy? No.

First of all, if you are in America, a good number of the people you see everyday and think are normal are probably on psychiatric drugs since over 49 million of us (and counting) are on them. Second, most people who seem normal or even well, have their own misery underneath. The mental illness model encourages a lot of belly button gazing where people feel there is something inherently wrong with or different about them. Yet happy, balanced people are the anomaly—in fact I’m not sure if I’ve met any in years. In a society that rejects such a high percentage of the population as mentally ill, it is hard for anyone to be balanced. We have lost a good percentage of the social resources available to us!

When I see first hand the intensity of our suffering due to the dominant paradigm of class oppression, and see how widespread this condition is, I know we need safer spaces for people going through transformation. How can one heal in the throes of being controlled by those with more socio-economic power? The number of people suffering at the hand of psychiatric drugs is enough to make many depressed just thinking about it. Yet, it is a reflection of the larger power imbalances in our culture, including gender, class, race, and age and the many power manipulating nuances that go along with each of these. Addressing injustices in the mental health system MUST go hand in hand with the other power imbalances we are struggling with as they are the root cause of psychiatric evils.

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Faced with questions about the $3 Billion fine imposed on GSK – is it just the cost of doing business? – Andrew Witty snapped back:

“Although corporate malfeasance cases end up looking very big, they often have their origin in just… one or two people who didn’t quite do the right thing. It’s not about the big piece. The 100,000 people who work for GSK are just like you, right? I’m sure everybody who reads the BMJ has friends who work for drug companies. They’re normal people… Many of them are doctors.”

The current action against the European Medicines’ Agency (EMA) in the European Court is the first time Pharma has taken the regulator to a Supreme Court since the Panalba case (see Tragedy).

The 1962 amendments to the Food and Drugs Act required a determination of efficacy for any drugs marketed. In the case of drugs that had been licensed prior to 1962, FDA put in place a Drug Evaluation Study Initiative (DESI) to determine if they were likely to be efficacious. DESI convened panels of academics to adjudicate on these drugs.

FDA and many academic physicians, including Louis Lasagna, did not approve of combination products, whether antibiotics, analgesics or psychotropics of which there are plenty on the market. DESI recommended removing a large number of these. Lasagna’s career changed forever when he came out against this recommendation (see Tragedy).

In 1969, DESI recommended removing Upjohn’s Panalba, a combination of tetracycline and novobiocin. By FDA’s calculations Panalba was likely responsible for 12-15 deaths per year that wouldn’t have otherwise happened if doctors had used tetracycline alone. At the time Panalba was making $18 million per year for Upjohn – 12% of their income; $1 million per death. There was evidence that Upjohn knew of the risks the drug posed and in house evidence that Panalba was no more effective than tetracycline alone.

The options for Upjohn were:

1. To pull the drug immediately from the market,
2. To stop production but let doctors use up the supplies available,
3. To continue to produce but stop marketing,
4. To continue to produce and to promote until it was actually banned,
5. To attempt to overturn FDA’s decision using the Government and Judicial System

The company chose option 5. It involved the Secretary of State for Health in the Nixon Administration and pursued a legal action all the way to the Supreme Court.

When the details of the case were presented some years later to business management students in the University of Pennsylvania, Scott Armstrong found that none of his class supported Upjohn and all bar two of the 71 found Upjohn’s behaviour irresponsible.

But when he got students to role play the Upjohn Board and faced them with the decision to pull the drug or not, he found to his astonishment that 79% of respondents opted to take the same course of action as Upjohn and none withdrew the drug. This result has been widely replicated in different national groups with socialist Swedes behaving the same as capitalist Americans, and the idealistic young in just the same way as their cynical elders.

Debriefing the subjects and attempting to adjust the board and the circumstance to see if behaviour could be modified, Armstrong and others were left with the conclusion that it is generally accepted that the primary duty of Board members is to stockholders rather than to society at large. Board behaviour can be modified by appointing stakeholders but even then few Boards opt to remove Panalba from the market.

Armstrong modified the role play experiments by introducing an Upjohn safety officer who told the Board that the company did have hidden evidence supporting the complaints – to no effect. In real life not even the death of the CEO’s wife from suicide, from the Company’s drug Prozac, has led to a decision to pull the drug or add warnings.

Putting people in a group where the unstated assumption is they will behave like a proper Board produces a situation which has commentators reaching for comparisons with the Milgram experiment where decent ordinary people in experimental settings can be induced to give life-threatening shocks to innocent strangers simply because they are asked to do so by the conductor of the experiment.

The only thing that appears to modify the likely behaviour of a Board is a threat of boycott – that is if maintaining the drug on the market led to a disenchantment that led the company share price to fall.

While accepting Andrew Witty’s suggestion that he and other employees of GSK are just like us, few of us can imagine being party to behaviours that warrant a $3 Billion fine. But from this study it seems we are more like him than he is like what we might like to think of ourselves.

GSK’s proposals for transparency need to be read against this background – is the company really offering to do the equivalent of remove their drugs from competition? Or are GSK just a little bit smarter than the competition?

When faced with the growing Fascism in healthcare, we can retreat to the wilder shores of conspiracy theory and claim the problems are down to the Germans, the Jews, or a Socialist cabal. Or we can attribute the problems to some evil people somewhere in pharmaceutical companies who break laws.

But if we accept that the Board of GSK and other companies are populated with people just like you and me, who are perhaps even less likely to break the law than you or I, the $3 Billion fine for GSK notwithstanding, then the problem must stem from and the remedy lie in the system.

(Accounts of what led to the 2017 Amendments to the Food and Drugs Act vary wildly. Some say the President’s first grandson was born with Tetralogy of Fallot linked to his daughter’s antidepressant intake. Conspiracy theories invoked Marilyn’s Curse. They noted things like the coincidence of initials between the unknown American Woman whose baby had a Tetralogy of Fallot and Andrew Witty (See AW and AW2). Others thought it was triggered by the fact that the previous President had to step down early because of cognitive failure linked to treatment with a Statin. Whatever the reason, Andrew Witty was recruited from GSK to become special advisor to the White House on how to change the system. Here is a précis of his option appraisal).

1) Regulation & Science

The licensing of drugs is a bureaucratic procedure that has nothing to do with science. As things stand, this procedure has enough of the appearances of science so that most doctors and patients taking part in it are fooled into thinking they are participating in scientific exercises when they are not.

Regulation is incompatible with science. Science seeks uncertainty, whereas regulation seeks to abolish uncertainty.

That Pharma does regulation not science should have been crystal clear in the legal action taken by Pharma against the EMA (2013), when Pharma took the option to stress that their “data” was simply the result of a regulatory exercise and regulators ordinarily maintain the confidentiality of submissions on products they regulate. This was the winning option.

There were doubts within Pharma about their ability to win using this argument while maintaining the illusion that companies do science. The argument was a bitter blow to the self esteem (amour propre) of FDA and EMA who liked to claim they based their actions on science. But medicine predictably noticed nothing.

2) The 2017 Amendments to the Food & Drugs Act

Regulation needs to be disentangled from science, but this cannot easily be done while the 1962 Amendments to the Food and Drugs Act contain an effectiveness criterion. This was a well-intentioned but unfortunate accident – a simple solution to a complex problem that has made things worse.

In the new regulations to mark the 55^th anniversary of the 1962 regulations the word effectiveness needs to be replaced by phrasing to the effect a drug should have a clear effect on a structure or function of the body. This falls back on language already in the regulations so should not be unduly problematic.

This would have the merit of making it a lot cheaper to develop new drugs. As a result, the cost of drugs would fall, more new drugs would be brought on the market and after marketing a lot of discoveries would be made. We could look forward to a new era of Wonder Drugs to rival the 1950s.

There would be comparatively little clinical trial data and campaigns like BMJ and the Cochrane collaboration to access the data would likely wither on the vine. It would be safe to appoint Peter Doshi and Tom Jefferson as data access Csars.

3) Evidence based Medicine

The determination of treatment effectiveness is critical to the rational practice of therapeutics. It cannot be left to industry; it should not involve industry. If undertaken properly by medicine, as for instance in trials like the Women’s Health Initiative study of HRT or NIH studies of drugs from tolbutamide onwards, it would likely mean that a full appreciation of the risks and scale of the benefits to be obtained from a treatment would only be realized five years after the initial launch of a new compound.

4) Prescription-only Arrangements

Quite simply these need to be dismantled. Anyone who doesn’t understand this doesn’t understand marketing.

If prescription-only privileges are to be retained, only those who do understand the need to abolish them should be involved in any modification. There are a range of possible modifications such as requiring doctors to have a training post in a company marketing department before qualification. There is talk of rewarding them for reporting adverse events – better to penalize them if they do not report them at a certain rate per year.

Another is to maintain certain drugs on prescription-only status such as chemotherapies for cancer where patients are particularly vulnerable and the treatments particularly toxic.

5) Abolish Medicine

Although companies are engaged in exercises that are simply bureaucratic, they have captured the appearances of science, more successfully than alchemists, homeopaths or others, and using these appearances they have been able to infect the body of scientific therapeutics. The insertion of what are essentially sophisticated adverts into the medical literature has triggered a Clinical Auto-Immune Deficiency reaction leading many doctors and scientists to attack those who question the results of ghostwritten articles that purport to represent “studies” whose data is withheld.

Physicians have had decades to find a way to get this cuckoo’s egg out of the nest of science. They could have based clinical practice only on investigations whose data is publicly available. They could have used the Human Rights of their patients as a lever – it is not for instance possible for any doctor to prescribe any branded medicine with informed consent as things stand at present.

But they haven’t done anything like this. The branches of medicine linked to the prescribing of branded products are finished as a profession. They have no brand value. The market has now developed so that nurses, pharmacists, clinical psychologists and others could take over the role of prescribing and will be far less expensive.

If we believe in the market place, abolishing medicine will lead to a solution in that people and governments will realise that they need a set of experts who have brand value when it comes to good quality information on drugs and a new profession will be called into being.

There already was an effort in this respect by a Hungarian emigre to Canada, some ten years ago, to form a First Multinational Corporation of Physicians. This prototype could be dusted down, or another assembled.

Other physicians practicing in areas of medicine where branded products have had little penetration could be allowed to continue. One caveat here is that I have not considered whether areas of medicine that are heavy users of medical devices or medical procedures are as badly affected as mainstream medicine.

A further option might be a promotion of patient co-operatives. Groups like ACOR.org are making a significant difference to healthcare. They might find it far easier to work with nurse and pharmacist prescribers than with doctors.

6) Boycott

One of the few things that might have influenced my behavior as CEO of GSK would have been a boycott. Record fines and even jail time are not deterrents. Almost everyone views these as a cost of doing business already. A jailed CEO might even boost share value.

We in GSK know that boycotts can hurt. The crisis over making ARVs available to South Africa for AIDs and the threat of a boycott was the only time our Board substantially altered its position.

Tied as they usually are to disease indications that don’t exist, and surrogate markers, and produced as they are for bureaucratic purposes only, company efficacy data are frankly close to worthless and are not what companies have been trying to hide anyway. The key data have always been the adverse event data.The boycott would be aimed at getting companies to hand over Adverse Event data.

7) Boycott – 2

In 1962, all of the wrong options from Kefauver’s proposals were picked – the effectiveness criterion, prescription-only arrangements, and controlled trials. The change he most favoured, a revision to the patent arrangements, was rejected.

Modifying patent arrangements is an indirect form of boycott that Congress should consider. Companies need to be rewarded but the current product patents reward then excessively for treatments that often shorten life and increase disability. There are alternate arrangements, such as process patients, that would make the various Panalbas less valuable and put a premium on diversifying the portfolio of compounds companies hold rather than have them dependent on a small number of blockbusters.

8) Access to Data

There are at present thousands or hundreds of thousands of drug trials that remain completely unregistered, where there are no issues of clinical confidentiality. These are studies undertaken in healthy volunteers – normals. There is a compelling cases for ensuring these data are made fully available. Companies will need an amnesty for some of the abuses of people that will come to light as these studies come into view.

9) Independent Adverse Event Reporting

This is the key step. The steps companies have taken to prevent decent reporting, or to denigrate reporting when it happens, and to manage the perception of risk rather than risks themselves, make everything else they have done pale in comparison.

For instance companies supported the development of an FDA MedWatcher App in 2013. Widely applauded, this was in fact a way for companies to reduce the expense of maintaining a pharmacovigilance department, reduce their legal liabilities, and transform adverse events into anecdotes. Companies you see companies have a duty to follow up and decide if their drug caused the problem – FDA don’t have this duty.

But what was astonishing about all this was that pretty well everyone completely bought the idea that when it comes to working out whether a drug has caused a problem, a bureaucrat in FDA who is there because they don’t like meeting patients, has never treated the condition you have and never used the drug you are on, would be better placed than a good team of doctor, pharmacist and informed patient perhaps in touch with other good teams, to work out what’s going on.

If people buy this, who knows; at a push they might even buy the idea the earth is flat.

Unless a patient organization gets involved in assembling real-time data and both doctors and patients combine to put risk mitigation programs in place, none of the other changes will work.

The bottom line is the average drug has at least 100 effects. Using clinical trials we have been hugely successful in hypnotizing doctors and patients to focus on one effect and to miss the other 99. This pharmagnosia is a major driver of Pharmageddon (See Marilyn’s Curse). If the climate change encroaching on healthcare is to be rolled back, we need to manage pharmagnosia.

We can still have a market solution but it needs to be a Comparative Safety market rather than a Comparative Efficacy market.

The post Witty A: Report to the President appeared first on Mad In America.

As way of introduction to these next few blogs, we would like to talk about the misguided approach of looking for a single nutrient that will have profound effects on brain function in isolation from other nutrients. Outside the realm of ‘common knowledge,’ and inside the somewhat rarefied air of academia, there have been many studies on the benefit gained from administering micronutrients to people with mental disorders, but almost all of those studies have been based on the ‘magic bullet model’ of treating with only one nutrient. When Bonnie and her colleagues set out to review the peer-reviewed studies in the scientific literature on the use of vitamins and minerals for the treatment of mood disorders (Kaplan et al., 2007), they found dozens of studies from about 1910 to the present. The range of nutrients studied was surprising: all the B vitamins, vitamins C, D, and E; calcium, chromium, iron, magnesium, zinc, selenium, choline, and more.

But here is the primary message that emerged from that examination of the literature: scientists were not studying nutrition in the way in which humans have evolved to require nutrients – consuming lots of them together and in balance. Studies generally followed what one might call the ‘drug trial model’: give a group of patients a single nutrient and see if their symptoms improve. A second review on nutrients for the treatment of Attention-Deficit/Hyperactivity Disorder (ADHD) revealed the same pattern – most studies on nutrients for the treatment of ADHD have involved one nutrient per study (Rucklidge et al., 2009).

Has the single nutrient approach yielded benefits? Actually, it has — but consistently modest benefits. There are studies showing that calcium supplementation modestly improves mood; that zinc or copper supplementation modestly improves mood and can improve attention; that various B vitamins administered one at a time modestly improve mood. This trend is visible in the present time, when our public funds have continued to support the magic bullet approach. For instance, recent research shows that omega-3s or vitamin D administered in isolation can improve some psychiatric symptoms, sometimes, in some studies. Yet to this day, in spite of the minimal returns from single-nutrient treatments, editorials in esteemed journals occasional promote the latest magic bullet nutrient to treat an illness.

We need to acknowledge that for some physical illnesses, single nutrient treatments can mean a matter of life or death. Scurvy is a great example of this: vitamin C can effectively prevent and also cure it. Prior to this discovery, it was commonplace to have an astounding 40% mortality rate of sailors on long voyages. And to be fair, there are a few examples of single nutrient treatments that have had powerful effects on mental health also. Niacin is a good example: pellagra and its psychosis can be cured with niacin therapy (more on that story in future blogs). Also, vitamin B12 can eradicate pernicious anemia, an illness that often presents with psychiatric symptoms.

But as a society, we seem to have a predisposition to thinking in terms of single ingredient solutions, which may be in part because this is the approach promoted by health professionals and the media. We have begun to see it as a natural product of the Post World War II ‘golden era’ of drug development. You have a systemic infection? Take an antibiotic – a single-ingredient pill. You have post-operative pain? Take a pain-killer – again, usually a single-ingredient pill. You have angina? Take a different, single-ingredient, magic pill. In terms of nutrition, what woman in the Western world, planning on getting pregnant, is unaware of the need to take folic acid to prevent neural tube defects in her offspring? We suspect few.

It has been hammered into us that folic acid is essential for prevention of congenital malformations (even though other B vitamins have also been shown to have at least a contributing effect). But how many midwives and physicians tell expectant mothers that there is also research showing that outcomes for children are potentially far better if the mother takes a broad-based nutrient formula? We have to wonder why this knowledge isn’t filtering through. We think it comes down to our intellectual minds having been trained to expect solutions from a single ingredient. Have drugs played a role in this expectation? We think so, based on the number of times when both of us have been asked, after presenting data on multinutrient treatments: “But… which is the active ingredient?”

The tendency of general society to think about single-substance magic bullets can also be attributed to what is often called The Scientific Method. Experimental science has made great progress in many areas by adhering to the principle that only one variable can be altered at a time, and all other variables must be simultaneously controlled. We are not so foolish as to question the value of the Scientific Method’s isolation of the ‘independent variable’ (IV) – but the question is this: why can’t the IV be complex? A few decades ago, psychologists declared that the IV can, indeed, be complex, and they have led the investigation of multi-variable, usually ‘manualized,’ treatments such as cognitive behavior therapy. The two of us, both trained in psychology, thought this debate was over: clearly there is a place for investigating complex IVs. But as recently as 6 months ago, one of Julia’s manuscripts was rejected by the leading American journal in the area of psychiatry with one reviewer complaining: “…it is impossible to know which among [the nutrients] may be an active ingredient with regard to any positive study findings.” Times have not changed much since one of the most senior psychiatrists in America informed Bonnie in about 2000 that no legitimate scientist would study more than one nutrient at a time.

What’s wrong with this single-nutrient literature? With precious few exceptions, all of it – hundreds of studies and millions of research dollars – has been wrongly based on the idea that a treatment must consist of just one nutrient at a time. The esteemed nutrition researcher Walter Mertz understood the fallacy in this way of thinking. Twenty years ago he declared that all of the single-nutrient diseases had likely been defined, and that all future discoveries of health-related nutrition would consist of complex nutrient formulas. Yet only in the last decade or so have studies of broad spectrum or complex nutrient treatments been carried out. And compared to the single nutrient research, this literature is sparse even though it makes physiological sense for nutrients to be most effective in combination. We hope our next blogs will convince you that broad based nutrient supplementation is the most logical way forward for the treatment of complex illness expressed in the various forms of dysregulated mood, obsessions, impulsivity, hallucinations, and scattered attention, to name a few. It seems outrageous to think that one nutrient could effectively resolve these constellations of symptoms.

Further reading, if you are interested:

Kaplan BJ, Crawford SG, Field CJ, Simpson JSA (2007). Vitamins, minerals, and mood. Psychological Bulletin, 133(5), 747-760.

Mertz, W. (1994). A balanced approach to nutrition for health: The need for biologically essential minerals and vitamins. Journal of the American Dietetic Association, 94, 1259–1262.

Rucklidge JJ, Johnstone J, Kaplan BJ. (2009). Nutrient supplementation approaches in the treatment of ADHD. Expert Review of Neurotherapeutics, 9, 461-76.

The post The Inane Search for Magic Bullets to Treat Mental Illness appeared first on Mad In America.

The only analogy I’ve been able to come up with, after pondering these matters for a while, is that it was like contracting a cold bug or virus that first announces its arrival with a fever. When the fever initially takes hold, it’s readily apparent that you’re coming down with something: You alternate between feeling too hot and too cold, you shake, you ache, your head pounds, and you’re a dizzy, sweaty, groaning wretch. You are unequivocally ill and must take to your bed and rest. But then after a day or two, the more acute symptoms subside — you’re no longer running a temperature of 101 or 102 — though you’re still febrile. You’re just not sure how febrile: 100.5 degrees? 100? 99.7? Finally, you can get up and potter around and maybe do some light chores, but you still know you’re unwell, just not to what degree.

The only thing that’s clear is that you’re not 100 percent yourself.

This might go on for a while, five or seven days, say, of low energy, breathlessness, malaise, and vague, hard-to-pinpoint discomfort, but at least you’re functional, albeit to a lesser degree. But even this diminution of function can be hard to recognize, mired as you are in a long string of days filled only with suffering, with normalcy so long gone you can recall only that “it probably doesn’t feel like this.”

Only when the fever disappears for good, when you wake up one magical morning and feel 100 percent like yourself again, do you realize that it’s over. By comparison, the return of everyday good health feels like euphoria or almost like you’ve been given superpowers, and only in the contrast do you realize how low you’d been brought.

Anyway, that’s the best metaphor I can come up with, though I’m sure there are others. For me, the earliest months off the meds were the high, spiking fever, while the months and years that followed were the low-grade malaise during which I knew I was “better,” in that I could function (well enough), but I was also not sure how much better or how much farther it was to the finish line, because I still experienced constant washout symptoms like fatigue, insomnia, anxiety, emotional lability, fuzzy cognition, physical weakness, and depression. It was a muddy, gray, seemingly unending, and often-dismal period during which the best barometer of healing was feedback from family and friends, who could better see the changes in me over time, having the advantage of separation from the immediate torment.

I remember well, in 2009, my friend and rock-climbing partner Ted remarking on how much faster I could hike to the cliffs, versus a year earlier, and how this surprised me because I thought I’d been hiking the same pace all along!

Anyway, this is all very easy to write about with the benefit of hindsight and a return to reliable health (90 or 95 percent of my old self), and I realize it was not always this way and that I’m very fortunate to have the nightmare behind me. Not everyone reading these words is in that position, I realize; or perhaps you are the friend or family member of someone not yet out of the woods. For many months and years I ran a “fever of 100.5,” and that was maybe the most desperate period of all, both because it went on for so long but also because it was so impossible to know how long that so long was going to be.

So really, the question “How did you know when you were better?” is perhaps best rephrased as “How, while you were still sick, did you know you would eventually get better?” This is the most pressing matter for those still healing from the harm caused by psychiatric drugging, because they are living within the process.

We all heal differently, with our own individual milestones. For me, the point at which I knew I would eventually get better — that the fever would someday break — came in 2006, year one, during which I was still very ill and often hopeless about the ruination that had become my life. The drugs, hospitalizations, and diagnoses had taken so much away, for so long, and I didn’t know if I had the simple physical strength to continue. My morale was likewise a tattered old battle flag: I continued to feel, as I had through all of my ordeal, that I was no longer the master of my own destiny — that, even though I’d finally escaped the unsympathetic, authoritarian grip of the psychiatrists and their Pine Sol–stinking wards, I was still too physically and emotionally compromised to influence the outcome of my decisions, even if I was finally free to make them again.

That is, I remained so cowed (screw it: traumatized) by my experience and so reduced by pain and fear that I had trouble navigating the world: speaking up for myself, dealing with difficult people, forming coherent thoughts and opinions that were discernably my own, making plans for the future, and so on. I did not feel adequately self-sufficient. I did not know where the world began and where I ended.

Then, all that changed. Let me explain.

In the sport of rock climbing, which I have been practicing since age fifteen, you have two climbers: the lead climber and the follower. The lead climber goes first, belayed by the follower (aka “second”), who uses a metal belay device to secure the rope, paying out slack as the leader climbs and locking up the device in a fall. As the lead climber moves up, she clips the rope into protection points to safeguard these falls. In a lead fall, you generally fall twice the distance you are above your last protection point plus a few extra feet for rope stretch (dynamic climbing ropes elongate under load, to disperse force); if you’re ten feet above your last protection point, you might drop twenty-three feet before the belay stops you.

Lead climbing is thus much more committing than “seconding,” where if you fall, belayed from above by the leader, you’ll remain hanging almost exactly in place. In a lead fall, it’s really isn’t the falling that’s dangerous, but the stopping, especially with obstacles like ledges, blocks, and sharp arêtes of rock below.

Lead protection, meanwhile, come in two forms: fixed and self-placed. Fixed protection comprises pitons (the “spikes”) that climbers once hammered into the rock in bygone days, as well as expansion bolts screwed into holes drilled in the rock, placed by the first climber to “open” the route. If a route has entirely fixed protection, then the way ahead is clear and the commitment level is low.

You need be neither entirely self-sufficient nor confident in your route-finding skills: you’re essentially “connecting the dots” between pre-existing protection points.

With self-placed protection, so-called “traditional climbing,” the leader places removable protection in natural cracks, seams, and holes, protection the second then removes when he follows the pitch. The leader will carry a “rack” of metal protection, often weighing many pounds, and must like a chess player plotting multiple moves in advance scan ahead for protection options. So many overlapping factors come into play on a traditional lead, from a need to mete out protection in equidistant intervals, to avoid over-long falls; to finding stances, often on strenuous terrain, to place the protection; to sizing the protection correctly; to making sure you’ve placed the protection in reliable rock; to making the good decisions that keep you “on route,” from straying into unprotectable terrain.

It is much more of a head game and requires expertise, calm, and total self-sufficiency.

At my sickest, I’d for many months put climbing and most other athletic pursuits on a back burner. I had just enough strength to do therapeutic yoga, walk a bit, visit the bouldering gym where I could do easy moves near the ground, without ropes, and lift light dumbbells at home, but that was about it. The few times I tried to climb outside, it felt both too taxing physically and too stimulating mentally. It’s hard to explain, but in the acute withdrawal state (the main culprit was benzodiazepines), I was too jacked up and divorced from reality for anything that stimulated my nervous system, because then I’d feel even worse. The screen of my vision was too bright and fuzzy, I swayed to and fro with mal de debarquement, my hands and feet tingled, I had a fierce electrical current running along my spine and into my gut that fueled a constant internal tremor, and my thoughts were rushing, repetitive, doom saturated, and self-castigating.

There was no peace.

Finally, one day in 2006, I’d had enough: I needed to prove to myself that I was more than just one big ball of suffering. And so I asked a trusted friend, Majka, who knew what I was going through and who also happens to be a mountain guide, if she would lead me up some easy rock climbs in Eldorado Canyon, south of our hometown of Boulder, Colorado. Eldorado is an elemental place, split by a roaring creek that spills over mammoth brown and red boulders, the steep-sided canyon walls above beetling with vibrant red and green buttresses, ramparts, ridges, and minarets towering up to eight hundred feet high. Ponderosa pines and talus fields spread upward from the canyon mouth, fanning into a great hanging basin beyond and then, eventually, the high Rockies.

I can’t recall which climbs we did that day, but I do remember that with Majka in the lead I felt safe, and that we kept things mellow and never climbed high off the ground. I moved slowly, lethargically, seconding her leads, rarely looking down, conserving my meager stores of energy and trying not to let my heart rate get too high or breathing become too rapid, so that my nervous system stayed calm. It was a bright, windless day, swifts and cliff swallows darting about in the ether and the belay commands of other climbers the only sounds audible over the crashing of the creek.

Finally, near day’s end, having done OK thus far, I told Majka I wanted to try a traditional (self-placed protection) lead, to see if I were still capable even in my hellish state. Without so much as a tic or a clearing of the throat, Majka said, “Cool, let’s do it!” She still believed in me, even if I wasn’t so sure myself. I could have easily seconded her up another climb, but it seemed important not to take the easy out. It had been at least a year since I’d done any lead climbing, but perhaps if I chose a route well below my technical abilities, I would be able to push through the fear and confusion, and sort out the things like route-finding and protection that needed sorting out.

The route we did that evening was called Breezy, given a technical rating of 5.5, meaning it’s less than vertical and covered in ample hand- and footholds, ledges, and incut “bucket” holds the size of toasters — a route any novice could do. My first-ever rock climb was a 5.5, so here I was back to square one, but now I was going to make myself lead it! A traditional climb, Breezy climbs a wide crack and broken arête up a spire called the Wind Tower, at the canyon mouth.

It’s hard to recall the specifics (and blow-by-blow descriptions of climbing are like watching paint dry), but I do remember that I made it. I started off slowly, feeling vulnerable and naked and exposed and half-panicked as I moved higher off the ground: five feet, then ten, then twenty, picking my way up the dark cleft, sliding my feet up one wall, my back up the other, the rope dropping like an umbilical cord to Majka. It felt like swimming against a strong ocean current, but still I persisted. I dithered for a while slotting in the first piece of protection, not trusting the rock, myself, or my “feel” for sizing the gear, knowing that if I blew it, it would be a long, ugly fall to the ground.

Then something clicked. I had been doing this for twenty years, and instinct and muscle memory took over. I even started to have what might pass for “fun” for someone in med withdrawal, moving more naturally and shouting a joking word or two down to Majka, who belayed patiently off a flat patch of ground in the gully below.

Here I was on the rock again, making my own decisions and guiding the outcome. If I wanted to make it to the top safe and sound, then I needed to take the correct route, place my protection correctly, clip the right length of nylon runner between the protection and the rope for smooth ropework, and select which hand or foot I would move up next so as to execute each move in a stable fashion. No one could tell me what to do up there, up off the ground in my own little world. And no one could help either if I got stuck — at least, not immediately.

Every last decision was my own, and I took full ownership.

For those thirty minutes it took to reach the big ledge atop Breezy, I was free. My body still hurt, my muscles still burned, I still felt the ever-simmering brew of chemically induced terror that had become my constant companion, and I was dizzy and thinking slowly, but I was free.

Autonomous.

Self-sufficient.

My own person.

And that’s when I knew: If I can be free this once, I will be free again. I realized that the next time I broke free I would feel a little stronger, and then stronger again the time after that, and so on, until eventually it was over, until the fever had broken.

Little victories: That’s how I knew I was going to get better. Whether you’re a climber or not doesn’t matter. Perhaps you have some other passion you can try again, even in baby steps, to measure progress and see that your core, integral self is still intact. Or perhaps it’s just that first time you drive to the grocery store alone or walk around the block or meet friends for dinner.

You make your decision and you work to influence the outcome. You do something for the “first time again” that you were previously unable to do.

You earn a little victory.

This is how life is lived. This is how you know you’re on the road to getting better. This is how you know it will eventually end, whatever ups and downs may come. This is the face of healing.

Matt Samet, a freelance writer and editor in Colorado, maintains a Facebook page and has detailed his story in a memoir, Death Grip, available from St. Martin’s Press.

The post Threshold appeared first on Mad In America.

I am sure by diagnostic standards, my “mental illness” started when I was a child.  And it was no better in my teens.  Visions of self-mutilation and emotional torture started when I was twelve, and I am now in my thirties. Unimaginably beautiful feelings and powerful connections with the world and with people came along shortly thereafter.  The first few years with those experiences were incredibly painful.

I fought with my parents incessantly, and I believe to this day that they deserved a great deal of it.  I ran away from home, and I would be briefly happy.  I drank, I smoked, and I experimented with drugs, and those things were relatively meaningless to me and still are.  I dropped out of school in eighth grade despite having above average intelligence and an incredible curiosity.  And I was living on my own and struggling to put my life together in some sensible way by the time I was old enough to drive a car.   I was a survivor.

I always found my way through the pleasures and pains of those experiences and came out more self-aware and determined in the process.  I always had a strong drive to make the next day better.  While I occasionally gave into passion or anger, it usually made sense in the context and rarely caused any major disturbance in my life.  If I quit a job, I had another one right away.  If I destroyed a relationship, the jerk usually had it coming for destroying my trust.  I certainly could turn on a whim, but there was usually some precipitating factor.  For the most part, I lived in harmony with my emotional states.  I learned to make connections between my feelings and things that happened to me in the past, which allowed me to appreciate my emotional states without allowing them to rip me to shreds.  It was a process that was arduous, and I certainly understand why someone may choose a different route.

In all honestly, I thought I had psychological problems when I was a teenager.  It certainly would not have come as a shock to me if I had been asked to take medication at that time.  I remember sitting at the dining room table in my parents’ house crying and telling them that I could not take it anymore.  My mother never believed in therapy, and she told me it was all in my head.  In retrospect, I think she had more insight there than I gave her credit for because I believe in emotional reactions to life experiences, and I believe it is possible to work through those reactions with fierce dedication.  While I have a lot of anger and a lot of animosity toward my family, I am thankful that I never saw a psychiatrist when I was younger and did not take medication until much later in my life.  I might have avoided a lot of pain, but all of that pain made me the resilient and genuinely empathetic person I am today.

When I was in my twenties I endured some traumatic events, including the demise of a serious relationship with a partner I had been living with and had loved dearly.  I cheated on him and accept responsibility for that, but he hurt me deeply, and my brain just reacts to negativity with negativity sometimes.  Reacting negatively is something that I have worked on quite a bit over the years.

The brief and intense affair turned into an equally brief and intense marriage to someone who, while being an incredibly intelligent and kind person, simply was not right for me.  It was during that three-year marriage that I began hearing voices and thinking I could hear other people’s thoughts.

At the time, I thought I was insane and that everyone knew it.  Walking around the mall was the most excruciating event because I felt like I was plastic and that people didn’t see me the way I saw myself.  I felt detached from my body and subhuman and thought every single person was staring at me.   I was probably disheveled and scared, and it would not be a surprise if people were actually staring at me.  I no longer appreciated dissociative experiences; I was terrified of them.  The voices were telling me to kill myself, and I was starting to agree that it might be the best option.  I was working as a legal assistant at the time, and I dreaded picking up the telephone at work because the voices would tell me that the client knew I was crazy.  I began missing days of sleep and was so sensitive to light that even the light from a computer monitor in an otherwise dark house caused me pain.  I started to panic so badly and so often that I refused to go anywhere I did not have to go and started disconnecting from life as I knew it.

By the time I saw my first psychiatrist, I would have agreed to anything to just shut my brain down.  That first experience was not a pleasant one.  The doctor did not ask me how I felt or what happened to me, but rather, gave me a lengthy assessment followed by what I would consider a mental interrogation.  I had to push through this while feeling like my cells were going to explode out of my body into an atom pile at the doctor’s feet.  I remember a few questions from my initial visit, which had to do with feeling hopeless, sleep patterns, and illicit drug use.  But I will never forget the doctor asking if I had a history of schizophrenia in my family.  I told her I did not know.  Then she rephrased the question.  I may have been losing my mind, but I knew she would not be asking that unless she thought I was schizophrenic.  I was terrified.  And I was terrified because I had been taught to be terrified by the media and by my psychology professors.  The doctor handed me a prescription toward the end of that appointment.  I asked what the prescription was for, and in a rather matter-of-fact way, she stated “Amanda, you have schizoaffective disorder, and you will have to take medication for the rest of your life.” I lost control.  And for the first time in my life, I had no hope for my future.

I do not recall that doctor asking me about my marriage, about trauma, or whether I had recently taken any psychiatrics medications.  In my mental state and in the interest of being a good patient, I would not have thought to tell her anything she did not ask.  She was the expert.  I had, in fact, recently taken Wellbutrin on the advice of my family doctor for smoking cessation.  It was discontinued because I began having impulses to jerk my steering wheel and cause my car to go off the road.  I was also confused about my marriage and mourning the closing of a cherished chapter in my life.  I cannot say for certain which of those things caused my breakdown or whether they all worked together in some way, but I can say I had a lot to talk about and nobody asked the right questions.

I struggled with various medications for about two years after that initial visit.  I tried over twenty of them in that short time.  I probably tried half as many psychiatrists, as well.  I had a new label and new pill with every mood change or unusual sensation.  Some of the pills made my thoughts, urges, and altered states significantly worse.  Some of them gave me terrible side effects.  And some of them did not seem to do a thing.  I reached a point where I hated psychiatrists, and I trusted no one.  During those two years, things would get better for a time, and then they would be worse than ever.  I would panic for days and think people were trying to poison me.  The surreal feelings would come back, and I would feel like a clay character in a human movie.  The only thing that assured me I was still real was physical pain.  I started looking for a way out, which ultimately resulted in two psychiatric hospitalizations.  I barely remember the first one because I was on the upside of down and having a great time.  It was also a very brief stay.  My second hospitalization was life changing, in part because of the events leading up to it.

My mind had been racing for days.  I wanted everything and nothing.  I could not sit still.  I could not focus for more than thirty seconds.  I was not caring for myself.  I was a mess.  I had been on several different medications in a matter of months, and the most recent had been especially difficult for me.  One day all of this was particularly bad, and I was afraid of myself.  It felt like lightening was gathering in my wrists and would shoot out of my hands at any moment.  I handcuffed myself to my bed in an effort to save me from myself.  I laid there twisting, jerking, crying and trying desperately to fight the fleeting thoughts and sensations of electric shocks in my back and legs.

After a couple hours of that hell, I got loose, and I cut and burned myself and then overdosed on the several bottles of psychiatric medications that had accumulated in my medicine cabinet.  A lot of incredibly humiliating and traumatizing events transpired as a result of those actions, not the least of which involved some type of medication that causes you to defecate uncontrollably before your brain has time to signal your body to stand up and bolt toward the bathroom.  For someone who is distrustful and in a constant state of self-preservation, waking up in an emergency room with a locked restraint cuff on my arm was especially horrifying.  Yet, there I was at mercy of the person that the sign on the wall referred to as my “babysitter.”  That was not the last time that day I would feel extremely vulnerable – later that evening I had the misfortune of being transferred to inpatient psychiatry, in handcuffs, by two police officers.

Being committed is a distressing and overwhelming process.  Three or four staff members gathered around and looked at me in a menacing way while one of them explained every detail of being a mental patient in less than half an hour.  A nurse sat behind an oversized desk with a packet of papers about an inch thick.  A male staff member sat on each side of me and at least one other lingered in the doorway.  The nurse informed me of my rights as a patient, where my belongings would be stored, and what it meant for me to be involuntarily committed.  They also explained to me that I would was on a suicide watch and that someone would follow me and have to keep an eye on me at all times, which included while using the bathroom and showering.  Someone was nice enough to bring me a lot of food, and I am still grateful for that. Then I just signed whatever they put in front of me, and I decided to deal with the consequences later because I was exhausted and defeated in so many ways.  Again, I was told I was sick with a mood disorder, would have to take medication for the rest of my life, and that if I did not comply this time, I would not get to go home.   I reluctantly started a new medication there, and I did indeed get better.

I took that medication dutifully for over three years, and during that time I finished college summa cum laude, I remarried, and I began working as an apprentice to an attorney.  I am sure the medication helped me control my emotions so I could focus on those things.  But it also prevented me from being able to feel what I needed to feel to truly heal.  It was like all of my awful life experience was in a tiny padlocked box in my mind, and I could see it every day, but I could not open it and examine its contents.  Side effects eventually became unmanageable, and I switched to a different medication, which I also dutifully consumed until June 7, 2012, when I decided that, for better or worse, I wanted to feel something again.

I came off medications slowly and carefully with the support of my doctor.  It was painful.  Some days I felt gorgeous and amazing and others I felt mentally and physically disgusting.  Some days I thought my husband was putting lithium in my food and others I was certain people were talking about me when they probably were not.  After about three months, things got better, calmer, and almost annoyingly normal.  That is no longer the case.  Who I am at my deepest emotional level came back very slowly at first.  It was like flashes of photographs on an old projector.  It was a split-second thought reminding me of how beautiful and mysterious the world once seemed to me.  Now it comes in waves.  Sometimes they gently flow around me, and other times they topple on my head and push me to the ground and make me want to take my medication.

I am once again learning to be thankful for every experience whether dark, exciting, or humiliating.  For years I feared myself and felt morally wrong for everything I ever was, which in actuality, is a most complex person who is incredibly insightful and capable of navigating the horrors and highs of life with brilliant resiliency.

I will never forget that many well-meaning people in my life told me there was “something wrong with” me.  I will not forget my kind and gentle boss in the law office suggesting I leave work to “see a doctor” when all I wanted was to be left alone because I was ashamed of my voices and ashamed of my fear.  I now see voices, moods, and fear as a necessary and valuable part of my psyche.  It makes sense that I learned to hide my experiences and to panic in public because I had been conditioned to believe that there was something fundamentally wrong with me.  Fear and shame are often unintentional, yet programmed, parts of the mental health system in America.

I believe deeply that fear and shame are dominating factors in many of our lives, often because others have ingrained those feelings in us.  I know that is true for my life.  I do still have fears.  I fear loss, I fear regret, I fear unknowns, and I do indeed fear my own thoughts sometimes.  There are times that I feel overwhelmingly awful for thoughts I cannot avoid, minimize, or repress.  And I want to hide inside myself for eternity.  I fear myself because, like so many other patients, I have been taught to fear myself.

I have been fortunate to learn that, while I may very well be unable to control my thoughts, I am able to control my behavior with maturing precision.  It is in the moment between having the thought and desperately attempting to deliberately choose my course of action, that I inevitably realize there is some deeply buried meaning underneath the thought I am so vehemently resisting.  The nurturing of those meanings whether they surface gently or fiercely erupt shapes my personality and often for the better.

I cherish my capacity to have a profound appreciation for my thoughts and feelings despite the torment that sometimes comes with them.  It is in those thoughts and feelings that I have evolved and will continue to evolve.  If I were to conceal my thoughts and feelings from my consciousness, I would never understand and appreciate myself, and I would never feel safe in the world.  I am grateful for intensity, for passion, for anger, and for fear, for reminding me every day how fascinating it is to be a human being even when it terrifies me.

I am often asked what recovery means to me.  In essence, it means appreciating my thoughts for what they are: my thoughts.  Sometimes the thoughts come from some place in me that I have forgotten, and sometimes they are trying to tell me something I do not want to hear.  But they are nothing more than thoughts until I assign them meaning or choose to see them through.  I do still think in ways that might be considered bizarre, but I am keenly aware of it, and I am in control.  I believe that I would never truly heal from my trauma and my emotional states without self-reflection and the ability and opportunity to make connections between my thoughts and sensations and things that have happened to me in my life.  I no longer believe that my thoughts make me dangerous or horrible or ugly.

They make me human.

The post Recovering Myself appeared first on Mad In America.

 Let it loose; it will defend itself. 

- St Augustine

The Hearing Voices movement is a beautiful thing, and last year it was 25 years old. What has happened in 25 years? A confidence has grown in a different approach to hearing voices, listening and embracing rather than trying to control and silence voices. Key to this has been Hearing Voices groups and conferences, where people who hear voices are listened to with openness and curiosity. It’s not about telling people who hear voices to throw away their pills if they are taking them, its about creating spaces to listen deeply to what is happening.

In the highly recommended book Living with voices: 50 stories of Recovery (by Marius Romme et al), some people find medication helpful in managing their experiences. But everyone in the book talks about being listened to as helping them and in many cases learning to listen to the meanings of their voices.  Hearing voices gatherings are liberating spaces because they welcome different understandings of the world and of the mind.

At events like the gathering in Cardiff in September last year to celebrate  25 years of the world hearing voices movement, I always meet a whole range of perspectives about voice hearing, including spiritual, psychological and clinical ideas. Its a wonderful mixing pot. I always get inspired and come away with new ideas. The new film “Voices Matter“ gives an insight into the dynamism of this event.

Hearing Voices conferences always hold the wisdom of personal stories of voice hearing as equally important to learn from as are academic and therapeutic knowledge.  This is still going against the grain of Western conferences (relating to the mind) where personal reflection of any kind is still a rare thing.  Rachel Waddingham (featured in the film) is creating spaces in London for children and young people to learn how to live with voices and flourish.  Using creativity and media the Voice Collective project she manages is about finding ways to demystify voice hearing and show that it can be understood and managed.

This work was inspired by the work of Sandra Escher who found that it’s really important for children and their parents to learn from what the voices say and what they are like.  Sandra Escher and Marius Romme (also in the film) have done lots of research showing that if you pay attention to the characteristics of the voices (e.g. how old they sound and their gender, the age they started, the content of what they say and what triggers them), this empowers people to realise what are the emotional conflicts and meanings the voices may relate to.

In my experience using this approach, very often the voices can clearly guide us to truths that have been ignored or buried. In contrast the dominant approach in mental health services is to ignore the content of the voices either seeing it as biological illness or as imaginary and nonsensical.  When parts of us get listened to this allows us to feel relief. We can see voices as parts of our minds and of our experiences of the world.  Even if we see voices as spiritual we can still see voices as messengers about what we need to strengthen in ourselves and understand better.   Understanding voices work seems to lend itself to group and family meetings as well as one to one style meetings. In a way if someone is hearing voices it is a message to the whole community that something has happened that needs to be listened to.

The film features a debate about cognitive behavioural therapy (CBT) and the Hearing Voices movement’s approach. CBT is recommended as a talking therapy by government policies. The Hearing Voices movement has always sought allies, but there are some glaring differences in their respective approaches. The Hearing Voices movement sees itself as a social movement trying to educate society to accept and respect voice hearing rather than see it as caused by a disease. CBT practitioners might be sympathetic to this but generally conduct research that uses quite medical language (e.g. auditory halucinations, source monitoring errors), implying the content of voices is meaningless and caused by illness or deficits.  In contrast I would see voice hearing as one of the mind’s ways of creatively responding to confusing experiences.  Often CBT tries to reduce voice hearing and control it without really trying to understand it. In the Hearing Voices movement many facilitators of groups and trainers have personal experience of voice hearing and use this to inspire hope and convey the meaningfulness of their experiences. CBT therapists who are open about their own experience of voice hearing are about as rare as hen’s teeth.  While I am sure that really helpful conversations happen under the title of CBT its important to debate how it is often used to try and change people’s thoughts rather than listen creatively to people’s experiences.  I hope that we can dialogue with CBT psychologists so that they can move to a more accepting approach towards voice hearing and the possibility of listening to both the voice hearer and the voices themselves.

I wrote this poem a few years ago when I was in a debate with lots of CBT professors/therapists  at a CBT conference. I knew I could not win so I performed this as a rap. I think it conveys how when we professionalise help giving we can lose the creativity and accessibility of more down to earth approaches rooted in self help principles:

CBT for Psychosis: Keeping it Real!

I was asked to discuss the future of CBT for psychosis
Its spreading across the country like Mixamatosis…
But unfortunately it’s far too professional.
It uses clinical jargon making it so medical.
Clinical terminology has quite a negative effect you see
Words like symptoms, interventions, relapse prevention and abnormality
Is the language of deficit and illness, it makes us want to feel less
and so we wait for the pills to work and give up responsibility.
Clinical language (pushes an ideology that) puts the therapist on a pedestal and promotes passivity.
What we need is not language that smacks of technology
We want the language of experience that says it so respectfully.

Recently I met the mother of a son with paranoid thoughts
Scared of going into hospital, he ran away to not get caught
He was found in a disused building, dying of exposure.
“What would have helped the most?” I decided to ask his mother. “
To meet other people who were making a recovery”
If you’ve been in hospital, stories of hope are quite a discovery!
At a public meeting called Evolving Minds she made this observation
Here people are seen as people not carers, staff and patients.

I would like more cooperation between CBT and Self-help movements
But where CBT is thriving, Self-help groups are not started
Birmingham is a good example of this, perhaps we should ask Max Birchwood.
Why is it in a region that has focussed so much on services for psychosis
Hearing voices self help groups are as rare as reindeer with red noses?
Is it implicit in CBT to maintain the (expertise) ‘them and us’ divide?
Or can it become more emancipatory? this is what we must decide.

In the final pages of Richard Bentall’s book ‘Madness Explained’
He suggests the way forward may have to be changed.
Liberation rather than cure could be the answer
Following in the footsteps of Marious Romme and Sandra Escher:
The International Hearing Voices Network is another global epidemic,
Where ‘experts by experience’ are seen as important as academics.
Yet at CBT events, professorial monologues still tend to dominate.
We need a different kind of dialogue that I think will stimulate
A broader type of thinking and a broader range of people
If that was the case then I’m sure that such conferences would be full
Of a diverse range of citizens
Who would be given the ammunitions
To really develop communities of healing hope and democracy.

As John Read has shown us we need to go to the roots
Of people’s suffering, if we don’t ever, we are in cahoots
With the notion that psychosis is an arbitrary biological illness.
When in fact it is a meaningful subconscious expression that can guide the way to wellness!
But while chemical cosh prescribing practice continues to promote suppression,
We should work with holistic therapies to help avoid the oppression
Of tardive dyskinesia, weight gain and akasthesia
The blocking of affection and empathy, enthusiasm and creativity.
But with mindfulness, yoga and tai chi
People can naturally balance their energy
So CBT needs to think more openly
Acknowledge that there is no one right way to see
And that spiritual and emotional wisdom can sometimes be
More important than biomedicine and psychology.
Remember delusions are in the beholders eye
And thought manipulation is difficult to justify.
You must go very carefully
With techniques that push rationality.
Because it is only one world view
And the person on the receiving end may not thank you.

When we work with people’s voices
We should give them real choices.
One technique is to help the person communicate
With the voices that tend to dominate.
With voice dialogue using chairs we can open up a conversation
And the voice hearer and voices get some mediation.
So my last word is creativity holds the key
Listen to your heart as well as your head
And together we can demand more than just CBT!

The Hearing Voices movement promotes trying to learn from the experience. Its not about trying to get rid of voices, it’s about helping people change their relationship with their voices. When this happens voices may stick around and become companions or they may go away.

One workshop I went to in Cardiff was about coping with not hearing voices. Anders Schakow (also in the film) described how, now that he no longer heard voices, it was just as important for him to understand the different parts of himself (and how they interact with others). This is a premise in Hal and Sidra Stone’s Voice dialogue approach, that we all have different sub-personalities or energies that we need to listen to and negotiate with. In a way we all have to learn to live with our many voices.

Thanks to the Open Paradigm Project for making this lively film about the 25th anniversary Hearing Voices Congress. It’s well worth watching.

For more information about the Hearing Voices movement please see the Intervoice Website.

The post Truth is Like a Lion:
The 25^th Hearing Voices Conference appeared first on Mad In America.

“Well, Faith, what do you want to do?”

                                                 “I want to help save the world.”

Notes are made on a chart,

“So, you’ve been experiencing grandiosity?”

                                                 “No. I want to help save the world.”

I.

From a fairly young age, I have wanted to be a revolutionary of some sort. I don’t know precisely why the idea of being an agent of change has always been so appealing to me. I think sometimes that it comes down to the simple fact that I can’t easily lie to myself about the things that I can’t seem to stop hoping for in the world, or the things that cause me to feel sad and frustrated, frightened and angry.  Other times, I credit my revolutionary spirit to my early exposure to good literature and the liner notes of punk rock albums. Regardless of the reasons, I have been deeply drawn to activism for a long time.  I don’t think I am unique in this inclination toward revolutionary occupation, nor do I think that I am particularly “radical,” all things considered.

I am relatively new to the psychiatric human rights movement, but I am not new to initiatives toward service and change. I’ve made huge pots of stew and sloshed them across damp parks, happy to eat with people who became my friends. For a period of time, I spent my Saturday nights writing meticulous and impassioned court reports advocating for kids in state custody. However, more and more, I have begun to realize that I am not satisfied merely helping to address the effects of injustice in policy and culture. I want to change the forces that cause social, economic and cultural disempowerment, to address the systems that seem to have structured our lives in ways that are so fraught with exploitation and varying degrees of oppression.

I want to help to create a world that I feel better about living in.

II.

Because of the way I tend to think about things, I cannot separate psychiatric human rights from human rights in general…the right to live in freedom from fear, the right to shelter and safety from persecution, the right to meaningful occupation and the pursuit of knowledge…the right to be human and to know what that means to us as individuals, the right to not be harmed because of who we are.

To me, it is all connected. The ways we conceptualize being human are very heavily influenced by psychiatry and the traditional industries of authority and cooperative compliance. Therefore, it seems like in order for people to have the potential to re-frame their purpose and motivations toward more sustainable and positive participation in the world it is necessary to identify barriers to the realization and empowerment of collective human potential.

Often, people want to help. They want to see things change. However, the structures of life, activity and worldview can create barriers to engaging in sustainable activism. The television schedule itself can be grueling, not to mention work, children, and shopping.

“There is just so much to do!”

Trying to figure out how to make sense of the knot of grief/fear/anger/worry in the pit of one’s stomach is not easy to do, because at a certain point of facing the truth of one’s heart it becomes necessary to question the integrity and viability of constructed reality. The culture of misinformation has led many people to be oblivious to the fact that there is a problem or to be terribly confused about what that problem may be.

“Do I love my job?”

“Do I trust the government?”

“Do I want to imagine what the world will be like in 25 years or should I try not to think too much about it?”

“What am I giving up and why am I giving it up?”

These are the sort of questions that can cause the world as we know it to slip a little, to cause a rift in which a tiny seed of dissonance begins to unfurl.

“How can I go on living like this? How can I not live like this? What am I doing? What has happened to the world?”

It is no wonder that people go to such lengths to distract themselves, to numb themselves, to try so hard to find comfort and to find safety.

These tendencies can dissuade us from activism, can exhaust and confuse us. Seeing the world from the perspective of an activist (any sort of activist) requires that we see the world differently than perhaps we had before. The shift from feeling helpless and overwhelmed to feeling empowered with strategic clarity and coherent understanding of the forces at work within our lives is nothing short of a transformative re-orientation of consciousness.

Such things are not for the faint of heart. It takes enormous bravery to imagine a different world, a different life. When we see the world differently we move about in it differently, communicating with new words, seeing new relationships, beginning to grasp the impact that our interactions with person and resource have on the outcome of a day, a week, a life, the world. We make different choices.

What are the barriers to change?  For many people existing in the current cultural and economic context, it is a privilege to even have the opportunity to re-imagine our place in the world and the possibilities we are capable of creating.

At some point, most people deeply and sincerely want to make some great and sweeping difference. In childhood, this often takes the form of imagined super-heroics with awesome powers and stealth identity. Some people probably remember the feeling of nighttime at the kitchen table, writing a letter that the teacher assigned you to write and suddenly hoping that the president will read your words and, noticing how carefully you spaced your lines, decide to stop the wars and save the oceans.

At what point in the process of human psychosocial development do we stop believing that it is possible to change the world?

What happens to those of us who cannot and/or will not stop believing it is possible to change the world?

III.

After my last transformative undoing and re-seaming, I had to seriously reckon with what I needed in order to feel truly alive, what I needed to be happy, to feel like myself. The nature of my reckoning (which some would call “psychosis”) involved months of complex vocational inspiration, meaning that I spent a lot of time trying to figure out, through a process of logical deduction, why I felt fated to contribute to the world’s salvation in some way. I believed that if I didn’t contribute to some effort to create meaningful change in the world that I would not be able to live with myself, that something important within me would – in fact – die.

My inclination to work toward justice and reparation was, predictably enough, deemed to be a product of “imbalanced chemicals” and I was encouraged to cease and desist in my pondering the mechanics of multi-systemic revolution and to focus on my life. It did not seem to occur to anyone that perhaps being inspired to change the world was just a part of who I am and that I was focusing on my life, trying to figure out.

The clinicians and psychiatrists didn’t seem to understand why it mattered so much to me that polar bears will likely be extinct by the time my children are the age I am now. No one saw much worth in my renewed sense of clarified purpose and potential, my newly deep appreciation for the human capacity for goodness and sense.  They encouraged me to find a job, any job. They told me to be sure to rest, to swallow my pills as prescribed and to learn to practice acceptance. To them, it wasn’t a shift in consciousness or the creation of a new worldview. It was all “a part of the illness.”

“Focus on your children,” they told me. “People have always wanted to save the world, Faith. It’s always been this way. You just have to accept it and live your life the best you can. Do you need a refill?”

In a lot of ways, my decision to expand my activist life was made with my children in mind and in heart, because I want the world to be a better place for kids, especially quirky, brilliant and sensitive kids. Children won’t be children forever, and I want my kids to know that it is possible to make a difference. I want them to know that we all have a right to be empowered and conscious participants in our lives and worlds. I want them to understand the plays of power and idea that have so thoroughly affected their family. I want them to know that it is okay to be different, and that it is vital that we be true to the best of who we are, whether or not it makes sense to anyone else.

I made a very conscious decision that I would not set aside my activism instinct. I would not try to ignore what I saw in the world and what is inspired in me.  Gradually, I set aside the prescriptions and learned to listen to my heart instead of to the jaded clinicians who seemed to prefer that I settle for a life of quiet and compliant mediocrity.

IV.

In a lot of ways, I am starting all over. I am considering my goals and my ambitions, what interests me and makes me feel hopeful. I have thought a lot about my experience and my skill-sets, taking inventory of what I know and what might I need to learn.

What kind of activist do I want to be?

What would I be good at? What skills might I have that could be useful in trying to support change? What would make activism worth my time? What would make it fun?

I spent well over a year coming to terms with the possibility that I might not ever be truly satisfied or happy unless I was helping to support some sort of vast and encompassing liberation movement.  However, not so long ago, I didn’t have even the slightest idea about how to connect with people or how to make myself useful in efforts toward change.

I began experimenting with ways to get involved. I started to pay attention to what was happening, to look for opportunities. I took deep breaths and hung around the edges of local rallies and meetings, watching and listening.  I commented on websites and joined Facebook groups, sharing ideas. Still battling a nearly incapacitating anxiety, I tried to show up when I said I would, even if nobody cared if I showed up at all. I learned about consensus process in the city park and played around with writing press releases in order to learn how to communicate more effectively. I studied how people responded to me, and considered what approaches seemed to be most successful. I have learned as much about what doesn’t work as I have about what does and I am still learning.

What is most encouraging is the recognition that I am a part of something bigger than myself, that I am a part of a big dynamic dance of action, ideas and influence that has the potential to change the way people think about what it means to be human.  Being involved with people who understand, in their own way, the deep desire to see things change is absolutely vital to me. It helps me to be a part of an activist community, because it is important for me to not feel alone in my worldview. I am not alone.

On May 5th of last year, I took my first trip alone in over 10 years, driving north to Philadelphia for the Occupy Psychiatry protest of the DSM-5. It was a triumph for me in many ways. I was doing something I had dreamed of doing, which was to publicly speak out about the harm that is caused by forceful, coercive psychiatry and pathologized labeling of the human condition.  Ever since I had realized how I had been so terribly wounded in my life, I had wanted to tell psychiatry they were wrong about me. For me, the Occupy Psychiatry protest was a great opportunity to do that.

At that protest I met people that I immediately felt a kinship with, people that I deeply respect and admire. Shared story and experience create powerful bonds between people, particularly when the experiences shared are so deeply personal and formative of our individual histories.

“That happened to you? That happened to me, too. I felt like I was all alone.”

I will know some of these people for years and years. In the span of just a few days, I went from being a socially isolated dreamer to sitting on a bus full of survivors, talking about why we were there and what had happened to us, why we must fight for the rights of children to be who they are without harm and to express their experiences without being pathologized. The people who sat beside me on that journey are, in some ways, like a dispersed family to me. For the first time in years, I felt comfortable and safe being honest about who I am and what I had experienced. For the first time in years, I felt that I was being seen clearly…and that I was accepted, loved.

It’s not possible for everyone in the world who is interested in psychiatric human rights, and the right to not be manipulated or misled by corrupt institutions of profit and power, to attend the May 19 protest and rally in San Francisco that is being held by Occupy Psychiatry. For many who are in support of the grassroots psychiatric human rights movement, the distance to travel is too far, the costs prohibitive.

For people on the West Coast or in a position to travel, this protest and rally is a good opportunity to learn more about the consumer/survivor/ex-patient (c/s/x) movement, to hear some legendary speakers, and to bring their voices to the protest against the DSM-5 and the use of force and coercion within the mental health system. Occupy Psychiatry is about HUMAN RIGHTS and about the integrity of our approach to mental health in the context of the societal and cultural oppression which is so prevalent in this crazy and damaged, dysfunctional world. We have a right to stand up to the things that make us feel sick and make us feel sad, the forces which burden us with the exhausting frustration of  being led to believe that there is nothing we can do other than try to get by, try not to get upset. It is our collective human right to be upset about what is happening within our lives and within the world…and it is our collective responsibility to work towards change.

There are millions of people who want (need) to see a change and activism can take any number of forms. We can smile at strangers and create images. We can tell stories and make impressions. We can notice something small and beautiful while sitting quietly and we can show it to a friend, point it out to a child.  We can shake hands with legislators or go for walks with teenagers. We can send messages and add our names to the list. We can bring our voices to a sea of people in the streets and we can carry our splintered signs.

We can ask:

“What’s your story?”

“What happened to you?”

 “What do you think?”

“What do you want to do?”

There has been a lot of talk lately about activism and getting more organized in our collective efforts to advocate for psychiatric human rights around issues such as:

 - The use of force and coercion in mental health practice and systems

 - Harm and manipulation done by the pharmaceutical industry

 - Cultural liberation and celebration of human diversity

However, operational activism around these issues (or any other issue) is not so simple as, “Get organized!”

…or maybe it is?

Because of the scope of concerns and the intricate dynamics that hold the culture and protocol of the mental system in place, it can be difficult to know where to even begin. How do we effectively and cohesively address the challenges of dismantling and re-visioning an entire system of ideas that are so rigidly reinforced in formal protocol, law, and culture?

How do we bring more people into awareness and action and how do we work together toward mental health liberation?

For more information on the upcoming protest and rally in San Francisco, please check out Occupy Psychiatry’s site: http://www.occupypsychiatry.net/

On Facebook: https://www.facebook.com/events/423484091080573/

The post So, You Want to Be An Activist? appeared first on Mad In America.

I can still feel the cold, sticky linoleum beneath my bare feet as I shuffled my way to the bathroom on those freezing early mornings during the winter of 1961 at Baldpate Hospital in Georgetown, MA. The sensations and memories are as much a part of me now as they were then, perhaps even more vivid now as I realize the shocking brutality of my treatment as an adolescent girl locked into a mental institution for feeling sad and lonely and depressed.

We were lined up side by side in our beds on those mornings, four girls, huddled beneath our cold, white sheets; petrified and silent.  I can see the nurse in her starched white uniform.  I can smell the alcohol she rubbed on my bottom, and I can feel the sting of the sharp needle as she injected the insulin into me: combined insulin coma/electroshock therapy, five days a week for eight weeks.

After we were groggy from the insulin, but often not yet in a coma, the second treatment would begin.  I can still see him walking through the door to our bare hospital-green room, his face grey-white in color, and his black suit and black shoes.  He carried all his equipment in a small black suitcase in one hand, this man of death and destruction. He set up his machine behind our heads, one by one. Curled up beneath our sheets, heads covered, as though seeking womb-like protection, we were – as they peeled the sheets off of us, forcing us onto our backs – bare and open and vulnerable.  I was second in the line-up.

Before being turned, I would often peek out from a small secret opening in my sheet to see what they were doing to Susan, the first to receive the treatment.  I would force myself to watch as if it might prepare me in some way.  And when she would shake violently all over, my eyes would close.  I could no longer watch.  I would shiver beneath my sheet in fear. And then they would come to me.  I can still feel the sticky, cold jelly they put on my temples. My arms and legs were held down by mental health workers.  There was no anesthesia at all. Each time, I expected I would die, and I woke up with a violent headache and nausea.  My mind was blurred, and I permanently lost pieces of the eight months of memory for events preceding the shocks. I also lost my self-esteem. I had been beaten down as flat as a pancake.

But I was lucky. I was very, very lucky. On one of those cold winter mornings exactly fifty-two years ago they injected my friend, Susan, in the bed next to me with more insulin than her young body could tolerate.  A few hours later, as the four of us were having our mandatory afternoon nap, still huddled beneath our sheets, my friend, Susan, went to sleep and never woke up.  She had just turned seventeen.  She was my fragile friend and fellow traveler on this dangerous journey, and when she died, she became a part of me… I am the witness.

On the afternoons after Susan died, I can remember my “mental health care” continued by my being taken into that same shock room, where we also slept at night, by a mental health worker.  He would lock the door, push me up against the wall, and sexually abuse me. My head was foggy from the insulin, dazed from the Thorazine; I was petrified.  I did not scream.  I did not dare.  I survived.  And I did not tell anyone for many, many years.

After six months, I was transferred to another institution, The Menninger Clinic in Kansas.  What I recall most vividly is the seclusion.  The room was dark and hot and sticky.  It was bare except for the roughly-covered striped mattress.  There was no sheet.  I could feel every thread in the fabric against my skin as if I were being cut into pieces with my every move.  And inside, the pain was rushing through my head and in every vein.  I could feel the Thorazine sting as they injected the needle into my skin, and I would then become a stranger to myself, dead and dying from the inside out.  It went on for weeks and weeks and weeks.  I was crying for Susan, for my shattered self, for my lost freedom.  I was trying desperately to survive.  The seclusion did not help.  And the Thorazine nearly killed me. I shuffled.  My tongue was swollen so much that I couldn’t talk.

One woman I shall always remember from that locked ward for her fearless rage.  In her fifties, she wore her graying black hair pulled tightly back in a bun, and she always wore the same long, dark, straight dress and black shoes with thick high heels.  Her fury was something to behold.  The only times I saw this amazing woman were when she would emerge from her room, three times a day, tray in hand, and smash the entire tray with all the food spraying upside down across the floor outside her door, screaming that she did not want to be locked up and she would not eat the food until they let her go free.  Her shrieks were piercing, sometimes even frightening; but I always held her in very high esteem because of her bravery and her ability to yell out the truth for and before all of us who were so much younger.

During the three years I spent in institutions, I saw and experienced a lot of abuse.  Some of it was violent, some of it was more subtle, but it was almost always present in one form or another, like a polluted river running through our lives.  I still see Technicolor images of the elderly women lined up and tied to their chairs from 6 am until 8 pm at Westborough State Hospital.  They mumbled in the hall next to each other. Sometimes they wailed and pleaded to be let out.  They wore diapers, and their urine often spilled out onto the floor.  I tried to soothe them; they were inconsolable.  They were the women who had been abused in their youth; many had been shocked, overmedicated, secluded for years.  They were the women who never made it out, and they were a constant reminder of what could happen to all of us who were so much younger.  They were the poor women of 50 years ago, now dead, many of whom had been locked up by their husbands for “bad” behavior. Most of them had probably simply been looking for love and affection. They now wore the scarlet letters of A for adultery plus S for Schizophrenia. I was educated at Westborough… I am a witness.

We all did the best we could to survive, and many of us did not. I have long felt that my anger and defiance were what ultimately saved me from dying there.  We were all thought of as crazy; I was labeled as being schizophrenic.  But, in fact, we were all desperately trying to find our individual ways of adapting to the atrocities of our “mental health care.” We were learning essential survival skills in this war, not only a war within ourselves, but also a war against the system that had put us there. And it was not a war we could ever win.  We tried and tried and tried. It took vigilance and patience and acting skills,  and it was exhausting.

It is important to realize that the worst atrocities happened to me in the prettiest places.  Baldpate looked like a farmhouse from the front, with flowers and trees, but way back in the woods there was a small concrete unit where the the shocks were given.  That is where they kept me. The other pretty hospital, The Menninger Clinic, looked like a college campus. Terrible abuses of restraint and seclusion and drugging and cold packs happened there.  The large state hospitals were often out in the country surrounded by trees and grass, but at least no one pretended that they were pleasant.  The inside of these hospitals looked horrible, and they were horrible, but the “pretty,” “private,” “nice” hospitals were an illusion where more drugging and sexual and physical abuse happened to me than anywhere else… I am a witness.

Finally, I was released through the help of a friend, and I soon met a kind and gentle doctor. With his sweet smile and a twinkle in his eye, this young man saved my soul and nursed me back to living, into college, and into a full life.  He was a mother to me, telling me that nothing had ever been wrong with me, that I was expressing a natural response to my barbaric mistreatments. I have been absolutely fine ever since meeting him forty-nine years ago. Kindness and compassion are the sweetest, most powerful medicines of all.

Recently I was at the Massachusetts State House, hearing traumatic testimony from young people who had been grossly mistreated in the mental health system, pleading for change. I had done the same way back 35 years ago. There have been some small changes, but not nearly enough.  Damaging drugs are widely prescribed to silence those (including many, many young children) expressing their natural life emotions in response to normal stressful life situations. Shock is still widely given to people without real consent. Mental pain is something which we all feel at some times in our lives.  Some feel it more than others.  It is certainly easier to isolate and silence those with intolerable pain, those who are different, for being around them is a constant reminder of our own vulnerability.

I feel an enormous bond with the young people of today, expressing again, and so articulately, poignantly, and with such dignity, my same concerns of 35 years ago:  In the mental health system, where is the kindness? Where is the compassion for our fellow travelers?

We share a language and set of feelings similar to Holocaust survivors and veterans of combat battle units. This connection to people who have traveled the same rocky path through violent hospitalizations or years of brain-washing medications in their youth is strong and powerful and a fiery political force which is growing stronger around the world every single day.  Our books and our films and our speeches and our written testimonies in the New York Times and other newspapers around the world are waking people up, lifting off their blinders as our experiences are  resonating with their own. Meaningful, lasting revolution is sometimes slow, but the river of passion is flowing.  The barricades are cracking and beginning to fall.  It is time for all to pick up their banners and march forward with us to make this world a kinder and gentler place for all.

The post I Am A Witness…
Fifty Years Later appeared first on Mad In America.

Have a look at the following exchange between Chris Barden, an attorney representing the mother of Dan Markingson, who killed himself in an antipsychotic trial at the University of Minnesota, and Charles Schulz, the Chair of the Department of Psychiatry. The exchange starts around page 207 of the original deposition transcript, which corresponds to page 186 on Scribd.

Q. Okay. Doctor, I want to call your attention to — all right. See at the top there where it says check date of 17 October 2005, right?

A. Yes.

Q. And it says, “Sponsor: AstraZeneca Pharmaceuticals, LP,” correct?

A. Yes.

Q. Okay, and it says, “Site: Stephen Olson,” has a number for him, correct?

A. Yes.

Q. Okay, and at the bottom it says, “Regents of the University of Minnesota,” and it’s Quintiles, Wachovia Bank check for $30,622, correct?

A. Yes.

Q. Okay. I’d like to call your attention to the patient visit about two-thirds of the way down, patient ID No. 13. Were you aware that’s Dan Markingson’s number?

A. No.

Q. Okay, and then you see a visit ID was visit 19. Do you see that?

A. Yes, I do.

Q. Do you see the date was May 8, 2004.

A. I do see that.

Q. And do you see the payment was made for $1,446 on that day for that visit?

A. For that line, I saw, yeah.

Q. For that visit?

A. Uh-huh.

Q. Yeah. Does that date ring a bell to you? Are you familiar with any of the dates in this study?

A. No.

Q. Yeah. Dan Markingson was deceased on that day.

A. Okay. Sorry.

Q. So he really didn’t have a visit 19.

A. Okay.

To summarize: on the date when the body of Dan Markingson was discovered, the CAFE study team billed Quintiles, the Contract Research Organization managing the study, for $1,446. What should we make of this?  The most charitable interpretation, I suppose, is that there was a clerical error of some sort (although even that charitable interpretation suggests a vast disconnect between the machinery of clinical trials and the patients who subject themselves to them.)  Give the history of this particular study, however, it is hard to avoid the suspicion that something darker may have been going on. These “clerical errors” are starting to add up.

We know, for example, that the CAFE study coordinator, Jean Kenney, falsified the initials of a physician on study records. This fact was discovered by the Minnesota Board of Social Work. We also have reason to believe that something funny was going on with the “evaluation to consent” forms that Olson and Kenney supposedly administered to determine whether subjects were able to give informed consent.  The same goes for the HIPAA authorizations that the CAFE study team was supposed to give to potential subjects.  (For background, see this post and this one.)  In fact, the CAFE study team doesn’t even seem capable of saying how many subjects were enrolled in the study.  Depending on what source you believe, the number of subjects ranges from 17 to a figure “in the 20s.”

If harmless clerical errors were to blame for oddities like this, that fact should be easy to clarify simply by looking at the relevant documents.  But if there are systematic issues with the administration of clinical trials that makes it possible to bill for a visit with a dead subject, those issues would be important for other universities and private trial sites as well.  Yet whenever I have requested access to documents, the University of Minnesota has found a way to say no.  The continued refusal of the university to investigate Markingson’s death can only fuel the suspicion that it has much more to hide.

Please consider signing the Change.org petition to investigate the death of Dan Markingson.

The post How Much can a Psychiatrist Charge to Visit With a Dead Research Subject? appeared first on Mad In America.

Yet it seems clear to me that the same dynamics are often involved in both.  The recent article, Why People Believe in Conspiracy Theories suggests we need to better understand the needs that are filled by conspiracy theories, and I believe such an understanding would be useful both in addressing political and social dynamics and in creating better mental health services.

One obvious purpose of beliefs in conspiracies is that they allow us to maintain the stability of our behavior patterns when we get information that would otherwise cause us to interrupt our behavior.  Sometimes of course maintaining stability can be a good thing, other times not.  If I am investing in a company for example, and someone tells me the company is about to collapse, I may suspect that the information about the imminent collapse could be simply a conspiracy to get me to sell, and decide to keep my money where it is, to maintain stability.  This will end up being a good decision if the information about the company collapsing turns out for whatever reason to have been incorrect, but a bad decision if the information was correct.

In short, it can be costly to change our minds all the time, so belief that information that contradicts what we are doing is the result of a conspiracy can help us avoid those costs.  It can also lead us to disaster when the information that challenged us turns out to have been true.

Many Democrats decided 9/11 was a conspiracy, probably because they didn’t want to get sucked into supporting costly national changes designed to confront terrorism, just as many Republicans decided global warming is a conspiracy, because they don’t want to support government regulations designed to combat it.  In each case, the conspiracy belief serves a need by providing a justification for less reactivity to a perceived threat, but also in each case, there is plenty of danger that can result from belief in the conspiracy if in fact it does not exist.

Belief in conspiracy can also help ward off bad feelings.  Maybe it’s not that the music I’m producing is bad or unpopular, it’s just that the music companies are conspiring to suppress it.  Maybe we aren’t really destroying living conditions for future generations on this planet, it’s just that environmental wackos are conspiring to make us doubt ourselves.  There’s research connecting paranoia with self esteem, and in particular with fluctuations in self esteem.

Another good reason for developing conspiracy  theories is simply to develop the ability to think independently, to remember that appearances can be deceiving.  The preponderance of the evidence may point in a particular direction, but this is not proof that such a direction is accurate:  there could be hidden factors, hidden manipulation, which led to the apparently convincing appearances.  Conspiracy theories can provide us with some alternative viewpoints, ways of thinking other than just robotically believing appearances and going along with consensus views.  Such independence of mind can be valuable, though also very hazardous if one simply slips into robotically believing in the conspiracy theory rather than just seeing it as one alternative view among a huge number of alternative possibilities, of which any one, or none, may be true.

There is also of course the need to detect conspiracies that may actually be present in our world.  Failure to look for such conspiracies can lead to giving way too much credence to systematically produced misinformation, such as the misinformation drug companies have created in order to over-promote, and to minimize the hazards of, their products.  People who are more on the lookout for conspiracies are more likely to be on the cutting edge of those who detect actual conspiracies that do exist.

Of course, people who have been betrayed in the past are much more likely to be on the lookout for more conspiracy.  This may be an advantage to them when operating in environments where betrayal is likely, but also may be highly dysfunctional when operating in environments where appearances can largely be trusted and where good allies are available if one only trusts in them.

The belief that the world is organized in the form of a conspiracy against us at least contains the notion that the world is organized:  that may seem more comforting than the notion that the world has no order, or the fear that it may have an order which is unknown to us.  If we tell ourselves we know about the conspiracy, we can feel at least somewhat in control.  Of course, if we organize our lives in response to a conspiracy that doesn’t exist, the actual effect may be to throw our lives further out of control.

Normalizing paranoia and conspiracy theorizing, looking at it as both dangerous yet also an understandable and even sometimes constructive response to normal human dilemmas, is much more helpful than the psychiatric view of looking at it as “illness.”  I look forward to the day when everyone involved in mental health will routinely be trained in such normalizing understandings, and in how to talk to people about the dilemmas we face when we attempt to discern the truth, replacing today’s unhelpful training in diagnostic labeling and narrow bio-medical conjectures.

(All of this is not to deny that some physical health or biological factors can influence how paranoid people are:  it is known that various drugs for example can increase the likelihood of being paranoid, and drugs that amplify dopamine in the brain sometimes increase paranoia, while those that block dopamine can sometimes reduce it.  Like the broader phenomena of fear and anxiety, paranoia is related to biological processes but is also way too complex to be classified as simply a biological mistake:  instead it is more like a process or strategy that may be helpful or not depending on the specific circumstances.)

The post Conspiracy Theories Fill a Need appeared first on Mad In America.

Jacks Ashley McNamara, Author of Inbetweenland (2013) and Co-Founder of The Icarus Project

Jacks McNamara is a genderqueer artist, writer, organizer, and healer. Jacks co-founded The Icarus Project and is the subject of the poetic documentary Crooked Beauty. They are the author of Inbetweenland, released by Deviant Type Press, have self-published 5 zines, and are co-author of Navigating the Space Between Brilliance and Madness.   Jacks is a Public Educator teaching  popular educational workshops on radical mental health collective information, neurodiversity and disability and  writing workshops.  Jacks provides 1:1 Life Coaching and is a professionally trained Somatic Counselor with subject matter expertise in therapeutic relationships.

http://theicarusproject.net/tour2013 

Remaining Cities Spring 2013 Tour:

• NYC, Hudson, NY
• Western Massachusetts
• Burlington, VT
• Plainfield, VT
• Bend,Oregon

“Every month has its tragedy.  April has two.”

(Inbetweenland, Jacks McNamara)

 “I would like to think that these demons don’t come from me, that they are some kind of other, some black invader surging out of my DNA or last night’s dinner to interrupt the real me at work.  But I am coming to realize that I am one self.  The restless demons and the visionary choirs of angels are me, along with the person developing between this body and this routine.  I am trying to forgive myself for being exactly what I am; occasionally brilliant, frequently imperfect, mostly kind, and burdened/blessed with something in my blood that can send me divine inspiration in September along with suicidal plans in November.”

(Holding Lightly, Forgiving Madness by Jacks McNamara)

“There are things you survive that you don’t know you can survive.

And then you survive them.  Again.”

(Big Bend, Reflections on Disability, Dangerous Gifts, and Profound Transformation by Jacks McNamara)

Big Bend, Texas

I started out blogging for MIA when I lived in Texas in crazed unabandoned, unabashed mad love working 60+ hour weeks at a wellness center.  My concept of mental health was acronymatic and I got killed here on MIA for that. I learned very quickly that there was a broader community than the recovery community that I had grown up with and who I had worked with in the State of Texas.

Largely a self-exile due to my politics and firm stance on publically stating that Certified Peer Specialists in State of Texas state hospitals and Local Mental Health Authorities (county providers) require peer supports and peer services to survive because they were dying from their own hands, I took a lasting blow and hit that I couldn’t recover from. As Chair of the CPS Committee to the state’s TA Center, I felt a responsibility to say something.  As a CPS in the State of Texas and as a Peer, I couldn’t stay quiet any longer.  When a friend of mine took her own life that was in my 2007 CPS Class, I spoke up.  Fuck silence.

Colleague associations with me were actually costing them lucrative contracts.  My own peers in the state were refusing to work with the colleagues who were doing business with me on current and pending contracts as I was a perceived malefactor due to my radical mental health peerness.

It wasn’t until I had driven out of state lines in the dead of January’s blackened gray skies into Louisiana, past South Carolina, in and out of Georgia and into the mountains of North Carolina did I feel free to think truly out of the box as a freed psychiatric survivor, peer, consumer, CPS, let alone as a person with the shared experience of living with mental diversity.  My personal bipolar map was an expensive lesson with unmentionable heart ache and one I refuse to repeat.

I have the likes of Bob Whitaker, Will Hall, Dan Fisher, Steve Harrington, Lyn Legere, Neal Nored, Robin Peyson, Wilma Townsend, Paolo Del Vecchio, Risa Fox, Larry Fricks, Beth Filson, Gareth Fenley, Harvey Rosenthal, Laura Van Tosh, Janelle Carson, Jan DeWitt, Pam Hardin, Faith Rhyne and other trusted colleagues, friends and the astute MIA readership to thank for waking me up from my slumber and making it to the other end of this dark tunnel to find my voice and I’m fucking pissed off and grief-stricken.

I’d heard about Jacks Ashley McNamara, Co-Founder, Icarus Project.  I had heard about their work. I had seen their work. Tried to read as much work as possible of theirs so I could be reasonably equipped for a reasonable dialogue about Icarus Project, the 2004 Icarus Project manifesto “Navigating the Space Between Brilliance and Madness: A Reader & Roadmap of Bipolar Worlds” and their new work Inbetweenland.  This is my reflection on McNamara’s and her work.

Rather feverishly and rushing, I was excited to read Jacks’ new work Inbetweenland out of its’ inherent mad love, trauma, death, loss, genderqueerness, trust and moving. “I love you in those moments when you can’t speak, move, sing, jerk off, or smile.”  

Jacks’ influences draw from poets the likes of Li-Young Lee, whose book The City in Which I love You  “…the volume of poetry that broke my voice open” mentioned in Jacks’ poem “The Archaeology of Snow,” to Yosef Komunyakaa, C.D. Wright, Joy Harjo, Khaled Mattawa, Matthew Harvey, Jericho Brown and others.

I was automatically drawn to it like fire and an “… ache of exile in crowded land, the sugar in the vortex… keeping me awake all night…” and the pained words related my own drifting since I’d ran from Texas a few short months since my sister’s death in November ‘12.

I related to the Icarus Project’s bipolar cartography and multiple maps of mad love. “Come home now…” were words I only heard in sweaty sleep.  To Jacks, they’re urgent whisperings to return to her mother’s side, to hold her hand and “… withstand the next year’s blizzards alone.”

“… the songs, the grief, the attempts to keep the sun on our skin for a thousand years…” count the emptiness now and “… loss has made you hard and handled you smooth like ocean handles sea glass, nickel or knife.”  Even better “… after your body poured through my fingers ash the exact texture of sand where I stood – our breath is only borrowed from the earth.”

Inbetweenland is about trauma and I know it.  I feel fire at a distance.  In the Spring and Summer in Central Texas the dryness is ripe with heat kindling.  Smoke would wake me and I’d stand watch paranoid in my knowing.  I feel heat with my hands and where energy is unkempt or burning in circles.  Jacks writes “…hands know things I can’t explain… asks where I am… In space.”  She writes about unwelcome advances and I get that  “… the ground stops buckling despite aftershocks despite fire eventually…” and “… something in my dreams is burning… It is a fierce music.”

In Bruises, Jacks writes “Sometimes when you are trying to forgive the world for its cruelty the only place you can find beauty is in the luminous red and green of stoplights…” sweet to the promise of the proprietary feel and soulful homelife of real hurt, of “… skin after blisters, scar tissue, slightly more beautiful than bare, breathing to the soundtrack of underwater music and a percussion like wooden stars?”

On Breaking up with My Girlfriend, My Job, and My Town is resplendent with No’s not the sake of No’s but because it’s right “… for the sake of fisting and fighting and falling, no.”

Remyth:  Country means that “… we’ll actually get to live, here, now…”  Jacks gloriously promises, “… we won’t have to take drugs to turn off the radios in our heads, drink drugs to get out of bed. We will sleep. Wake up, work create love fuck and raise fruit trees or children if we want to, even if we are three women and two men or one gender-variant unicorn five sharks and a star-bellied sneech.”

Yes, yes, yes… and for all that and more, “… we will get to love without terror.  Or we will love the terror as it leaves along with the morning light… the other side of a hard fight…”

On Sunday, Instead is a favorite of mine with the murmur of, “Something in my dreams is burning. So is something in the world.  We take all morning – this time we push the pillows away from our mouths.  Love something impossible…” so was the very thought of her every empty morning, mid-morning, afternoon, empty night spent alone in the snows and the cold of North Carolina when I was acclimating from Texas to Cooper Riis as a Stranger.  I was a Misnomer.  “Why are you here?“  I was asked in the kitchen by co-workers and I’d turn, stone faced and walk away, “Don’t tweet this.  It is not a status update. It is not porn.”

Finally to the point of acceptance, I think, of being able to plant a garden where I am, here, to grow me wherever I am… in this new small town with new friendly welcoming people who take me at face value as a peer and “… after enough repetitions, my breath settles into my thighs...” and I recall the years of forced Texas ECT that caused irreplaceable shame, harm, lost memories of loves, family, friends, ideas, ideals, “everything obscured like my body I have floated” onto the table my body arching in pain as the antiseptics entered my veins to put me out for the deed.

Never more.

Citations

Big Bend, Reflections on Disability, Dangerous Gifts, and Profound Transformation (McNamara, J.A., 2011); Retrieved http://planetthrive.com/2011/03/big-bend/

Inbetweenland, (McNamara, J.A. 2013). Deviant Type Press, 2013. Oakland, CA.

Navigating the Space Between Brilliance and Madness: A Reader & Roadmap of Bipolar Worlds, (The Icarus Project, 2013, 10^th Ed.), 425 W. 47^th Street, NY, NY 10036.

www.theicarusproject.net (Vision, Mission, Work, Principles); Retrieved http://theicarusproject.net/about-us/icarus-project-mission-statement

The post Inbetweenland with Jacks McNamara appeared first on Mad In America.

Examples:

1. Malarial Therapy of GPI (“General Paralysis of the iInsane” – cerebral syphilis)

Patients with incurable and fatal GPI were deliberately infected with malaria. The very high pyrexia (temperature) killed the syphilis germ, but (hopefully) not the patient. The patient was then (hopefully) cured of their malaria using quinine.

2. Leucotomy/Lobotomy

Patients with chronic and incurable anxiety or tension were deliberately given brain damage, cutting off the frontal lobes of the cerebral cortex from the rest of the brain. This made the patients docile and indifferent – which was presumed to be an improvement. The procedure became so popular that brain damage was inflicted on patients with less severe and probably temporary anxiety and other conditions, too.

3. Neuroleptics/Antipsychotics create Parkinson’s disease (or, rather, Parkinsonism, which may be reversible) for the treatment of fear, agitation, delusions, hallucinations, and hyperactivity

Patients with a range of very distressing psychological and psychotic symptoms were deliberately made to suffer from Parkinson’s disease by giving them dopamine blocking drugs. As well as producing the physical symptoms of Parkinsonism (tremor, stiffness, movement disorders), the drugs produced the psychological symptoms of Parkinsonism – emotional blunting and demotivation. Patients could no longer be bothered to respond to delusions and hallucinations.

Unfortunately patients could no longer be bothered to do anything else, either and became asocial, withdrawn, idle, and without the ability to experience pleasure. Also, when treatment was sustained, the drugs were found to have a permanent effect (tardive dyskinesia) and to create dependence – such that withdrawal often caused a psychotic breakdown.

In a recent development neuroleptic/antipsychotic drugs are being given to tens/ hundreds of thousands of over-active children (aka ‘bipolar’). Parkinson’s disease certainly puts a stop to these children’s hyperactivity! – and this is regarded as progress.

Some drugs ‘normalize’ the situation as their primary therapy – for example a narrow spectrum antibiotic (more or less) does this by killing an invading germ.

‘Side effects’ are often an instance of the phenomenon. Epilepsy may be prevented, at the cost of causing chronic sleepiness. Pain may be alleviated, at the cost of causing reduced alertness and constipation, or stomach pains and potentially ulcers.

Ideally the side effects are less severe than the original pathology, and temporary – but unfortunately this doesn’t always happen.

Examples also occur in surgery: treating colon cancer by removing the colon – creating a disease state (colostomy etc.), but often saving the patients life. The same applies to many ‘resections’.

Or, in plastic surgery, face wrinkles are treated by causing muscle paralysis (using ‘Botox’).

Indeed, ‘curing’ is relatively rare. Medicine is mostly about trying to relieve symptoms, or choosing the least worse of several pathological alternatives.

But it is important to know that that is what you are doing.

Things get nasty when people pretend they are ‘normalizing’ a patient when they are actually, deliberately, causing them to suffer from a different disease.

The post Treating one Disease by Causing Another appeared first on Mad In America.

For years, the MindFreedom Shield Campaign has been using PEOPLE POWER to protect individuals from unwanted psychiatric interventions. Shield alerts have the potential to activate a network of thousands to raise a non-violent ruckus with the goal of stopping forced psychiatric interventions.

Look at Glen K. of New York, whose forced electroshock was stopped just 48 hours after his MindFreedom Shield was activated. Look at Elizabeth Ellis of Minnesota, who wrote at the completion of the MindFreedom Shield campaign to free her, “If it hadn’t been for MindFreedom I would still be getting forced shock. I know the hospital recognized they had a power to reckon with in MindFreedom. Thank you, thank you, thank you so much for the support!”

There are two keys to a successful Shield Campaign — PEOPLE POWER and RIGHTEOUSNESS. One or two emails or calls won’t make much of a difference to a mid-level mental health administrator or a staffer for a state legislator, but 500? 1000? And each writer and caller is passionately aware (often at the cost of difficult firsthand experiences) that forced psychiatric treatment is a human rights violation, that we ALL have a right to human dignity and bodily integrity.

MindFreedom is not alone in these beliefs; we stand in solidarity with the United Nations’ Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, who stated recently that “free and informed consent should be safeguarded on an equal basis for all individuals without any exception… provisions allowing confinement or compulsory treatment in mental health settings must be repealed.”

Better still if they are never passed in the first place.

Texas HB 2212

We alert the mental health activism community to proposed Texas House Bill 2212 (full text here), which will dramatically expand the population eligible for assisted outpatient commitment in this state. In a blatant assault on the right to bodily integrity, the bill would allow psychiatric interventions including what the state says is “clinically necessary medication” to be administered by force to law-abiding citizens living in the their own homes based on a few, elastic criteria.

We’re calling on everyone – whether they live in the state of Texas or not – to alert Texas legislators and their staffers to the human rights violations this would entail. Write an email, place a phone call, send a letter… RAISE YOUR VOICE and tell them that forced outpatient commitment is:

-     a human rights violation (according to the U.N.)

-     ineffective at reducing hospital readmissions and improving clinical/social outcomes (according to the research of Oxford professor and former supporter of the intervention Tom Burns – he’s now calling for a moratorium on the practice)

-     a traumatizing and dehumanizing ordeal, lasting months or years, and a profound deprivation of liberty for law-abiding citizens (according to this individual subjected to long term home-based forced psychiatric drugging and many other survivors)

Learn more about how you can get involved in this important effort HERE.

MindFreedom will be there to Shield its Texas members if this bill passes. But in the meantime you can make a difference in our campaign to shield every citizen in Texas from these invasive legal powers being added to forced psychiatry’s arsenal by voicing YOUR opposition to Texas legislators and their staffers.

MindFreedom is dedicated to fighting for the right of all people globally to be free from unwanted psychiatric labeling, drugging, and dehumanization. Will you join us in this important struggle?

It takes just a few minutes of your time to add your voice to the chorus of hundreds of human rights advocates who have already inundated the Texas state house with correspondence. But those few minutes of your life would help SHIELD many Texan lives from the threat of psychiatric force.

The post Shield Texans From Psychiatric Force: Oppose Texas House Bill 2212! appeared first on Mad In America.

Can people who hear overwhelming and distressing voices be assisted to find ways to live successfully with their voices? 

The hearing voices approach originating in Europe and developed in partnership with voice hearers indicates that this is indeed the case.   

There are now peer support networks in over 27 countries across the world with groups and a network now being developed in the USA.

In November 2012, Cardiff, Wales, more than two hundred and fifty people who hear voices, see visions and have other unusual and extreme experiences (referred to as “hearing voices” in the rest of this post), family members, friends, activists and allied experts by profession came together from around the world. The purpose of the three-day meeting was to celebrate the twenty fifth anniversary of the formation of hearing voices movement, to consider the lessons learnt so far and to envisage what we should be doing over the next 25 years. The excellent film, “Voices Matter“, that you can now view on this site, is a record of the event and I strongly recommend that you take a look.

It all started In 1987, when Patsy Hage, a voice hearer made this challenge to her psychiatrist Marius Romme: “You believe in a God we never see or hear, so why shouldn’t you believe in the voices I really do hear?”.  At the time, Marius, like many psychiatrists (as they still do today) dismissed voices as being part of an illness process and it was this conversation with Patsy that first led him to reconsider. Marius explained how it effected him a couple of years later:

“It was Patsy Hage, who made it clear to me that the psychiatric approach was not very helpful. Because as a traditionally trained clinician I was only interested in her voice hearing experience as far as it concerned the characteristics of a hallucination, in order to construct a diagnosis in combination with other symptoms. But she was interested in the voices and the power they exerted over her; in the stress she experienced; in what they told her etc. She did not like my reductionist approach. She was hindered by her voices and medication did not work with her. And as a result she became more and more isolated because the voices forbade her all kind of social activities. 

“In order to break through this isolation, I suggested she should talk to another patient who also heard voices. First she felt some resistance to the idea, but eventually she accepted the proposal as we did not know of another way to learn more about hearing voices. I also realised that I did not know much about the experience of hearing voices. So I organised a meeting and the patients who attended were very enthusiastic about talking about their voices. They recognised each others experience. However, after some contacts they, as well as I, realised that they still did not know how to cope with their voices, because all the patients I knew were more or less powerless against their voices. 

“To solve this problem we asked for help from a national TV talk show (like the Oprah Winfrey Show). We wanted to contact people who not only heard voices, but also were able to cope with them. In this talk show Patsy told her story and I asked if people who knew how to cope with the voices would contact us. To our astonishment 700 people responded. To organise the information we constructed a questionnaire together with Patsy Hage. From those who returned the questionnaire we selected people who could explain clearly what they did in coping with their voices. This was the beginning of our new understanding of the meaning of voices.” 

450 people returned the questionnaire and of those 150 people said they were able to cope with their voices without assistance from psychiatry, indeed in many cases reported they were happy to hear voices.

For Marius this was a the first step in walking away from the accepted medical view of what voices meant (e.g. nothing) and instead take his lead from Patsy and other voice hearers. Following on from conducting the initial research they did something more, something that is quite unusual. Rather than publishing the findings in a peer reviewed journal and perhaps setting up some kind of professional institute instead they founded an organisaton of and for people who hear voices and organised conferences.They did this in order to encourage a broader discussion, to change the attitude of society and to try to change the way voice hearers were treated by the medical profession and especially psychiatrists.

Thus began a stream of inquiry and Independent research that has discovered that many more people than imagined do hear voices – and that the majority of people are not troubled by the experience. Indeed many even see it as a positive experience. This lead to the conclusion that it is the relationship that a person has with their voices they hear that determines whether the experience is a good one or a frightening one. And learning from others and with support a person can learn to change that relationship.

My own involvement in the hearing voices movement began shortly after this, when in 1988 I met Marius and Sandra Escher in Trieste, Italy at a World Health Organisation sponsored conference entitled (somewhat ironically as it turned out) “The Question of Psychiatry”. Marius, and his colleague and now partner, Sandra Escher, a science journalist,  presented information and results about the work on “hearing voices”.

The main reason I was intrigued by their work was because of my brother’s experience. We had always had a close relationship and in 1983, my brother had a spiritual awakening, at times troubling, even frightening and at other times enjoyable and enlightening. Talking about this later, he said he felt he needed to embrace this new world he was living within. This  occurred shortly after he had moved to live in Manchester (where I was) following the break up of a long term relationship, and abruptly resigning his job in advertising.

At the time I thought I knew a lot about mental health. As a campaigner for better services for people with mental illnesses, I had seen for myself the negative aspects of psychiatry such as the use of anti psychotic medication, electro convulsive therapy (ECT) and the lack of interest in developing empowering and supportive services in the community. As a member of a local association of Mind (the English mental health charity) I was part of an attempt to change the nature and role of mental health services. Emphasising the importance of working alongside people with mental health problems, rather than for them. None of this helped, though, when my brother began to behave and think very differently then he had before. In spite of my best efforts to keep him out of psychiatry (which by then I had little faith in) he ended up in a hospital and had been given the diagnosis of schizophrenia.

On reflection my lack of faith in his explanation that he was undergoing a spiritual crisis, was a kind of betrayal. I feel I reacted in the same way as psychiatry – I was so blinded by the supposed scientific credibility of schizophrenia that I was unable to fully accept an alternative explanation. Later, it began to occur to me that what he said was right and what I thought was wrong. Although my doubts about the meaning of his experience began to form, I had a problem working out what I could do about it. I could not understand how he had transformed into a person I sometimes felt I no longer knew. Although I could see that there was joy in what he experienced, there was also pain and bewilderment (including at the reactions of the people around him) and a vulnerability, due to his total commitment to really experiencing what was happening to him.

Unsurprisingly, my attempts to help him were hindered by my own anxieties and fears. It became obvious that even though I was involved in mental health campaigning there was little I could do to prevent him from being hospitalised and subjected to coercive treatment I had little faith in and had seen fail many other people. Even though I had always been concerned to promote and support forms of work that assisted people in maintaining their own autonomy, I found myself helpless in the face of my brother’s experience.

Fast forwarding to 1988. On the basis of the initial work, Marius and Sandra had made a priority of searching for allies, people who might be prepared to carry out similar investigations in their own countries. I wanted to emphasise this starting point because what they were saying had a powerful effect on me and on other people I talked to in England about this new way of thinking about voices. This is the challenge that Marius set me:

“I ask you to try to do the same in England. Groups need to be established in each country where people can talk together about hearing voices… it takes groups of people with the same experience to change attitudes… in America and England now, psychiatrists are following the needs of parent organisations. My goal is not changing psychiatry, not changing parents, but offering people hearing voices an organisation from which they can emancipate themselves. You have to organise groups, and then psychiatry follows.” (Marius Romme in interview with the author in November 1988)

Later that year the first English Hearing Voices Group was formed, modelled on the Dutch peer support group.  There are now over 200 groups.

The hearing voices movement is founded on the principle of finding ways to help voice hearers who are troubled by their experience to change their relationships and attitudes to their voices. To find ways of helping people who heard voices who were subject to psychiatric intervention to take up their lives again and to make sure that what was learnt was well known to people who hear voices, family members, friends and wider society.

We have always looked for ways to increase everyone’s understanding of the experience of hearing voices and to challenge the misconceptions that many people have about voices. We have always believed that if society changes its attitude to “voices” then psychiatry is much more likely to follow. Marius puts it like this:

“What this approach shows is that we must accept that the voices exist. We must also accept that we cannot change the voices. They are not curable, just as you cannot cure left-handedness – human variations are not open to cure – only to coping. Therefore to assist people to cope we should not give them therapy that does not work. We should let people decide for themselves what helps or not. It takes time for people to accept that hearing voices is something that belongs to them.” 

Yesterday I talked with my brother about the hearing voices movement, his main regret was at the time there was no one to provide him with the kind of support that he needed to understand the crisis he was in, I reminded him that twenty years ago he told me:

“The experience is an overwhelming one. It’s like being thrown into a turbulent river of change and not being able to swim or being in an alien world without a guidebook and unable to read the signposts. I suggest that we need to learn to swim or that we are taught the language and know a little about this world before we get there. Obviously the confusion and fear associated with an unexpected arrival would result in distress and often an inability to function. This is added to by the social/cultural response to the individuals apparent loss of control. 

“I hope one day those who may experience a so called “psychosis” in the future and mostly to those that already do so will be able to find this kind of support. I would hope that this would empower individuals by putting their experience on a more positive footing and by putting the experience into a framework and context that can be easily related to. In addition I would hope that once so empowered the individual might be enabled to seek out or take up an established practice and transform an otherwise negative experience into a positive one.”

Maybe we are getting there. A different way of thinking about hearing voices and a new way of helping people who are troubled by their voices is being developed. A journey that continues to this day, a journey that crucially, recognises that people who hear voices are the experts of their own experience, who are in the best position to appreciate what this experience means and what really helps. With the support of the worldwide hearing voices network, voice hearers, some of whom have spent long periods of time in psychiatric care, have reclaimed their lives and are now able to say they hear voices and accept them as part of themselves.

It has certainly had that effect on me, the next time I was part of someone’s life who heard voices, I felt far more confident about how to listen and how to help. That person was Ron Coleman (who some of you will know), but that is another story. Now though, I can say I feel comfortable talking to people about their voices and even with their voices, in a future posting I’ll say more about that.

There was a happy resolution to my brother’s life story, too. With his friends he found his own route out of traditional treatment and although it took him some time, he later joined a hearing voices group and found his own explanations, ways of coping, ways of accepting and of living with his experience. He has had his own business as a Tai Chi teacher for the last fifteen years, is a father of three and has a great life. We talked about this article last night and he told me he still has the same experiences, without them he wouldn’t be who he is today; it is part of him. The difference, he said, is that now he knows how to keep his head in the clouds, whilst ensuring his feet are planted in the earth.

“Voices Matter”

Information:

For more information about INTERVOICE (International Network for Training Education and Research into Hearing Voices) and the hearing voices movement, check out the following:

INTERVOICE website

INTERVOICE Facebook group:  An open forum for discussion, support, advice and information about hearing voices and is aimed at anyone with an interest in hearing voices including voice hearers, family members, friends and workers and not forgetting voices themselves.

Hearing Voices Movement Media Watch provides regular information on research and media coverage of hearing voices and related topics

INTERVOICE Twitter Page

INTERVOICE Youtube channel

Quarterly email newsletter

Google World Map shows the location of groups that are running in 27 countries around the world

The post The Hearing Voices Movement:
Has it Really Been 25 years? appeared first on Mad In America.

Anyone who knows my work will know that I have a real problem with this paradigm, believing that it generally causes much more harm than benefit (though I don’t discount that some people do believe that they experience some benefit from it). So, what is it then about this story that grabbed me? I recognized that if we read Linda’s story while holding a different paradigm (i.e., a different basic set of assumptions) than what she intended, then this story reveals in plain sight what I believe are some of the most fundamental issues at the heart of this epidemic of “mental illness” that so pervades our society.

What is this basic shift of assumptions? Linda clearly frames her story within the “mental illness as a lifelong brain disease” paradigm (what I’ll refer to simply as the “mental illness” paradigm). What if we shift to a significantly different and in many ways more “common sense” paradigm? What if we let go of the concept of “mental illness” altogether and adopt a very different set of assumptions: (a) Human beings (and indeed all living organisms) strive continuously towards a healthy, enjoyable existence; (b) moving towards and maintaining such an existence requires that we find relative peace with certain dilemmas that are inherent within our existence (e.g., death, loss, personal identity, balancing autonomy and relationship, balancing freedom and security, finding meaning, etc.);  (c) the more difficulty we have in finding relative peace with these dilemmas, the more we suffer; and finally (d) some individuals, for various reasons and at different points in their lives, are particularly vulnerable/sensitive/aware of/challenged by these dilemmas and are therefore more prone to experiencing intense suffering associated with them. In other words, I’m suggesting that we return to Linda’s story after trying on a different lens—one that allows us to see those conditions we generally refer to as “mental illnesses” as instead the natural manifestations of an individual’s struggles with the fundamental dilemmas inherent in simply being alive. So we make the shift from a “mental illness” paradigm to an “overwhelmed by natural human experience” paradigm. What I find particularly interesting about Linda’s story is that she’s clearly narrating it from the “mental illness” paradigm, and yet allusions to this latter paradigm are practically bursting through the seams.

So with this paradigm shift in mind, let’s look more closely at some of the overarching themes in Linda’s story and compare just how different the methods of support and outcomes are likely to be when acting from each of these different paradigms.

The “mental illness” paradigm creates a self fulfilling prophecy of actual brain disease:  Linda gives a rich account of a descent into increasingly overwhelming thoughts, feelings and perceptions, and she provides an equally rich account of the intensive psychiatric “treatment” she received in parallel with this descent. This journey into increasing disability began with a blend of feeling overwhelmed by the life she had created for herself (giving birth to 3 children while simultaneously pursuing a Ph.D.) and powerful existential insights, especially into personal identity, death, and loss. Feeling overwhelmed by the intense “psychic pain” associated with all of this, she turned to the only support mainstream society really encourages for this kind of thing—she accepted that she had a “mental illness” and checked herself into a psychiatric hospital.

From this point forward, we learn that two major streams of events play out in parallel with each other—Linda surrenders her mind and body to doctors who “experimented with about 100 different combinations and dosages of medications,” becoming essentially a living test tube in their hands; and she experiences a downward slide into increasing physical and mental disability and even periods of florid psychosis (profound disconnection from consensus reality). And yet, incredibly, Linda never draws a link between these two—the intensive drugging on the one hand, and the increasing disability and chaos on the other. She does describe some disturbing “side effects” of various drugs, but she has clearly bought the mainstream narrative that all of her overwhelming experiences were merely symptoms of her “illness,” and that even though there are some unpleasant “side effects” to all the drugs she’s been given, they almost certainly prevented her from becoming much more “ill.” In other words, the possibility that the intensive drugging itself may have seriously worsened her condition doesn’t even seem to be a consideration.

Let’s take a moment here and look at the research. Robert Whitaker (in Anatomy of an Epidemic) and others have compiled extensive literature reviews suggesting that the kinds of chronic “depression” and “bipolar disorder” that we see today were apparently much rarer before the introduction of psychiatric drugs. What we call “depression” was apparently transient in the large majority of cases, with “relapses” were also relatively rare. And the more extreme forms of “bipolar disorder” that seem to be so prevalent today were also much more rare. The prevalence of such disabling bipolar disorder was seen only 1 of 5,000 to 20,000 individuals prior to the introduction of psychopharmacology, with 75% to 90% of these individuals going on to experience “good long-term functional outcomes.” And now? We find that 1 in 20 to 50 individuals experiences such disabling bipolar disorder, with one 33% going on to experience “good long-term functional outcomes.” This is an increase of between 100 and 1,000 times the prevalence rate since the introduction of psychopharmacology, and among these individuals, a greatly reduced likelihood of full recovery. In addition, it’s been shown that the use of antipsychotics can ironically increase the likelihood that someone will experience psychosis in the first place or move from a transient psychotic condition to a more chronic course (this is discussed in Whitaker’s Anatomy of an Epidemic and in my own book, Rethinking Madness).

So, knowing all of this (this research comes from multiple peer-reviewed sources and is readily available), how can someone as educated as Linda not even entertain the idea that the “treatment” itself, which most likely included all of the aforementioned types of psychiatric drugs and more, may very well have played a major role in the radical deterioration of her condition?  “100 different combinations and dosages of medications,” she said. Think about that for a moment. By acting from this entirely unfounded assumption that Linda and others who experience such crises must have some kind of brain disease, we attempt to “treat” the brain, which is of course absurd since we don’t even know what the heck it is that we’re treating. So we flood an individual’s brain with an array of highly toxic chemicals designed to make it through the brain’s natural blood-brain barrier and impact this extraordinarily complex and fragile organ in a ridiculously blunt and haphazard manner, and we call this “treatment.” Can we really be surprised that such treatment so often results in converting natural and transient crises into lifelong chronic “illnesses”? The terrible irony is that while it seems very likely that such crises are not the manifestation of a lifelong brain disease, the standard “treatment” actually ensures that this fantasy becomes a reality. After receiving such treatment, there’s is no longer any question about it: Now, you do have a chronic brain disease.

Actually, I don’t blame Linda for not making this connection. The tragic truth is that our society has become so entrenched in the “mental illness” paradigm that many (and perhaps most) people now consider alternative perspectives a kind of ignorant quackery. And yet, if we do make this little shift in perspective, moving away from the “mental illness” paradigm to the “overwhelmed by natural human experience” paradigm, I can’t help but wonder just how much more easeful and enjoyable Linda’s and many others’ lives may have been…  just how clear the absurdity of such treatment would become to anyone who took the time to consider it…  just how much more frequently people would stand up to such treatment and say enough is enough…  just how much rarer stories of such devastating demoralization, dehumanization, and intoxication would become.

So, if we act from this different paradigm that I’m presenting here, then how do we go about offering alternative support for someone who is in so much “psychic pain” that they’re seriously considering taking their own life (as was the case for Linda) or possibly even causing serious harm to someone else. Well, the current m.o. is to apply the kind of “treatment” that Linda received—a person overwhelmed by feelings of hopelessness and powerlessness reaches out for support, and what do they get? They’re stripped of any last remnants of hope and self-empowerment and provided with a new set of problems in the form of substance dependence and the particularly disempowering “mental illness” paradigm as a means for making sense of their troubles.

I admire Linda for recognizing her potential for self harm and finding the courage to reach out for support, and yet just imagine if she had a very different kind of support available to her—the kind of 24-hour “suicide watch” support she felt she needed but without all the dehumanizing, disempowering and intoxicating baggage that generally comes along with this. This is not a difficult thing for our society to make readily available—we already have successful models of peer-run residential homes and other types of homes that could function in this way (such as Soteria-style homes), and families and friends themselves could offer such support to loved ones in times of need. The cost of providing such places of refuge is certainly much less than the cost of psychiatric hospitalization—there are simply no excuses as to why we don’t have such places of refuge set up in every community and readily available to anyone who needs them.

And what about other kinds of support? Well, if we operate from the “overwhelmed by natural experiences” paradigm and recognize the innate wisdom within all beings that continuously strives for health and wholeness, then we can let go of the “I’m an expert, I’ll take over and fix it” role and instead explore ways to support the person’s own inner resources and honour their own wisdom and self agency. This is akin to supporting the growth of a plant. We can’t force a plant to grow or even to heal, but what we can do is provide it with healthy soil, adequate water and sunlight, and then stand back and trust in its own innate wisdom. Likewise, when a person is in distress, we can work collaboratively with that person and explore the ways that this person may not be receiving adequate nourishment, and look for potential “toxins” in their environment that may be restricting their growth. And along with this, we don’t attempt to reduce their distress to problems in any one realm but recognize that many different realms work together to contribute to the wellbeing or distress of an organism—psychological, physiological, relational, environmental, spiritual, etc.

And who knows, there may be occasions where some psychoactive chemicals may provide some benefit, but rather than pretending to “correct a biochemical imbalance,” we name the drugs for what they really are—not “anxiolytic” or “anti-anxiety” medication but drugs that will numb you out for a while, maybe help you sleep; not “antipsychotic” medication or “mood stabilizers” but drugs that will tranquilize you and really numb you out and make it difficult to remember what your problem was (perhaps); and not “antidepressants” but… well… uh… occasionally effective placebos(?) Let’s face it. Drugs are drugs, whether illicit drugs or psychiatric drugs. And what have drugs been shown to do time and time again? When effective, drugs provide some degree of short term relief and benefit but nearly always at the expense of significant long term harm. Sometimes that short term benefit may seem to be worth it, but let’s be honest with ourselves and not forget to look at the big picture.

The “mental illness” paradigm interferes with our own natural resources and innate movement towards healing and growth:  Linda’s story comes across to me as yet one more example (an excellent example, actually) of a person who experienced a natural though clearly precarious existential crisis—something that seems to be a hazard that goes along with being particularly sensitive and open in the midst of the “madness” of contemporary society. In her case, the existential dilemmas associated with death, loss, meaning, and personal identity appear to have been particularly potent.

The literature throughout human history is loaded with accounts of people who go through such crises as a gateway into a profound positive transformation and a much richer, more meaningful and more enjoyable life; and it’s also loaded with accounts of people who have a very difficult time integrating these profound truths and who go on to suffer greatly as a result of it. And when we look closer at this literature, we find that certain models for understanding these experiences are more conducive to successful integration than others. In particular, honouring the deeper truths that are so often unearthed within such crises and acknowledging the potential for positive transformation resulting from them has clearly led to much better outcomes in general than perceiving such crises as the manifestation of a diseased brain (I discuss this in great detail in my own book, Rethinking Madness). And yet we continue to perpetuate the very harmful “mental illness” paradigm, with all the toxic treatments, hopelessness, and self fulfilling prophecies that so often go with it.

The emerging “anti-stigma” movement provides a particularly ironic and tragic example of just how entrenched the “mental illness” paradigm has become in our society. This movement is supposed to embody the spirit of offering a more humane kind of support for individuals struggling with such crises and reducing the stigma and hopelessness that these people generally experience. And yet this very movement generally goes to great lengths to perpetuate the “mental illness” paradigm in spite of the strong evidence showing that this paradigm actually seriously exacerbates stigma—both stigma and fear from others as well as internalized stigma and the intense withdrawal and hopelessness that this so often entails (this is more thoroughly discussed and referenced in Rethinking Madness).

Even the “mental illness” paradigm, as harmful as it is, has a difficult time squashing our fundamental drive towards health and wholeness:  One final aspect of Linda’s story that I was struck by was its offer of yet another excellent example of the resilience of the human spirit, something I never cease to be amazed by. I’m inspired by how far Linda has apparently come in reconnecting with her creativity and her aliveness in spite of all that she’s been through—in spite of her own intense struggles with the dilemmas of existence, in spite of the horrendous “treatment” she and her poor brain have received, and in spite of continuing to live with the “insidious tumour” of having taken on the identity as someone with a lifelong “mental illness.” I’m also inspired to see that in spite of having been inculcated into the “mental illness” paradigm, she’s developed creative ways to integrate some of the deeper existential issues that I believe were probably at the root of her distress in the first place—especially her sense of going through a kind of disintegration and reintegration of her “self” at a very core level. I’m grateful for Linda’s willingness to share her story of courage and strength in the face of such devastating confusion and deep personal insult.

Use of the term “mental illness” itself contributes to the entrenchment of the “mental illness” paradigm:  So, considering its ongoing lack of validity and the enormous harm that it causes, why has the “mental illness” paradigm becoming so entrenched in our society? While I’m sure that there are many factors contributing to this (see the section below), I believe that the term “mental illness” itself is one of the largest culprits (as Szasz and others have previously pointed out). A concept that is more appropriately used as a metaphor (the mind being “ill”) has somehow become interpreted as a fact. Implicit in the term “mental illness” are two problematic assumptions: (1) that the mind (our subjective experience) is nothing more than an epiphenomenon of the brain, and (2) that unpleasant, disordered, or anomalous experiences occurring within one’s mind, especially when the catalyst for these is not so clear, must imply some disease of the brain. Looking more closely at the first assumption takes us down a bit of a rabbit hole that I don’t want to take the time to diverge into here, but the second assumption is where I believe we really get into serious trouble and is one that can easily be discredited. If someone experiences fear due to a threat, or sadness due to a loss, or confusion due to a new insight, of course we would find it absurd to consider these the manifestations of a diseased brain. But we also know that extreme and unusual subjective experiences can occur from causes that are less clear, such as what may arise from trauma, childhood abuse, or otherwise being overwhelmed by various core existential dilemmas. And unfortunately, it is these times when the catalysts are less clear that we are so quick to evoke the term “mental illness” and head down the path fuelled by the assumptions associated with this term (i.e., that the brain must be diseased in some way and then treated as such). And as discussed earlier, once we head down this path, the “treatment” is likely to actually create a genuine brain disease. So what we find, then, is a positive (self-reinforcing) feedback loop between the increasing use of a flawed and oxymoronic concept, “mental illness,” and the increasing prevalence and the illusory validation of the “mental illness” paradigm within our society.

The “mental illness” paradigm—an insidious cancer:  I find it interesting to turn the “medical model” language of “mental illness” back onto itself and consider this entire “mental illness” paradigm as acting like an insidious cancer (the difference in my use of the term “cancer” here being that I’m readily acknowledging that this is just a metaphor). Cancer is essentially what occurs when a cell of an organism “forgets” its role as a member of a larger whole and turns against the organism, becoming consumed only with its own reproduction. Using this metaphor, we can say the “mental illness” paradigm fosters this turning one part of a whole against itself. We see this taking place interpersonally between members of our society as we develop ever increasing fear of those labelled “mentally ill,” and we see this taking place intrapersonally as we develop ever increasing fear and suspicion of our own “unusual” or “extreme” subjective experiences. We see signs of this cancer spreading throughout nearly every branch of contemporary Western society—our schools and education systems, our media, our government policies, our way of trying to make sense of ourselves and others’ experiences and behavior, and of course our health care systems. We also notice that this type of cancer thrives particularly well on a diet of greed, fear and ignorance—greed (enormous financial incentive to many in the pharmaceutical and mental health industries), fear (especially our fear of uncertainty, preferring an understanding that is clear although flawed to having to make some peace with mystery and the unknown), and ignorance (just think of the daily bombardment by massive amounts of misinformation coming at us from almost every angle).

So what do we do about it?  What will it take before we (collectively speaking) finally recognize the enormous harm being caused by this cancer that we have somehow set into motion? And once we do become aware of it, what do we do about it? Perhaps one good strategy is to attempt to starve this cancer of the ignorance, fear and greed that feeds it. We can strive to overcome our ignorance with education and critical thinking, and we can work towards developing qualities that act as effective antidotes to our fear and greed—qualities such as compassion for ourselves and others, a quality that naturally arises when we recognize the very challenging existential dilemmas with which we all must struggle; tolerance for perspectives, experiences, and behaviours that are different from our own; tolerance for our own challenging feelings and experiences; an appreciation of the interconnected web of which we are all a part; and an appreciation for the basic wisdom that exists within all of us that continuously strives towards health and wholeness.

Interview with Paris Williams

The post The “Mental Illness” Paradigm:
An “Illness” That is out of Control appeared first on Mad In America.

Inbetweenland author and Icarus Project Co-Founder Jacks Ashley McNamara

Jacks McNamara is a genderqueer artist, writer, organizer, and healer.

Jacks co-founded The Icarus Project and is the subject of the poetic documentary Crooked Beauty. They are the author of Inbetweenland, released by Deviant Type Press, have self-published 5 zines, and are co-author of Navigating the Space Between Brilliance and Madness.   Jacks is a Public Educator teaching  popular educational workshops on radical mental health collective information, neurodiversity and disability and  writing workshops.  They provide 1:1 Life Coaching and is are a professionally trained Somatic Counselor with subject matter expertise in therapeutic relationships.  Jacks can be reached directly at http://ashley-mcnamara.net/ for more information.

Remaining Cities Spring 2013 Tour:  http://theicarusproject.net/tour2013

• NYC, Hudson, NY
• Western Massachusetts
• Burlington, VT
• Plainfield, VT
• Bend,Oregon

“Every month has its tragedy.  April has two.”

(Inbetweenland, Jacks McNamara)

 “I would like to think that these demons don’t come from me, that they are some kind of other, some black invader surging out of my DNA or last night’s dinner to interrupt the real me at work.  But I am coming to realize that I am one self.  The restless demons and the visionary choirs of angels are me, along with the person developing between this body and this routine.  I am trying to forgive myself for being exactly what I am; occasionally brilliant, frequently imperfect, mostly kind, and burdened/blessed with something in my blood that can send me divine inspiration in September along with suicidal plans in November.”

(Holding Lightly, Forgiving Madness by Jacks McNamara)

 “There are things you survive that you don’t know you can survive.  And then you survive them.  Again.”

(Big Bend, Reflections on Disability, Dangerous Gifts, and Profound Transformation by Jacks McNamara)

Big Bend

I’d heard about Jacks Ashley McNamara, Co-Founder, Icarus Project.  I had heard about their work. I had seen their work. Tried to read as much work as possible of Jacks’ so that I could be well equipped for a reasonable dialogue about Icarus Project, the 2004 Icarus Project manifesto “Navigating the Space Between Brilliance and Madness: A Reader & Roadmap of Bipolar Worlds” and her new work Inbetweenland.  This is my reflection on McNamara and their work.

The Icarus Project envisions a new culture and language that resonates with our actual experiences of ‘mental illness’ rather than trying to fit our lives into a conventional framework.

It is a network of people living with and/or affected by experiences that are commonly diagnosed and labeled as psychiatric conditions. Icarus believes these experiences are mad gifts needing cultivation and care, rather than diseases or disorders. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation in an oppressive and damaged world. Participation in The Icarus Project helps to overcome alienation and tap into the true potential that lies between brilliance and madness.

The Icarus Project is a collaborative, participatory adventure fueled by inspiration and mutual aid. Icarus visions a reality through an Icarus national staff collective and a grassroots network of autonomous local support groups and Campus Icarus groups across the US and beyond.

Rather feverishly and rushing, I was excited to read Jacks’ new work Inbetweenland because of its inherent mad love, trauma, death, loss, genderqueerness, trust and moving on. “I love you in those moments when you can’t speak, move, sing, jerk off, or smile.”  

Jacks’ influences draw from poets the likes of Li-Young Lee, whose book The City in Which I love You is “…the volume of poetry that broke my voice open” mentioned in Jacks’ poem “The Archaeology of Snow,” to Yosef Komunyakaa, C.D. Wright, Joy Harjo, Khaled Mattawa, Matthew Harvey, Jericho Brown and others.

I was automatically drawn to it like fire and like an “… ache of exile in crowded land, the sugar in the vortex… keeping me awake all night…” and the pained words related my own drifting since I’d run from Texas a few short months after my sister’s death in November ‘12.

I related to the Icarus Project’s bipolar cartography and multiple maps of mad love. “Come home now…”  were words I only heard in sweaty sleep.  To Jacks, they’re urgent whisperings to return to her mother’s side, to hold her hand and “… withstand the next year’s blizzards alone.”

“… the songs, the grief, the attempts to keep the sun on our skin for a thousand years…” count the emptiness now and “… loss has made you hard and handled you smooth like ocean handles sea glass, nickel or knife.”  Even better “… after your body poured through my fingers ash the exact texture of sand where I stood – our breath is only borrowed from the earth.”

Inbetweenland is about trauma and I know it.  I feel fire at a distance.  In the Spring and Summer in Central Texas the dryness is ripe with heat kindling.  Smoke would wake me and I’d stand watch paranoid in my knowing.  I feel heat with my hands and where energy is unkempt or burning in circles.  Jacks writes “…hands know things I can’t explain… asks where I am… In space.”  It is telling of unwelcome advances and I get that  “… the ground stops buckling despite aftershocks despite fire eventually…” and “… something in my dreams is burning… It is a fierce music.”

In Bruises, Jacks writes, “Sometimes when you are trying to forgive the world for its cruelty the only place you can find beauty is in the luminous red and green of stoplights…” sweet to the promise of the proprietary feel and soulful homelife of real hurt, of “… skin after blisters, scar tissue, slightly more beautiful than bare, breathing to the soundtrack of underwater music and a percussion like wooden stars?”

On Breaking up with My Girlfriend, My Job, and My Town is resplendent with “No”s not for the sake of “No”s but because it’s right “… for the sake of fisting and fighting and falling, no.”

Remyth:  Country means “… we’ll actually get to live, here, now…”  Jacks  promises, “… we won’t have to take drugs to turn off the radios in our heads, drink drugs to get out of bed. We will sleep, wake up, work create love fuck and raise fruit trees or children if we want to, even if we are three women and two men or one gender-variant unicorn five sharks and a star-bellied sneech.”

Yes, yes, yes… and for all that and more, “… we will get to love without terror.  Or we will love the terror as it leaves along with the morning light… the other side of a hard fight…”

Icarus Project Wings

Citations

Big Bend, Reflections on Disability, Dangerous Gifts, and Profound Transformation (McNamara, J.A., 2011); Retrieved 

Inbetweenland, (McNamara, J.A. 2013). Deviant Type Press, 2013. Oakland, CA.

Navigating the Space Between Brilliance and Madness: A Reader & Roadmap of Bipolar Worlds, (The Icarus Project, 2013, 10^th Ed.), 425 W. 47^th Street, NY, NY 10036.

www.theicarusproject.net (Vision, Mission, Work, Principles); Retrieved http://theicarusproject.net/about-us/icarus-project-mission-statement

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Does our culture allow for further exploration that reveals who these six million kids really are?  This exploration into my step-son would show a truly wonderful kid that could not possibly be more focused on the weekends when he dominates his soccer matches or when he takes scraps from our garage and turns them into works of art.

As I sat there I thought just how much people love their kids.  This may seem like a strange revelation at 41 years of age, but life has been anything but typical for me.  I watched parents move around with their video cameras.  I took part in standing ovations for music that reminded me a lot of the noise my cat makes when I am late feeding her.  Thanks to my wonderful step-children, I now have an understanding of parental love.  If someone were to ask me what I would do to help my kids have a happy life my answer would be – the same as the other parents in that room last night – anything.

This realization made me feel guilt about some strong feelings I have been having.  A few months ago Connecticut’s General Assembly had a hearing on mental health in response to the Sandy Hook tragedy.  The team at Advocacy Unlimited and many other activists and advocates spent roughly 13 hours at the hearing.  We testified and watched many others do the same in front of politicians and every major CT media outlet. I watched so many family members testify about how their loved ones were suffering and needed increased access to services – including forced treatment. They came from every walk of life to demand more services in the public and private mental health system.

I sat filled with anger for hours, listening to testimony that damaged our position.  The family members’ eyes filled with tears as they detailed the perceived troubles of their loved ones.  I realized last night that my anger was misplaced.  It should not have been directed at the parents.  The parents believed what they were told and what society believes – that certain emotional experiences can be signs of disease that needs to be treated like other medical illnesses.  The reality is that those parents I watched testify want exactly what I want – for our children to be happy.

I think there is little doubt that family members testifying and advocating for forced treatment and increased access to services has been effective (Intensive Outpatient Commitment – IOC – exists in 44 states and counting).  I now believe that in order to truly influence policy and spur significant change in the mental health system it is important that family members see that the problem is the services not access to them.  It was not long ago that I said in a meeting that I do not care what family members want.  I said that I advocate for changes in a system that “treats” adults.  Paul Acker, a fellow CT advocate, said to me that he disagreed with me and said the family members need to hear our voice.  He was right about hearing our voice and beyond that I forgot on a personal level how influential our families can be.  It was, after all, my mother that basically broke me out of a psychiatric hospital and got me in a place that saved my life.  It was my wife, at a time when all looked hopeless, that would not let me quit.  I was naïve to ignore the power of loved ones.  We can never accept the adoption of the “parental perspective” as the authority on our experiences.  That said, it behooves us to influence this voice that is so often powerful and sought out.

I think the way to shift the focus of loved ones is to show methods, outside of the medical model, that lead people from suffering towards a meaningful life of their choice.  I have made a conscious decision to always talk about techniques I believe work and not just criticize status quo “treatment methods.”  I got my first forum to test my new strategy when I was asked to speak in front of the Sandy Hook Commission last month.  I wanted to detail what it took for me to be able to reshape my life in hopes that they would recommend that services be improved and not just expanded.  I talked about my experience in a psychiatric hospital and years of just psych drugs and identifying as my diagnosis.  I told them that during my hospitalization I did nothing all day.  I was not talked to or given any ways to deal with my experience.  I presume that the days of nothingness were designed to allow time for drugs to “kick in.”  Once a day we lined up chairs to wait to see a psychiatrist.  In my first five minute meeting with the doctor, I was told I had a lot wrong with me and would need a drug cocktail for the rest of my life.

I told the Commission about the life disparity and the evils of the medical model in general.  But then, unlike previous speeches, I talked about what worked for me.  After my awful stay in the psych hospital I ended up in a rehab facility run by people who self-identify as “in recovery.”  I told the Commission that I was taught to be accountable for my actions and to take ownership of my life.  The counselors in the rehab told me that I was not broken and I could shape much of my time in this world.  For the first time in my life – I listened.  I listened because the people talking to me were living proof that a meaningful life beyond my current experience was possible.  In the years since rehab, I have listened to many people that have gone through experiences comparable to mine.  I have learned the impact nutrition has on my emotional wellbeing.  I have learned the value of being present; yoga and meditation have become staples in my life.  I have learned the value of facing my fears.  I also learned to sit with discomfort – as my friend Greg Benson has articulated on this site, I changed my relationship with suffering.  I have structured my life around deliberately incorporating these values and principles into my daily routine.

In the weeks since that testimony, I have been asked to speak in many venues.  People on the Commission asked to meet with me privately.  Opening up about what works for me has resulted in my being asked to speak in new circles.  I have been approached by many family members in these forums.  Some of them have said to me that what works for me would not work for their loved ones.  They say I was not “sick” like them.

I share with them the struggles I have had throughout my life, beginning in early childhood, with emotional distress.  I have been given three diagnoses and have been on countless psych drugs.  In my thirties, I became completely addicted to things that allowed me to escape myself.  I hurt people and publicly embarrassed my loved ones.  I suffered two strokes and have had open heart surgery.   I know suffering on so many levels.  At times in my life, suicidal thoughts were the only thing that gave me peace.  I speak honestly about my experiences with the hope that the family members I meet won’t so quickly distinguish my past experience as fundamentally different from their loved one’s current situation.

I will point out flaws in the system.  I will become emotional when I see the medical model rearing its ugly head.  I will also speak out on the mechanisms that humans have used to deal with troubling experiences for hundreds of years; things like yoga, meditation, community, spirituality and nutrition.  I was happy to see the blogs about nutrition.  I think it is really important to talk about how we can deal with distress in healthy and impactful ways.  I hope that in time the outspoken family members in Connecticut and beyond will see the value of holistic approaches and demand better from the system – not more of the same.

We can better encourage parents who are currently screaming for more access to the status quo – to be angry that the status quo is not good enough and needs to do better than just prescribing drugs.  We also owe it to our communities to channel the voices of parents who have minor children dealing with emotional distress, who feel that all the system offers children is diagnoses and drugs.

The post Family Members – Allies or Adversaries? appeared first on Mad In America.

Faced with questions about the $3 Billion fine imposed on GSK – Is it just the cost of doing business? Andrew Witty, GSK’s CEO, snapped back:

“Although corporate malfeasance cases end up looking very big, they often have their origin in just… one or two people who didn’t quite do the right thing. It’s not about the big piece. The 100,000 people who work for GSK are just like you, right? I’m sure everybody who reads the BMJ has friends who work for drug companies. They’re normal people… Many of them are doctors”.

This interview came about after a figurative earthquake. For 50 years since 1962, the tectonic plates of regulation and science had been grinding up against each other. This led to an eruption in 1987, a quarter of a century after 1962, when pressure to get drugs on the market for AIDS led to a regulatory crisis. Lou Lasagna was called in to chair a committee to find a way forward. This ultimately led to speedier drug approvals and the Prescription Drug User Fee Act (PDUFA), whereby to the dismay of many industry ended up paying the FDA piper. This crisis played a significant part in the development of GSK, whose rise to global dominance was linked to AIDS treatment.

A quarter of a century later again there was a further eruption. For years there had been evidence of growing pressure on the fault-line between regulation and science with a range of campaigners pressing for access to clinical trial data. Then Peter Goetsche from Copenhagen hit pay dirt when he secured a ruling from the European ombudsman that the European Medicines’ Agency had no option but to make trial data available to anyone who applied for it. For a brief period, researchers could access the data from any trials held by EMA. It was other companies who in fact applied most often for the data.

The BMJ launched a campaign to ensure that rights of access to trial data would be maintained. The centrepiece of their campaign was Peter Doshi and Tom Jefferson’s efforts to get access from Roche to the data on Tamiflu.

Witty appeared to give a boost to the campaign by promising access to GSK’s trial data. The BMJ featured him on their front cover in Barack-Obama-political-poster-mode with the word HOPE underneath and a strapline – ‘GSK’s Andrew Witty… The acceptable face of big pharma?’ They noted inside that, in response to his commitment to make data available:

[Witty] was singled out for praise by one of the industry’s harshest critics with Ben Goldacre calling it a “cartwheel moment”.

Many thought Pharma appeared split. Witty, the acceptable face of big pharma, appeared to be in favour of transparency but other companies filed an action against EMA in the European Court for infringing among other things their right to privacy, right to confidentiality, copyright and violation of legitimate expectations. The first time Pharma has taken the regulator to a Supreme Court since the Panalba case (see Tragedy and Witty A).

So if the problem is not bad people what is it that needs treating? Andrew made the point that there are few differences between him and us. But he wasn’t asked to take off a GSK hat, and answer as someone with a healthcare problem whether any of the points below that concern some of us would concern him. He wasn’t asked to distinguish between the efficacy of the current system in getting GSK’s drugs to market rather than its effectiveness in maintaining your and his health.

Neo Fascism

“This is your last chance. After this, there is no turning back. You take the blue pill – the story ends, you wake up in your bed and you believe whatever you want to believe.” (Morpheus to Neo in The Matrix)

Having taken the red pill, Neo wakes up to find the following:

1. A Gulag Archipelago

Trials in branded pharmaceuticals from 1960 to 2000 were done in Western clinical centers where the patients did not always exist. Publications based on these non-existent patients litter the academic literature without retraction or even a cautionary note in the case of trials where it is known the patients didn’t exist or the investigators have been jailed.

Since the mid-1990s trials have increasingly been done in South Africa, Russia, India and other countries where patients have little idea what is going on and where if the patients are injured they are routinely lost to follow-up.

2. The Disappeared

In this case the Disappeared are those suffering from treatment induced deaths and disabilities. The means of disappearance range from elaborate methods to avoid collecting the data, to concealment of evidence and of company determinations that “our drug caused that,” to statistical and controlled trial techniques to make deaths and injuries vanish.

Treatment induced death has become at least the 4^th leading cause of death, perhaps even the normative mode of death, but there are no concerted efforts to tackle this.

The lengths to which companies go to get an efficacy message out – ghostwriting trials, hiding data, and legal threats – pale in comparison to what they are prepared to do to hide or deny responsibility for the bodies of the Disappeared (See American Woman, American Woman 2).

This now extends to a growing number of children with birth defects miscarried or born to suffer and be stigmatized. We seem very unlikely to get a religious leader, Papal or other, willing to speak out about this.

3. Upper Volta with Biologicals

Effective treatments should lead to a reduction in healthcare costs and in levels of disability but healthcare costs and levels of disability are rising. We have some very sophisticated drugs but behind the high tech façade healthcare is crumbling with patients in some cases more scared to go into hospital or even see a doctor than they have been for close on a century, or they would even be in a developing country

(Helmut Schmidt in the 1980s described the Soviety Union as Upper Volta with Missiles).

4. TRIPs Pact Bloc

Most Western countries have signed up to TRIPs which maximises pharmaceutical company profits to an extraordinary extent. It also puts in place a range of punitive sanctions should a country deem the needs of their citizens outweigh the right to profit of a pharmaceutical company.

Aside from the punitive sanctions, if a country does not support their marketing, companies threaten to relocate their operations elsewhere. Countries (viz. the UK) will do almost anything to keep a company operating within their borders – even offering up their citizens as all but involuntary participants in company trials that are run by doctors whom the taxpayer has educated and salaried. And these clinicians  who used to be the critics and conscience of society have been told they must partner industry.

5. Tuskegee-es-kay

Consent forms were put in place in industry studies by Louis Lasagna in 1962 as a means of safeguarding patients. These have been transformed into an instrument of legal jeopardy, with patients unwittingly consenting that their data will be hidden from everyone for ever. This means that even when people have been injured in trials companies will say in public and in court “we have no evidence for any injury on our drug.”

Studies are undertaken on drugs that almost certainly have been undertaken in the knowledge that the drug causes death or injury and detailed knowledge of this hazard has been used to construct RCTs that will help hide the hazard. Neither the patients nor other doctors involved in such trials have any idea what is going on.

6.  Ministry of Truth

Close to all of the published literature about on-patent drugs is ghostwritten. Prestigious medical journals have encouraged this for the last 30 years. In terms of ensuring the integrity of the primary sources of a story and ensuring the authors are who they appear to be we would all be safer if clinical trials were published in the New York Times than in the New England Journal of Medicine.

7. Censorship

Even the most prestigious medical journals are scared to publish articles raising hazards about drugs, or even articles by anyone identified as someone who raises issues about treatment, for fear of legal action from companies. The situation is every bit as bad as the level of censorship in the former Soviet Union. Anyone who has tackled pharmaceutical companies on the one hand or Dan Brown’s Angel and Demon Vatican, knows that the Vatican is kids play compared to Eli Lilly or Pfizer.

Academic journals and societies show an auto-immune response to what should be the life-blood of therapeutics.

8. Propaganda 101

Not only has most of the academic literature become one big advert for branded pharmaceuticals but when hazards are raised, companies have learnt how to use any concerns about a drug as a means to increase sales of the drug, and as a means to bind even more doctors ever more closely to the company bosom.

After lecturing about the suicide risk on Prozac a decade ago, I was greeted warmly by a woman who said she was responsible for PR for Prozac in the UK and she was really pleased to meet me as I was doing more for the sales of Prozac than anyone else.

9. NewSpeak

Regulators never take it upon themselves to establish if a drug has a hazard. Their role is to manage risks. This does not mean that they warn about a hazard a drug might pose. It means they manage public perceptions or beliefs about a risk. Doubt is their product.

In the case of thalidomide the possibility that it caused birth defects met a regulatory response as to whether we have ruled out the possibility that it prevents the miscarriages of babies with birth defects. In the case of Matt Miller, a 13 year old boy who hung himself a week after going on Zoloft, it met a response that we cannot rule out that this was auto-erotic asphyxiation gone wrong and until we can it would be a mistake to blame the problem on Zoloft.

10. Una Duce, Una Voce

Guidelines depend completely on the published ghostwritten literature on which all data has been withheld. Once guideline makers treat company articles as though they are science they allow their guidelines to be captured by Pharma. By skilful publication strategies Pharma can always ensure that their latest on-patent drug features on top of the most independent guidelines. Economic pressures have forced a standardisation of healthcare in an effort to contain costs and this has transformed what was guidance into tramlines. These tramlines increasingly dictate what doctors have to prescribe.

11. Stasi-Style

Anyone raising the profile of a drug’s hazards is likely to get harassed, marginalized or terminated. The harassment will include having people in the audience to challenge everything said, reviewing everything written to see if it provides the basis of a legal suit, actively targeting and spreading malicious gossip and disinformation through PR networks, calling colleagues or friends to “get the dirt”, “reading everything you have ever written, Dr”, triggering tax inspections etc. We just need a viral video clip to compete, Gangnam-Style.

12. Medical McCarthyism

Anyone talking about the hazards of a treatment is marginalized by their clinical colleagues, and any group seeking a balanced approach to treatment is likely to be stigmatised as Scientologists or as ideological. This creates a ‘Spiral of Silence’ where others observing what happens learn to remain silent.

13. Scienceology

The norm in science is that there is free access to the data underpinning experiments. If free access is denied; it’s not science. In the case of branded pharmaceuticals, we do not even know what trials have been done. There is a denial of access to any raw data from any clinical trials. We have even less knowledge of what drug trials (healthy volunteer trials) are done and again no access to data even though there are no issues of clinical confidentiality. What is put in the public domain is not data. What will be put in the public domain under Andrew Witty’s proposal is managed access which is likely to be worse for everyone than no access.

The selected highlights of a football game and the comments of the pundits afterwards don’t change the score. The selected highlights of Pharma studies and the comments of pundits routinely change the score.

Any attempt to seek substance behind the rhetoric is likely to lead to vilification, intimidation and harassment.

14. Biobabble

Clinicians and the public are routinely sold a biobabble about drugs and diseases that is as ideological as anything found in Soviet Lysenkoism. The problem in this case doesn’t lie in the biological sciences it lies in the social sciences and anthropology as well as the humanities which have been used to produce an informational reductionism and standardization on the one side and to develop marketing on the other. (For a first use of Biobabble – see 1999).

15.   The Five-Year Plan

Instead of the old-Soviet style Five-Year plan we have the rolling marketing campaign linked to patent expiration. In sequence people have to be persuaded they are anxious, then converted to depression, and after that converted to bipolar disorder, or moved from pain, plain and simple, to fibromyalgia, or from ulcers to GERD.

Linked into the same processes, doctors are rewarded with financial incentives for adhering to guidelines for illness that may have only been invented a few yeas before – seen as The Method to good health by governments. Many of these incentives relate to targets like ‘the proportion of patients taking Brand X or Y.’ Doctors are coerced with targets to persuade patients into taking drugs, incentivized by payments with the quality care measured in volumes of pills or vaccines and adherence to policy.

16.   Homeland Security

Few are aware that almost all drugs are made available under police state provisions and supervision. The availability of medicines on a prescription-only basis was introduced as a means to control heroin and cocaine addicts in 1914. The War on Drugs initiated then has become a permanent War in which all citizens are treated as addicts and all doctors as police.

Extending prescription-only privileges to all drugs was sold to the wider population as a means through which medical scepticism would temper patient zeal for treatment. But doctors now funnel drugs to people in the Matrix in amounts that have many of pleading for respite or else surreptitiously dumping our medicines.

Rachel Liebert outlines how recent school shootings have led to the creation of a Homeland Security apparatus in our schools and colleges aimed at detecting any signs of abnormality in any students and getting them on medication.

17. Good Germans:

There are lots of Good Germans in the system. All tyrannies  have passed – up till this anyway. You have to survive till then, and life is more comfortable in the Matrix than outside. Unless they have come to take you or someone you know away, its better keep your head down and eyes averted. Keep taking the blue pills.

The Post-Fascist State

“The 100,000 people who work for GSK are just like you, right? I’m sure everybody who reads the BMJ has friends who work for drug companies. They’re normal people… Many of them are doctors.”

Any German in the 1930s or 40s could have said the same of his fellow-countrymen. And the subjects in the famous Milgram experiments were no doubt just like you and me also.

In the 1960s, there was great concern at the development of medical techniques that looked likely to lead to a control of behaviour. These concerns played a large part in the rise of post-modernism which was a protest before the event against the ideas that took shape in the 1990s that Prozac, Genetics and the New Biology would usher in a New Man.

Astonishingly, these concerns reached the level of a Congressional Hearing as far back as 1967. Seymour Kety, then the head of the NIH, attempted to put the developments in context for Congress:

“The manipulation of the brain by any of the biological techniques which can be developed in the foreseeable future would involve such drastic invasions of privacy, integrity and the unalienable rights of the individual that in their application behavioral control would already have been achieved even if the electrodes carried no current and the pill were placebo”.

Our pharmacological and biological techniques have not moved on much since then. The therapeutic armamentarium is in many respects weaker now rather than stronger but in its weakness it reveals that what has changed is that control has been achieved even when the electrodes carry no current and the pills are placebo or more harmful than placebo.

This was an outcome predicted by some in the 1960s, such as Jacques Ellul in The Technological Society, in which he argued that the techniques to really worry about were our public relations and marketing techniques rather than our engineering our biological techniques. The social scientists and students of rhetoric (media studies) of the 1960s, coached in post-modernism, migrated from universities to populate the marketing departments of pharmaceutical companies (see Factories of Post-modernism). They brought with them a means of control through a set of techniques first pioneered by Edward Bernays but greatly developed since then.

We operate now in a post-fascist state. Back in the 1960s the totalitarianism of the Soviet Union was a horror but Soviet citizens could very clearly see the enemy. The problem in the West now is that control can be far more complete because the mechanisms and levers are invisible. We volunteer into rather than are coerced into running the apparatus of repression. We live in a Benevolent Fascism.

From this point of view there are lots of reasons to think we might be better off if Pharma’s current legal action against EMA succeeds leaving us clearly able to see Bad Pharma withholding data than if data access is maintained but we get our access through a proposal put forward by ‘someone just like you or me.’

Illustration: HOPE: Pills You Can Believe In, 2013 created by Billiam James

The post Brand Fascism appeared first on Mad In America.

“Fear exceeds all other disorders in intensity.”
Michel de Montaigne, 16th C.

“It is a sad fact of life that power and fear
are the fountainheads of faith.”
Saul Alinsky, 1971

“We held no one accountable, gave Dick Cheney
a new heart and still got Boston.”
Jack Carney, 2013

“Don’t mourn, organize!”
Joe Hill, 1915, apochryphal

Fear. Omnipresent. Difficult to ward off or ignore. Just to advise readers, this long, somewhat involved article has been written for purely didactic purposes. Frankly, I’d like more folks to learn how to challenge their fears, how to organize and do systems change work. I trust readers will find it useful and that I managed to at least approximate what I intended.

About a month ago, in the aftermath of Newtown, a colleague posted a provocative article on the ISEPP list serve that had originally been published in The Washington Post, “White Men Have Much To Discuss About Mass Shootings”. The authors’ contention is that American white men have apparently overlooked the fact that most mass murders in the U.S. are carried out by other white men. Rather than searching for causes in the persons of crazy people or, after Boston, in immigrants and Muslims, white men need to examine their own culture, their own beliefs, and how these might be contributing to the mayhem.

I’ve written about this at some length in several articles I’ve posted on Mad In America since the Aurora massacre last August and I’ve identified what I consider two key phenomena – the politics of marginalization, i.e., scapegoating, and the culture of fear. The former has been standard operating procedure, largely on the part of white men, since the founding of the republic, when black men and women, native Americans, all women and all men who did not own property were excluded from recognition in the Constitution. No individual member of any of these groups could vote or hold political office and had no voice in the governance of the country. The history of the United States might best be understood as the struggle that has ensued between the political and social marginalization of the many versus the guarantee of political rights and personal liberty for all. That struggle appears integral to our national identity and can be expected to continue for years to come, since today’s scapegoats are tomorrow’s candidates for liberation.

In his newly published Fear Itself … (2013), Ira Katznelson, Columbia University historian, traces the origins of our modern culture of fear to the Great Depression of the 1930’s, when most Americans were gripped by doubt about their own survival and that of the American republic and liberal democracy. Many pundits of the day advocated the adoption in the U.S. of a model of government closer to that of the Fascist and Nazi dictatorships – strong executive; weak legislature and court system beholden to the executive. Single party; full rights of citizenship conveyed only to those persons found eligible to join that party. And while Roosevelt eschewed this as a viable political strategy and is credited with preserving democratic government and free market capitalism, he arrogated to himself and the office of the presidency and to the Federal Government the greatest concentration of power and authority since Lincoln and the Civil War. Gore Vidal, among others, credits Roosevelt with laying the foundations for today’s imperial presidency.

Unfortunately, the end of the Depression, usually understood to coincide with U.S. entry into World War II, did not end public concern with the country’s future. To quote Katznelson …

“… The scope of the era’s fearful concern for democracy soon widened. In 1941, the University of Chicago political scientist Harold Lasswell identified the “garrison state” as a new form of rule, presided over by specialists in violence, that cut across the distinction between democracies and dictatorships…”

Similarly, the end of the War did not bring with it significant change for the better. The peace dividend that had ordinarily accrued at the conclusion of all previous wars did not manifest itself and never has again. Just remember the fall of the Berlin Wall and the end of the Cold War – nada, by way of public funding to address domestic needs. Instead, the end of the war saw a flurry of activity designed to re-align U.S. foreign and domestic policy with post-war, Cold-war fears, i.e., in opposition to an apparently expansionist Soviet Union. Harry Truman, little more than a hack politician, fell under the influence of conservative yellow dog Democrats and speedily adopted an adversarial stance towards the Soviets. In 1947, the Congress passed the National Security Act, establishing the National Security Council and the CIA. Two years later, the Soviets had the bomb and China had been “lost” to the Communists, a refrain heard until Nixon visited China in 1972. We were left with what Gore Vidal termed the “National Security State,” the product of a National Security Council “blueprint for a new kind of country, unlike anything that the United States had known before … [and] the justification for all sorts of secret services that are in no way responsible to the Congress that funds them [or to] the old Constitution…” Vidal concludes;

“The climate of fear has been maintained… by Truman’s successors, with the brief exception of Dwight Eisenhower, who… warned us against the military industrial complex that had, by then, established permanent control over the state…”

By the time Vidal wrote that in 1988, fear – of the bomb; of war with the Soviet Union; of Fidel Castro and Cuba; of black men; of the “other” – had become part of Americans’ self-identity. If you’re my age or close to it, you can remember “Civil Defense” drills at school that required you to crawl under your desks for safety. One of the consequences of this early 1950’s campaign, popularized as “Duck and Cover” and aimed at children, was the development by adults as well as children of a presumed emotional disorder termed nucleomituphobia, or fear of nuclear weapons. It never made the DSM, whose first edition wasn’t published until 1952, but it did afflict a good number of persons, many of whom sought treatment with anti-bomb and anti-war therapists in the 1960’s and 70’s whom I happened to know. The aftermath of the 9/11 murders seemed like history re-cycling, although at a higher level of fear and paranoia. Terrorists were the new entity to be feared – the Cold War’s end and the Soviet Union’s demise had left too big a vacuum – particularly if they were Muslims.

This new fear was exploited by neo-Conservative ideologues eager to pursue an aggressive foreign policy rooted in and rationalized by American “exceptionalism.” This required another political hack in the White house to front the machinations, and the acquiescence of the Congress and the American public. In exchange for our safety and security, we accepted the “war on terror” – I turned to my wife when this new “war” was first announced and said to her, “We’re in for it now!” — wars in Iraq and Afghanistan; abduction and torture by C.I.A. and Defense Department operatives; the Patriot Act and daily and secret intrusions into our private lives. As I stated at the outset, we held no one accountable, gave Dick Cheney a new heart and still got Boston.

We should be fearful. If you watched the cable news shows, you saw the future — 9000 cops and FBI agents in armored vehicles in Watertown to apprehend one seriously wounded 19 year old. We live in a dangerous and deceitful world where danger is omnipresent; unpredictable; random. A matter of good and bad luck. Where the national government and a lame duck president are secretive and withhold information in the name of, what else?, national security. Which only serves to make us more fearful and which begs the question: how do we respond to our fear? More importantly, how do we prevent it from determining who we are? There are, of course, alternatives. We can continue scapegoating the politically marginalized – Muslims, immigrants, the presumed mentally ill, a grand old American tradition; or we can organize for change and social justice, another grand old American tradition that’s easier to romanticize than it is to put into practice.

I learned about organizing in the Peace Corps (1964-7); as a social work grad student at U.C.L.A. under the tutelage of Warren Haggstrom, Alinsky’s lead organizer in the fight against Kodak in Rochester (1967-9); working with a bunch of like-minded radicals in the L.A. County Department of Public Social Services (1969-1971); and as a “grass roots” organizer working in Sunset Park, Brooklyn, out of an outreach storefront attached to Maimonides Community Mental Heath Center (1971-1976). It was there that I embraced and attempted to operationalize the ideology of the community mental health movement – an organized and empowered community is a healthy community. Just to give you some historical benchmarks, this was the time when the National Security State (NSS) came under fierce attack for overreaching in Vietnam and bombing Cambodia; when Nixon ended the War on Poverty and proclaimed the “War on Drugs”, offering Black men as the new scapegoats to the frightened “silent [and largely white] majority” and locking them up in prisons and mental hospitals in record numbers. (Michelle Alexander (2010) and Jonathan Metzl (2010) provide excellent accounts of that era and its present day aftermath.)

As a direct consequence of Nixon’s and his successors’ actions to safeguard the NSS, all the government-supplied organizing money dried up. To paraphrase Pogo, we have seen the enemy and it’s those damn’ lefty organizers. The right wing had simply trumped the remnants of the New Deal and Kennedy progressives. One telling illustration: when Nixon dismantled the Office of Economic Opportunity (OEO) in 1973, his special advisor, Pat Moynihan, who had written The Negro Family: The Case For National Action (The Moynihan Report), in 1965, and set up the OEO for LBJ, followed the money, left the White House and won Jim Buckley’s (William F.’s brother) N.Y. Senate seat in 1976. That same year, Maimonides’ Federal funding ran out and all its outreach storefronts, where all the organizers worked, were shut down. I went to work in Maimonides’ in-patient psychiatric unit and began my long and involved training as a psychotherapist. But that’s yet another story.

What remains to be told in this narrative is that the mid-1970’s didn’t mark the end of organizing. There’s some organizing going on right now – our Boycott DSM-5 effort and the work being done by Tina Minkowitz and the Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP) – that I’ll discuss below. It just means that you have to do it on a shoestring, particularly if you’re part of a politically marginalized group and have very few resources. Which predicament has never seemed to stop anyone determined to get things done.

Let me begin that discussion by outlining a template for organizing, derived from Alinsky’s Rules for Radicals(1971) and my firsthand experience, that might prove useful for aspiring organizers.

1. Have a plan. As my old organizing buddy, Mickey Weinberg, would say, you have to have a plan. In other words… what are you trying to achieve and how do you intend to achieve it?
2. Provoke conflict with the entity or organization most likely to oppose what you’re attempting. The issues at the root of the conflict have to be made clear.
3. Seize the moral highground. There are the good guys and the bad in any conflict. Make sure it’s you that’s seen as the good guy, the one with right and justice on your side.
4. Know the environment or system(s) you’ll be operating in. Who are the key stakeholders in the system? Who has the power or leverage to make changes in the system? Make them your ally or, at least, sympathetic to your cause.
5. Build your organization as a transparent, inclusive and democratic entity, with all key decisions made by the organization’s elected leaders and by its membership. Identify and bring to the fore individuals who can provide leadership.
6. Review regularly the progress made by the organization in pursuit of its objective. Modify its objectives and organizational strategy in accordance with the results it’s achieving and specific conditions/variables in the organizational environment. Learn from your mistakes!
7. Keep your eye on the prize, but be flexible and prepared to improvise on the fly.

I’ll add one more proviso — study the past and learn from it. At the top of my list are two iconic organizing campaigns: the Great Flint Sitdown Strike of 1936-7, and the Birmingham Children’s Crusade, May 2-8, 1963, the culmination of a year-long battle to integrate the City of Birmingham. Full accounts can be found in the late Sidney Fine’s Sit-down: The General Motors Strike of 1936-1937 (1969), and in Taylor Branch’s two-volume masterwork, Parting the Waters : America in the King Years 1954-63 (1988) , and Pillar of Fire : America in the King Years 1963-65 (1998).

In the here and now, I’d like to think that our Boycott DSM-5 campaign conforms to my organizing template. Readers can judge for yourselves when I post “Next Steps: More Lessons Learned from the DSM-5 Boycott,” on or about May 20, the date of the new DSM’s scheduled publication. Right now I’d like to focus on the work being done by Tina Minkowitz and her group, which appears to have taken on greater urgency subsequent to the psychiatric profiling that followed on the aftermath of Newtown. They’ve taken on the daunting task of bringing to public attention the political and social consequences of the country’s forced treatment policies for persons caught up in the public mental health system and changing the laws governing them. Her Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP) launched a campaign almost two years ago, the Campaign to Repeal Mental Health Laws (CRMHL), whose objective, to quote from their position paper, is the “repeal of [all] mental health laws, guardianship, the insanity defense and all other laws that discriminate based on madness and mental health labels/struggles with difficult experiences.” And they have a plan.

First, they made two key strategic decisions:

• To align themselves with the U.S. and international disability community, which is quite extensive and does have some leverage within the U.S.;
• To equate their struggle to overturn psychiatric profiling and all forced psychiatric treatment in this country with the pursuit of universal human rights as embodied in the U.N. Convention on the Rights of Persons with Disabilities (CRPD).

The former was somewhat controversial, since not all psychiatric service users and survivors agree with being characterized as disabled. But, to borrow a page from the Gay Rights struggle, what difference does it make to you as a person how you might be labeled if your human rights are guaranteed. The label will soon have little meaning for most Americans and might even be your badge of pride. Article 12 of the CRPD calls for “states parties”, i.e., countries that have ratified the Convention, to “recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” Further, it obliges “states parties [to] take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity…” Accordingly, if you have “equal status under the law”, your legal equality cannot be “derrogated” or diminished by a presumed “diminished capacity” due to an hypothesized mental illness. Consequently, you can only receive treatment of any kind if you consent to it; to receive treatment without your consent is to receive “forced’ treatment.

Second, they have established themselves as the “good guys” and currently occupy the moral high ground. The U.S. Senate, it should be remembered, failed to ratify the CRPD back in September. (It should be noted that the U.S. became a signatory to the Convention back in July, 2009, little more than two years after it was enacted by the U.N.) Right wing lobbyists, led by Rick Santorum, made the usual appeal to U.S. exceptionalism, advancing the spurious claim that CRPD ratification would open the door to international meddling in U.S. family life. The Tea Party wing in the Senate embraced that argument; and the Democrats, led by then Senator now Secretary of State Kerry, failed to muster the two-thirds majority needed to ratify the Convention. Even if the Convention had been passed, it had been amended with so many R.U.D.’s – Reservations, Understandings, Declarations – or amendments as to render the CRPD meaningless.

R.U.D.’s are invariably attached to U.S. ratification of many of its international treaties, particularly those emanating from the U.N. and dedicated to promoting human rights. They are usually rooted in two constitutional and legal notions: “federalism,” interpreted to mean that the individual states are each sovereign entities and can’t be obliged to change their existing laws unless they contradict Federal laws; and that Federal law already “fulfills or exceeds its obligations” under the treaty being considered. The CHRUSP and its allies, in a recent letter to the National Committee on Disability, asked the NCD, whose members are appointed by the President and confirmed by the Senate, to push for re-consideration of the CRPD without the invalidating RUD’s. The letter pointedly reminds the NCD “…that human rights are universal, and that no state can declare its own law to be the measure of compliance with the treaty.” This was a reference to Kerry’s statement after the CRPD’s defeat in the Senate “…that ratifying the treaty would not require any change to U.S. law, but would afford the nation a leadership role in the international community on disability rights issues…”

(It should be noted that, to date, seventy-six of the U.N.’s 168 member nations have ratified the Convention.)

Third, CHRUSP has found a powerful ally in the U.N. Human Rights Committee. In late March, Tina Minkowitz and Maxima Kalitventsev took their convictions and commitment to Geneva and met with the UN Committee to present CHRUSP’s case. The U.N.’s Special Rapporteur on Torture, Juan Mendez, had just issued one of his periodic reports (March 4, 2013) focusing “on certain forms of abuse in health care settings that may cross a threshold of mistreatment that is tantamount to torture or cruel, inhuman or degrading treatment or punishment…” He concludes in his report that “…medical treatments of an intrusive and irreversible nature, when lacking a therapeutic purpose or when aimed at correcting or alleviating a disability, may constitute torture (italics mine) …when administered without the free and informed consent (ditto) of the person concerned…”

Mendez’s report served as the backdrop to what Tina and Maxima told the Committee. Informative accounts of what took place can be found in the blogs that Tina and Maxima posted on MIA on April 4. Maxima provided the Committee with the personal anecdotes needed to bring the issue at hand – forced treatment without informed consent – to life, to make it real. Tina detailed the chief outcome: specifically, that hers and Maxima’s testimony appeared to lead the Committee to conclude that the United States government, a signatory of the International Covenant on Civil and Political Rights, albeit with the usual RUD’s, might be in violation of Article 7 of that Covenant, which “prohibits torture and cruel, inhuman or degrading punishment.” As a consequence, the Committee has asked the U.S. to respond to the following question by October: “Please clarify how, in the State party’s [the U.S. government’s] view, the possibilities for non-consensual use of medication in psychiatric institutions and for research and experimentation… are in conformity with the obligations upon a State party under 7 of the Covenant.”

CHRUSP anticipates that the U.S. will argue as it customarily does that its current laws and public policies allow it to carry out its obligations under the Covenant. It also expects to have the opportunity to challenge the U.S. reply, and will send a delegation to Geneva in October to meet again with the Human Rights Committee.

Fourth, CHRUSP has succeeded in framing the issues and determining who supports their solution to forced treatment and who opposes it. Nonetheless, formidable obstacles remain to be surmounted, principle among which is the U.S. Government itself. The CHRUSP’s task is to get the Federal Government to do an about-face… to approve the Convention on the Rights of Persons with Disabilities without the disqualifying RUD’s; to take the lead in abolishing all laws, Federal and State, that allow for forced, non-consensual treatment of persons presumed to have mental illnesses and so bring the U.S. into compliance with the Convention. In short, lasting change will depend on the cooperation and agreement of the Federal government.

It is, of course, not likely, that either of the foregoing will be achieved anytime soon. These are endeavors that will take years to accomplish, no matter how much international support, principally that of the U.N., that CHRUSP and its allies can muster. Citing its exceptionalism prerogative , the U.S. will resist what it can be expected to characterize as foreign intrusions into its national sovereignty. This is not to say that CHRUSP is not on the right track – it is, but it is a long and hard one, something which I assume CHRUSP fully understands. Accordingly, it appears to be honing in on the most vulnerable stakeholder in the U.S.’s disability system, the National Council on Disability (NCD), pressing the NCD to enlist the White House and the Senate to re-consider ratifying the CRPD, without RUD’s, if possible. In addition, and perhaps crucially, CHRUSP plans to convince the NCD to recognize persons with psychiatric disabilities as a unique entity within the constellation of disability groups whose interests it presumes to represent to the President and the Congress. Again, it’s not likely that the RUD’s will be dropped, but it’s worthwhile to make an issue of them. More achievable is the demand that the NCD accord “users and survivors of psychiatry” a formal recognition at the national governmental level they currently do not have.

It can be anticipated that CHRUSP will expend a lot of energy and resources to send a solid delegation to Geneva in October. It will need money to get them there and I will make a fund-raising pitch on their behalf at the article’s conclusion.

Fifth, boots on the ground and in the blogosphere. CHRUSP has begun planning a letter-writing/ lobbying campaign aimed at the Congress and State legislators to ratify/support the provisions of the CRPD and to repeal all State laws authorizing non-consensual psychiatric treatment. Its several allies in the U.S. – Voices of the Heart; Mind Freedom International; Law Project for Psychiatric Rights; World Network of Users and Survivors of Psychiatry; and the International Disability Alliance – can be expected to participate in this initiative. Politicians love getting letters. They also respond to Facebook posts and Tweets.

Our Boycott DSM-5 campaign has relied almost exclusively on social media, with some success. The Boycott statement we have posted on ipetitions.com has also attracted a fair amount of attention – almost 1800 signatures to date. One of the advantages of a social media campaign is that the petition website, FB accounts and attached Cause Pages, and Twitter accounts are cost-free. They do require someone who knows how to set up and manage a website, but there is usually someone among campaign supporters who’s sufficiently knowledgeable and who will do the necessary work. (I volunteered my niece, who earns her living as a computer consultant.) Another plus is that the demands placed on supporters to conduct a social media campaign, while not negligible, are certainly manageable. If CHRUSP has not yet considered launching a social media campaign, I suggest that they do. Letters, to remind CHRUSP, can be sent/scanned via computer.

The trick, as always, is to appear to have a larger presence than you might actually have. Numbers and volume are crucial to draw attention to what you’re doing, particularly when you are few in number, relatively powerless and poor.

Finally, money. If you prefer to send a check to the Center for the Rights of Users and Survivors of Psychiatry (CHRUSP), simply put “UN” in the memo section of the check to indicate that your donation is to be used for CHRUSP’s delegation’s travel to Geneva next October. Mail it to

CHRUSP
44 Palmer Pond Road
Chestertown, New York 12817

You can also make an online donation via CHRUSP’s website.  At the bottom of the left hand column of the website’s Home page, there’s a “Donate” button which links to “Network for Good”, where credit card donations can be made.

Frankly, CHRUSP’s campaign is one of the few I’m aware of aimed at fundamental systems change. I devoted several pages to its efforts to both highlight what it’s doing and detail how, for purely didactic purposes. As I stated at the outset, I’d like more folks to learn how to do this work and organize. I trust readers found it helpful and informative.

Remember, don’t mourn (or just bitch and moan); organize!

References:

Alexander, M., The New Jim Crow: Mass Incarceration in the Age of Colorblindness, The New Press, New York & London, 2010

Alinsky, S., Rules for Radicals, Vintage Booke, New York, 1971

Branch, T., Parting the Waters : America in the King Years 1954-63,
Simon & Schuster, NY, 1988

Branch, T., Pillar of Fire : America in the King Years 1963-65, Simon & Schuster, NY, 1998

Carney, J., Scapegoating Persons Labelled Mentally Ill: The Politics of Marginalization January 25, 2013

Carney, J., Mass Murder in Newtown: Why and Where Next? December 20, 2012

Carney, J., Remembering the 2003 Fast For Freedom: Time for Another? September 20, 2012

Carney, J., “Aurora: Shrouded in Myths” August 1, 2012

June 23, 2012

Committee for the Human Rights of Users & Survivors of Psychiatry (CHRUSP), http://www.chrusp.org — resource documents to be found on this website:

• Campaign to Repeal Mental Health Laws
• Forced Psychiatry as Torture: A Reflection on the Ongoing Development of Human Rights Norms and Related Conversations
• Principles for Implementation of CRPD Article 12
• Public Comment on NCD’s Engagement with the UN Convention on the Rights of Persons with Disabilities
• Why Mental Health Laws Contravene the CRPD – An Application of Article 14 with Implications for the Obligations of State Parties

Childress, C., Childress, H., “White Men Have Much To Discuss About Mass Shootings,” March 29, 2013,

Diamant, M., “Senate Rejects UN Disability Treatment” Disability Scoop, December 4, 2012,

Fine, S., Sit-down: The General Motors Strike of 1936-1937, (Ann Arbor: University of Michigan Press, 1969).

Katznelson, I., Fear Itself: The New Deal and the Origins of Our Time, Liveright Publishing, New York & London, 2013

Kalitventsev, M., “More Than Surviving: Speaking Up About ‘Life’ in the American ‘Mental Health’ Gulags” April 4, 2013,

Metzl, J., The Protest Psychosis: How Schizophrenia Became a Black Disease, Beacon Press, New York, 2010,

Minkowitz, T., “The U.N. Asks the U.S. to Defend Its Use of Forced Psychiatric Drugging” April 4, 2013,

– resource documents to be found on this website:

• Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment
• Convention on the Rights of Persons with Disabilities
• International Covenant on Civil and Political Rights
• Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Mendez, March 4, 2103

U.N. Disability Newsletter, Enable, “Convention on the Rights of Persons with Disabilities”

U.S. Senate, Report from the Committee on Foreign Relations, “Convention of the Rights of Persons With Disabilities (Treaty Doc. 112-7)”, submitted by Senator John Kerry, July 31, 2012

Vidal, G., “The National Security State,” (1988), Selected Essays of Gore Vidal, Jay Parini, ed., Vintage Books, New York, 200

The post The Culture of Fear and the Lost Art of Organizing for Social Change appeared first on Mad In America.

Gosh, well, where do I start counting?

How about after my first psychiatric diagnosis? (age 16)

Directly following release from my first hospitalization? (age 21)

After my first dose of psychotropic drugs… or my last?  (age 16 and 26, respectively)

Perhaps it was the last time I saw a therapist? (age 29)

(In fairness, these ages are estimates.  It’s all a bit of a blur.)

I could go on.  But I’ll spare you.

For those who consider themselves to be ‘in recovery’ from substance abuse or addiction and who follow an abstinence model, the answer is clear.  They have a whole system – replete with souvenirs of remembrance – to document their recovery down to the day.

I, on the other hand, have many ups and downs.  There is no specific beginning to them (unless you count birth) and there will be no end (unless you count death).

Yet, one of the statements that most drives me up the proverbial wall is that ‘recovery is a lifelong process.’

At this point, all I can think to say in response is, “Just when was it decided (and by whom) that what you get to call ‘life,’ I have to call ‘recovery’?”

We really need to amp up our examination of who coined this ‘lifelong recovery’ idea.  For one, I don’t believe I was ever ‘sick,’ and so from what precisely would I be recovering?  And just who exactly developed this weird, black-and-white binary of ‘sick’ and ‘well’ to begin with? (Surely, one is never completely one or the other in their entirety.)  What of the complicity with assumed chronicity that being forever ‘in recovery’ implies?  I could also offer the same argument we’ve already heard of co-optation – of the painfully quick shift from meaningful to buzzword.  I could speak to the offensiveness of medical facilities and even hospitals dressing themselves up in pricey, painted bricks and ‘recovery’-oriented names.  (And, even though I’m ready to release the word itself to the wild, this phenomenon IS offensive.)  I could wonder – as so many have – about what it is exactly that I’d be ‘recovering’?   But I want to go deeper because the reality is there simply is no humanity to be found in the broad brushstrokes of these simplistic concepts as they are laid down over the complexity of our lives and minds.

I don’t have a lot of fond memories from when I worked in a more traditional provider setting, but one particular analogy a former colleague offered   has stuck with me over the years.  In the language of cigarette smoking: there are those who smoke, those who have stopped smoking and consider themselves ex-smokers, and then there are those who have been stopped for so long that they simply consider themselves non-smokers again.  The comparison is imperfect, but I appreciate it for the basic fact that it supports the idea that some people have a particularly difficult time in life and then just… move on.

I heard Daniel Mackler talk once about how difficult it was to find people (who had received a particular type of support) to talk to during the making of one of his films because so many of them had simply moved on with their lives.  They were doctors and lawyers and teachers and parents.  They didn’t see themselves as ‘in recovery.’   They hadn’t necessarily left a forwarding address.

How have we allowed ourselves to be sold this idea that ‘recovery’ is where it’s at?  In whose best interest is it to keep us believing that?  We spend an awful lot of time supporting one another to get in and stay in ‘recovery.’  But what if ‘recovery ‘is just another prison and we’re wasting our time keeping each other there, rather than focusing all the energy we can muster to build an escape hatch?  And, no, ‘escaping’ doesn’t mean living a life free of pain or that all old wounds have healed perfectly.  It doesn’t mean that I believe we’ll all be living life as if we’re ‘skipping through a field of daisies,’ as I was once accused of believing.  (Who on earth walks through this world so perfectly untouched and unaffected?)  It simply means that we have moved from a place where our hurts consume and define us to one where we recognize that they are but a part of what make us human.

I don’t mean to take a word away from those who find it meaningful.  However, much like I find ‘stigma’ (see my blog post, ‘Anti-Anti-Stigma’) to be a word of the system that demonstrates tacit acceptance of the existences of all its parts, so do I find ‘recovery.’  These unnecessary delineations between those who are living ‘in recovery’ and those who are simply living continue to foster an ‘us’ and ‘them’ that inherently negates the truth that ‘us’ IS ‘them.’  I realize it also creates a sense of camaraderie in some realms, but is it worth it in the long run?

Once again, we find ourselves on a merry-go-round and here’s where I get off.

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